Jars of Clay
By Barbara Mulvey
Copyright January 1999
“Not to us, O Lord, not to us,
but to your name be the glory,
because of your love and faithfulness.”
He gave me:
“beauty for ashes
the oil of joy for mourning
the garment of praise
for the spirit of heaviness.
That I might be a tree
a planting of the Lord
that He might be glorified.”
“For you created my inmost being. I praise you because I am fearfully and wonderfully made.” Psalm 139:13,14
Our Sarah was born late in the afternoon of October 14, 1975. She was beautifully pink and perfect in every way. As Allen and I took turns holding her gently in our arms, we couldn’t believe that we had created her. The Lord had given us this precious little life to nourish and we rejoiced.
I had wanted to do everything right for our new baby, so I had been preparing for months for this moment. But, when I put her to my breast for the first time, things did not go well. She got very excited and couldn’t seem to find my nipple with her anxious little mouth. I decided that we both had a little bit of “stage fright” and that with time we’d adjust to each other.
Neither of us liked the hospital routine. It seemed whenever the babies were brought out onto the floor, Sarah was asleep. In those days, in this particular hospital, nursing on demand was not a popular way of doing things. The breast-fed babies were brought out during the same feeding times as the bottle-fed babies. The nurses were complaining that Sarah cried in the nursery and asked that they be allowed to give her some water from a bottle to quiet her down. I wasn’t very thrilled, but decided not to make waves. We’d find our own schedule once we were home.
My mom and dad came up to pick me up from the hospital and take us home. Allen is a campus police officer. The students had threatened the college administration with a demonstration of some kind that day, and Allen was not allowed even a few hours off to take us home. Later, in the afternoon, Allen was allowed to come home.
At home at last, Sarah cried and cried. She’d sip for a minute, then fall asleep. She was wetting diapers, seven or eight a day. The LaLeche League literature I had read suggested that if you have a good output of liquid, a lot of liquid must be going in. I forced worry from my mind. We’d adjust - some babies just cry a lot.
The following Wednesday, the night my mom was leaving, Sarah developed trouble with her breathing. Her temperature was only 96. Her ribs curled in at the bottom as she huffed in short quick breaths. I called our pediatrician, who was out of town. I called the pediatrician who was “on call”. He was at the hospital. I called the hospital. They connected me with the maternity floor. The nurse who answered the phone told me that the doctor was too busy to come to the phone, but assured me that “the baby probably just has a cold.” I reassured myself that my feelings of uncertainty were just “new parent jitters”. Allen went downtown, bought a nasal syringe and we did extract some mucus from her nose. Mom and I cried as she headed for home.
Sarah still wasn’t catching on to breast feeding. I told myself that she didn’t feel well because of her cold. I tried to slide drops of breast milk into her mouth with a spoon. She would lick her lips and fall asleep. She was still wetting diapers. I thought that was a good sign. Thursday passed. Things didn’t feel right. I prayed that Friday would go better.
Friday didn’t go better. When I bathed her, she looked thin to me. I weighed myself, then myself with her in my arms. If our bathroom scale was right, she may have lost two pounds. We called our pediatrician, who was still out of town. We called the pediatrician who was “on call” but still “unavailable”. We called a pediatrician we didn’t know. He said he’d see us at about 4 p.m.
“Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me;” Psalm 23:4
The pediatrician looked at Sarah, then at us. His eyes were full of sorrow.
“This baby is critically ill,” he paused as if he were wondering if he dared say the rest, “The unfortunate thing is that nobody around here can do anything to help her....You see, she is severely dehydrated and needs an iv immediately. In order to insert an iv, someone would have to do a surgical cut down of her leg (take it all apart until he finds the vein) then put the iv into her. No one around here is qualified to do that.”
Allen and I, stunned, looked at our crying 10 day old Sarah on the examining table, then at each other. How could this be? Our first born, lost so soon? Tears welled up in our eyes.
Allen was not content to just accept the news that his daughter was dying. (I was numb.) He asked, “Where do we go?” He was not going to stand idly by and watch his daughter die.
The doctor replied that we might have a chance if we could get her to Upstate Medical Center in Syracuse, about 40 miles away. “Do you know where that is?” he asked. We shook our heads. “Just go down Route 481 to Route 81, get off at Adams Street and it’s right there.”
As I got Sarah dressed, I heard Allen mention something about calling an ambulance. The doctor assured him that there was no time to wait for an ambulance to get here and drive there. Her best chances were with us, leaving immediately. As we raced out of his office, he handed me a bottle of sugar water and said, “Here, if she’ll take some of this, give it to her. I’ll call ahead so that they’ll be ready for you.” Outside, as we dashed to the car, I asked Allen how to baptize her. Once in the car, I took some sugar water and baptized her in the name of the Father, Son, and Holy Spirit. Then, I gave her some sugar water. She took a few gulps and fell asleep.
As we approached the first traffic light, it was red. The seconds pounded away like hours. The light changed, Allen turned the corner and put his foot to the floor. Several months earlier he had modified the car so that it would get better gas mileage. He had tuned it in such a way, that it also had more power. As he forced the pedal down, the second barrel on our carburetor opened and we began to race down the road.
Allen had, on several occasions, been involved in high speed chases at work. (Most people don’t realize that Campus Police officers encounter the same kinds of criminal activities on campus as any police agency of a small city. It makes sense when you think of the size of the populations involved.) Anyway, I was becoming aware of the fact that I had never gone so fast before. I looked at him, tears streaming down his face, lips tightly pressed together over clenched teeth. I wondered if any of us would survive the ride.
I remembered the day I came home with the news that I was pregnant with Sarah. Allen had been upstairs working on one of his many hobbies. His only comment had been, “Well, that’s what you thought when you left.”
It had been at my insistence that he’d gone to Lamaze classes with me. He was sure that he’d be of no use to me while I was in labor. At our first Lamaze class, our instructor told us to lie down and relax. Then she went around the room, offering encouragement to each couple. When she got to us, she said, “Allen you are gritting your teeth. You cannot relax if you are gritting your teeth.” Even so, he was wonderful during my labor and delivery. I was in labor for 18 hours and he kept encouraging me and keeping me on track. When he first held Sarah, he had the biggest smile on his face and tears glistening on his cheeks. It was the first time I had ever seen him cry.
That joyful face was nothing like the set-jawed, determined looking face of the man who was now racing to save his daughter. What I did not know was that the car was running very roughly and he was afraid that we wouldn’t make it.
We raced down Route 481 and passed a car on the merge ramp to Route 81. We raced down Route 81 until we reached the Adams Street Exit. When we got off on Adams Street, we found ourselves on a one-way street with four lanes of traffic. There were no signs for the hospital. We were underneath the elevated section of Route 81 and couldn’t see to look for the hospital. We prayed for the Lord to help us. A taxicab pulled up next to us as we waited for a traffic light. I rolled down my window and asked the driver where the hospital was. He told us to go ahead two more lights and turn left, that the hospital would be on the right about a half block ahead.
At the hospital, the doctors couldn’t believe their eyes. This baby had been born 10 days earlier, weighing 7 pounds and 3 ounces. Now she weighed 4 pounds and 14 ounces. The salt levels in her blood were so outrageously high that her brain should have been killed already. Instead she was screaming and wiggling and fighting as much as her tiny body could as they inserted an iv into her head and got her ready to be admitted. As they moved her up to the Neonatal Intensive Care Unit, the doctor warned us not to let her activity fool us. She was gravely ill. I called our minister, who came and waited with us.
As we waited, we prayed, sometimes together out loud; but mostly quietly to ourselves. I was afraid. I believe in a strong God, one who has His own plans for things. It was possible that this was one of those times when my will might not match up with His plan. I prayed, “Lord, I know that it’s up to You. You can either take her or return her to us. But Lord, I’m so scared. If I lose her, I think I’ll blame You - probably hate You.” I was afraid I would lose my baby and my faith at the same time. I didn’t tell anyone of my fear. I kept it between Him and me. I asked Him to heal my heart if He decided to take her. After I prayed, I felt a strange feeling of peace. I felt assured that she would be all right. It was as if admitting my fear made it disappear. I stopped trying to figure out what I would do if....
Finally, at about 9 p.m. the doctor said, “Go in and see her, touch her, talk to her.” We went in and looked at our beautiful Sarah. She was connected, with wires and tubes to all sorts of emergency life support machinery, in a special temperature controlled crib. She was greyish in color. It really hurt us just to look at her. The doctors suggested that we go home, they’d call us if there was any change. We should call them around 11:30 p.m. to see how things were going.
Once we got outside and walked over to our car, we couldn’t believe our eyes. There was oil everywhere - all over the hood, the fenders, even the windshield and there was a huge puddle of oil underneath the car. Allen lifted the hood in the dark parking lot. The pollution control valve had blown completely off the engine. The guard at the emergency room door asked us if we needed a cab. Our minister assured him that we had a ride. The guard said that we could leave the car there until morning.
On the way home we began to tally up the miracles that had happened already: (1) That Sarah had lived to be treated (her salt levels were so high she should have been dead before we got to the hospital), (2) that we hadn’t waited longer to get her “cold” checked by a doctor, (3) that the taxicab had been next to us at the light to give us directions, (4) that the car drove 40 miles pumping oil out the whole way. We told ourselves that the Lord wasn’t going to waste those miracles and we prayed we’d tell Sarah about them someday.
The next day we came back and put five quarts of oil in the car. When we arrived at the hospital we had had less than one half quart of oil left. To our amazement, the car started right up and appeared to be unharmed. (In fact, we would drive that car for about 5 more years.)
“O give thanks unto the Lord; for His mercy endureth forever...” I Chronicles 16:34
The evening of October 24, 1975 a medical miracle had happened. In a big baby, an iv is pumped at a rate of 6 cc’s per hour. Sarah was a tiny baby (4 pounds, 14 ounces) and probably could have only tolerated an iv at a rate of 3 cc’s per hour. She was also in dire need of having the salt in her blood diluted before it destroyed her brain cells. Since they figured that the salt would soon kill her, they attached two iv’s at a rate of 60 cc’s per hour (nearly 20 times what a four pound baby could take safely). That night she gained two pounds, in just water.
When we went in the next morning, she looked like a little sausage. Her skin was filled up again. Her doctors were still baffled. She had gained two pounds in water, but the salt levels had not dropped. They couldn’t figure out why it hadn’t diluted. We began to wait to see what would happen.
During these days, Allen and I seemed to find ourselves crying in shifts. I’d cry and he’d hold me, then I’d find him weeping and we’d be in each others’ arms again. Sarah began to have some seizures. Brain damage was becoming a real possibility, but how much? Time would tell. At this point we didn’t even know if she’d live.
I remember one afternoon, as we drove home, saying to Allen, “I feel like she’s caught in a battle between Satan and God. She makes a small gain, followed by a big scare.”
His reply was softly spoken, “Well, then, we don’t have to worry, because that battle was decided centuries ago. And we already know Who won.”
Sunday morning, October 26, we met with the chief pediatrician who had been called in on Sarah’s case. He asked us all the questions we’d answered ninety times before. Had she been ill? No. Vomiting? No. Diarrhea? No. So on and so on. Finally he said, “Her kidneys and liver aren’t working properly. There’s blood in her stool. She’s having seizures. But the biggest problem is still the salt. We’ve added all that water and the levels haven’t dropped.” He shrugged and said that about all we could do is wait.
About this time, our congregation at home was gathering for church. A lab technician came in with the latest blood test results. The pediatrician began to smile, “She’s rapidly approaching normalcy.” We began to cry again. I ran to the phone to call the church to have our friends told. Pastor’s wife answered. When she heard the news she said, “We just finished a nice prayer for Sarah.” Thank you Jesus!
That afternoon we finally felt confident enough to hold her again. My spirit soared as I held her tiny frame against me. The tubes and the alarms were invisible to me. All I saw was my beautiful pink baby girl. I could tell by the ear to ear grin on Allen that he felt the same way.
The next 11 days were almost comical as we rejoiced in the assignment of getting to know our baby again. Allen took time off from work and we spent day and night with her. In fact, we spent so much time there that people thought we were doctors. We’d walk onto the floor, scrub, put on our gowns, walk into the wards, and pick up Sarah’s chart (which we were encouraged to read.) We had even made “friends” with some of the other babies. One afternoon, another set of parents watched us go through our routine. Then they came over and began asking us questions about their baby. We introduced them to our Sarah.
Every now and again our inexperience became abundantly clear... like the evening we ran screaming for a nurse because Sarah was leaping rhythmically. We thought she was convulsing. The nurse took one look at her and the panic on our faces and said, “Hiccoughs.”
When she was 24 days old, we were taking her home again. We were very nervous and excited about it. Her doctor assured us, “She can be treated like a normal child her age, except that you’ll give her phenobarbital three times per day.” Then he added, “You know, by everything I know medically, this child cannot be alive. Her salt levels were too high, the seizures should have caused brain damage, her kidneys and liver were all malfunctioning.... She should not have lived, and if by a major miracle she did live, the most we could have ever expected (medically) is that she’d be a total vegetable. But look at her! We’ve checked her all out and her left hand MAY be slightly weaker than her right hand. That’s all we can find wrong and we’re not sure of that.” He paused for a minute and added,”There must be something bigger than medicine.” Amen!!
“We are the clay, You are the potter: we are all the work of Your hand.” Isaiah 64:8b
Some people think that they would like to look into their future and see what is in store for them so that they can prepare for it. In my case, I am very glad that I could not. I shudder to think of my reaction, before I came to know Jesus, to the news that I would nearly lose my first baby ten days after her birth and that she would be handicapped as a result. Knowing me, I would have tried to figure out how I was going to manage the rest of my life and I would have scared myself beyond belief. I have always tended to be a worrier. I try to fool myself by saying that I am just trying to anticipate things or plan ahead, but actually I am trying to carry tomorrow’s load today. That’s called worrying.
Now, with hindsight, I can see the beautiful plan that the Lord used in laying out my life to prepare me for the road that I would travel. It is good that He didn’t warn me of what was to come. I doubt if I would have been able to understand how powerfully He can meet our needs.
I grew up in the house that my father and mother built in 3 ½ acres of woods in the middle of an 11 acre section of woods, about half way between two small towns in Upstate New York. My whole family worked the year that I was in second grade to clear the land. Even my brother (who is 3 years younger than me) and I helped by cutting branches off the trees that Dad cut down. Once, at our request that we be allowed to help, my folks marked the kitchen floor with 4" squares marked in chalk. We were given a bucket of nails and told to nail down the sub-flooring everywhere the chalk lines crossed. Our family did lots of things together. Mom and Dad went sledding with us, took us family camping and in general, encouraged us to be us. We were (and still are) very close. My Mom was very sensitive to my moods. On one occasion, when I was feeling exceptionally ugly and plain (in my teenage days) she suggested we go downtown and buy a little makeup. I hadn’t told her how I felt; she just knew. Both of my parents were always available to give us (both) a hug or a kiss or a word of encouragement whenever we needed it. As much as they believed in positive reinforcement, they also believed in discipline. They let us know, in very definite terms, when we were out of line. But from the time that I was very young, they always told us that they disciplined us because they loved us. We could count on being forgiven when we apologized as quickly as we could count on being disciplined when we were wrong. My first blessing has been having the family that I had to grow in.
I have been told that I am aggressive, sometimes the not-so-polite (though probably more truthful) term “stubborn” is used. I grew up in a rural area. There were not many children and I was the oldest of our neighborhood group. I grew up playing touch football with the boys. I was heartbroken that I couldn’t play Little League because I was pretty good at baseball, at least in our neighborhood. I was involved in Girl Scouts, and band at school. (I played oboe in concert band, saxophone in marching band.) I went to Sunday school every week, but somehow missed the point that Jesus could be my friend. I seldom went to church.
As we grew up, we had a special relationship with a family that had a boy with Spinabifida. Brian was a special individual. John (my brother) and I liked him - in fact his whole family - from the start. He had three brothers. His mom and dad included him in all of their plans. He went to the lake, to their camp, whenever they went waterskiing. Sometimes our family would go too. His dad made an aquaplane for non-skiers to sit on and be towed by the boat. (Being a basic chicken, I liked that.) In 1967, both our families went to Expo ‘67 in Montreal. Brian could walk, but this was one of the rare occasions that he chose to use a wheelchair. The first day, some of us were a little apprehensive about pushing a wheelchair around in the crowds. But the first day, we discovered that we could avoid having to wait in the long lines if we did, because people would spot the wheelchair and he’d get to go right past the lines into the pavilions. After that, we “fought” over pushing Brian. As I watched his family handle Brian and his problems, I wondered - Why God? Why, does a neat kid like Brian have to be that way? Why does his family have to work so much harder than other families? (I didn’t know that He was showing me that having a handicapped child was not the end of the world. In fact, when the doctors told me that Sarah would probably be handicapped - when she was about 2 weeks old - the first person I thought of was Brian. “Handicapped”, the Lord had already defused that word for me. Brian was “handicapped” and he was great.)
In the fall of 1968, I started classes at the State University College at Oswego (S.U.C.O.) New York. My best friend, Vickie, was going to attend Rensselear Polytechnical Institute (R.P.I), just outside of Albany, New York. Vickie and I were best friends from seventh grade through eleventh grade, when her parents moved to Florida. She and I had everything in common except “smarts”. She would have been our class valedictorian - had about a 99 grade average throughout her high school career. She had a scholarship to R.P.I. and planned to become a lady engineer. At least that’s what I thought.
Since I knew that it would be an extraordinary trip to go to Florida for Thanksgiving vacation that year, and because I missed her so much, I decided to invite Vickie to spend Thanksgiving with our family. I called the operator at R.P.I. and asked for her telephone number. To my amazement, they said that she was not a student there! In my usual style, I got panicky - only death would have kept her from her goal as a lady engineer. It was a death of a sort. A few weeks later, in answer to my panicky letter to her, Vickie wrote and told me of her “rebirth”. She had accepted Jesus into her heart and He had told her not to go to college, but to start a new life in Him. She was in St. Louis, because “Jesus had told” her to go there. I was confused. I thought Jesus was dead - oh, sure, He rose again, but He’s in Heaven, “sitting on the right hand of God.” I didn’t understand. Vickie was so smart. I hoped that God listened to our prayers, but how could He “talk” to someone today? That was far out, too far out for me. It was really bugging me, so I went to one of my professors - a psychologist, who seemed to be THE person to talk to if you had a problem. I gave him Vickie’s letter to read. A couple of days later, he invited me to his office and told me that she was seriously ill. She definitely suffered from schizophrenia and needed a lot of professional help. I was terrified and heartbroken. From the sound of her letter, she sounded so happy. I knew that she’d never get the kind of “help” that he said she needed. For a couple of days, I felt like I had lost my best friend for good. I mourned my loss. (I thought that the Lord had taken my friend from me. It would be years later, when I too became “born-again” that I would realize that we would not only become friends again; but more than that, we’d become sisters - in Christ. In 1968 I would have never believed that.)
There was another time when I didn’t handle reality very well. It was in the fall of 1970. I was starting my junior year in college; studying to become a teacher. So far, I hadn’t even seen a single student. I didn’t even know if I’d like teaching. So I decided to volunteer to help out in the campus school. A friend of mine, said that he was working with the mentally retarded children in the campus school and volunteered to introduce me to the lady in charge. For the first couple of days, I just watched. These kids were severely handicapped. Many could not even feed themselves or talk. I fell in love with them through the one-way glass of the observation window and couldn’t wait to get started. Soon I was spending as much time as I could over there. I loved working with the kids and found even the smallest success very exciting.
Then one day, as I got on the elevator of my dorm, I got in with the girlfriend of the friend who had introduced me to the class. She said something like she couldn’t imagine working with those kids. I thought she meant because some of them weren’t very attractive - at least to people who can’t be bothered to get to know them. But she went on to explain that she couldn’t stand to work with kids who were dying. I nearly fell over. I had no idea that any of those kids were dying. I asked my friend and he confirmed that some of the kids would not have “normal” life expectancies. I was crushed. If there was a God in Heaven: why did He create people like that? Why did He have to give them such “shallow” lives? Some of those kids would never have the time to learn even the basics of living! It wasn’t fair. I couldn’t find any answers. I stewed about it for 3 or 4 days and decided it wasn’t worth it. It hurt me too much to think of continuing working with those kids. I looked only at myself, not at their needs. I decided I had learned what I set out to learn anyway -- I did like teaching. I would put the rest out of my mind and go on with my life. I told the lady in charge of the class that my schedule had changed and I could no longer help her. I was too chicken to even admit the truth to her. It was Not one of my finest moments.
It was in 1970 that I met my future husband, Allen. Up until the fall of 1971, we only knew each other’s names. But in the fall of 1971 the new co-ed dorm opened up on campus. As “luck” would have it, Allen and I ended up living on the same floor - only 4 rooms between his room and mine. “Coincidentally” our class schedules were quite similar, not in content, but in where they were on campus. So he had classes on the far side of campus about the same time as I did. As a result, we ate meals together and walked back and forth across campus together. Soon we found that we could be very good friends. Not long after that, we knew that we were really in love. By Thanksgiving, we were engaged. We had no idea when we would be married, probably sometime the next summer or the following fall. Allen planned to graduate in June of 1971.
A sociology professor that we knew told us about a program he was starting called “Criminal Justice Intern Program”. The idea was that college students would get interested in police work if they could spend some actual time with police officers on duty. It was hoped that more college graduates would get interested in police work. We both signed up for the program. It sounded interesting, and participants would receive $100 per week to be in it. With that money, we could afford to get married.
As it turned out, we found out the week before the program started that we were accepted into it. We scurried around and managed to get married on Sunday, June 13, 1971 at 2 p.m. and started work in Syracuse at 9 a.m. on Monday, June 14. We both loved our jobs that summer.
In the fall of 1971, Allen was hired as a Campus Police Officer at S.U.C.O. He made his first arrest during his first month on the job. He arrested a burglar who was 6'3" tall and weighed 230 pounds. (Allen is 5'8" tall and was a slim 140 pounds.) Suddenly I realized that he could get hurt doing that sort of thing. I worried about him. I prayed for him, but I had no real peace that my prayers were being heard. Allen seemed so calm. He wasn’t afraid of dying. I didn’t understand, but I didn’t ask him why either. In the spring of 1972, I graduated from college. We bought a small house in the City of Fulton, about 15 miles from Allen’s job. Actually, we had lived in Fulton for a whole year and still knew no one. I decided that maybe the thing to do to meet people was to go to church. We visited the church at the top of the hill at the end of our block. It was the same denomination as the one I had grown up in. They found out that I was an unemployed school teacher and decided I was what they needed for the Sunday School. I loved it. I had lesson plans already in the curriculum that they gave me. Allen went to the adult class. He wasn’t as thrilled. It turned out that he knew a lot more about the Bible than I had ever guessed. He had known Jesus personally for more than 10 years. That’s why he was so unafraid of death and so calm about his job. That’s why the adult class bothered him. He’d quote chapter and verse to support his point of view and other members of the class would say, “Oh, we don’t accept that verse.”
One Sunday, as we walked down the hill on our way back home, we talked about his class. He said one lady had actually said she believed just about everyone went to Heaven. He was shocked. I said that sounded pretty good to me - which started a discussion that lasted right through the front door of our home. Finally it was decided that I would read the Gospel of John and find chapter and verse to prove my point. “Unfortunately”, as I sat down with my determination, I hadn’t counted on the Holy Spirit getting into the argument. I discovered I was wrong. I discovered Jesus was not only alive, but waiting for me to decide to get to know Him. I reacted in my typical style and got frightened. What if I let Him down? Now that I knew He was real, it meant that Hell was real too. What if He asked me to do something that I couldn’t handle? After a few days of deliberation in my heart, my mind was made up. I decided to give Jesus a chance. Then the peace of the Lord flooded in.
One of the first things I did was try to contact Vickie again. I found that she was still following Jesus. She had married a missionary and Jesus was taking care of them in a very special way. She was still light-years ahead of me in faith. We rejoiced in the truth and laughed at the thought of being schizophrenic. To someone who looked at our “new lives in Christ” in an intellectual analytical way, the idea that anyone who accepts Jesus into his life becomes a “new creation” would sound like schizophrenia. Vickie would teach me a lot about Jesus. I thank the Lord for her.
During the next few years, Allen and I would begin to learn to lean on the Lord. I found that I could pray for Allen before he left for work and know that Jesus would hold him in His love and care. We found that when we had needs, we could pray for them and get answers. So, you see, all the procedures we would need handle Sarah, were set up, in place and working before she came along. The doctor in the Neonatal Intensive Care Unit was right. There is something - or rather Someone - bigger than medicine. We had no idea just how big, but we were about to learn in a dramatic way.
“And we know that all things work together for good to them that love God, to them that are the called according to His purpose.” Romans 8:28
For 14 months we lived in ignorant bliss, not realizing how far behind Sarah was getting. At 14 months she could not sit up unaided. Her new pediatrician, Dr. Trust, propped her up on the examining table, “You know, I think her left side is drooping. Don’t you?” I thought so too, so did his nurse and his associate. So, he made an appointment with the Cerebral Palsy Center in Syracuse.
Then began a battery of new tests. We saw four doctors - a pediatrician, a neurologist (one who had seen Sarah as an infant in Upstate) and an orthopedist, plus a psychologist. The psychologist attempted to give Sarah’s mental age. There were a number of skills to be tested in the psychological testing at each age level of the test. For most children, they reach a level where they “plateau out”. They reach a level at which they can no longer do any of the tasks. In Sarah’s case, she did all of the tasks that required one hand, none of the two handed tasks. That meant that she could only do about half of any of the skills on any level, but at 14 months, she did half of the skills up to 24 months when we ran out of time. The psychiatrist was a little concerned with how to grade Sarah. She said it was an unusual score.
After the doctors came the therapists - a physical therapist, occupational therapist and a speech therapist. Everyone was in agreement. “Sarah has a mild form of cerebral palsy.”
I felt my heart sink. My brain pictured a shriveled child in a wheel chair. “What does that mean?”
“It means that her left side is weaker than her right. We have to determine the extent of the damage and work to over come it. Cerebral Palsy is a condition caused by any kind of brain damage which produces a loss of muscle control. It can be caused by any number of things.” The pediatrician was patient and gentle as he spoke about how we’d proceed. We found that we could still praise the Lord. C.P. is not progressive. We knew that we could live with what we had.
Brain damage had always meant mental retardation to me. I asked, “What are the chances she’ll be retarded?” His answer was not very specific, but the best he could do, “At this point, we see no evidence of that, but it’s hard to say now. Some children with C.P. are very intelligent.” We decided we’d deal with that when we got to it.
We began to set up therapy sessions which meant driving into Syracuse several times each week. At first it was difficult because Sarah didn’t to cooperate with the therapists.
She had already devised many ingenious ways of coping with her handicap and had formed some bad habits. For instance, she’d carry a full 8 ounce glass bottle of milk around in her teeth so that her right hand would be free to play with things.
She could stand in a walker because it gave her support she needed. So she learned to walk in a walker before she learned to crawl. One day she wanted a toy on the floor. She pulled her walker right up beside it, so it was on the right side of the walker. Then she tipped her entire body over the right side and hooked her legs and feet under the left side of the walker - so that her body cantilevered out to the right. From there, she could grab the toy and haul it in.
Once she stepped on the inside of the end of a rectangular shaped box, so that it stood on end and she could grab it.
In therapy, she cried. She’d scream while her therapists put her through her paces. I’d watch from a one-way window. All of the therapists agreed that she was very strong and very smart. When screaming and crying didn’t work, she’d try other schemes to get out of therapy, even resorting to countless kisses and long hugs to distract the therapist’s determination. After a while, she relented and began to submit to their work with her. I was allowed into the room to watch. Within two months she was not just crawling, but walking too.
At age 12 months, her neurologist, at our pleading, decided we could wean her from phenobarbital. By mid-February of 1977, she was completely off phenobarbital and more alert and active than we’d ever seen her.
“But God hath chosen the foolish things of the world to confound the things which are mighty;” I Corinthians 1:27
April 5, 1977
My diary read: Sarah, age 1 year 6 months, was eating so slowly that we decided to see what was taking so long.
She had sorted her Fruit Loops by color - red in one pile, yellow in another. (Orange she counted as red.)
When we told her therapists, they were amazed.
“God is our refuge and strength, a very present help in trouble.” Psalm 46:1
Things were going so well we decided to try for the second child we’d always wanted. In October 1977, it was positive. We were having a baby in May. Everyone rejoiced with us at the possibility of Sarah becoming a big sister.
January 1, 1978, we were on Long Island, visiting Allen’s parents. At about 8 a.m. we woke up. Sarah (29 months old) was in a port-a-crib in our room. She sat up, then tipped over, lifted her left arm and began to tense and relax in rhythmic jerks. Soon her entire body was convulsing. It was the first seizure we had to handle alone, the first in two years. Realizing that most seizures last only a few minutes, we forced ourselves to wait before starting to the hospital. The panic began rising within us.
Quickly we threw on clothes. Allen’s mom heard us racing around and threw on some clothes too. Allen’s dad worked for the Department of Public Works in their town. He had gotten up at 5 a.m. to run the street sweeper, then had come home and gone back to bed. His car was parked right down in front of the apartment building. We shouted at him for his car keys and ran out the door, leaving him sitting up in bed blinking and wondering what had happened. We hadn’t taken enough time to explain, only that Sarah was going to the hospital - FAST.
It was a cold damp morning and the car didn’t want to go from a cold start to racing through the morning streets. Fortunately, being New Years morning, there was not much traffic out on the streets yet. The car coughed, sputtered, and threatened to stall at each corner. This combined with the fact that Allen’s mom wasn’t exactly sure where the nearest hospital was, made it a hair-raising trip. Finally, the car began to warm up and move when Allen’s mom said, “There it is, back there.” We had passed the hospital.
The emergency wing was being rebuilt. The door marked EMERGENCY was locked. Fortunately, a police man came out an unmarked door and said, “Go in here.” On the other side of the door we found ourselves in a maze of half constructed hallways without a clue as to which way to go. Allen ran ahead of me, searching for the emergency room. Sarah was rigid and trembling in my arms. I was yelling for help as I ran. All I could hear was the echo of my own voice.
When we finally found the examining room and put her down on the table, the doctor came in and said, “This child is seizing. How long has she been doing this?” By this time, about 20 minutes had passed since 8 a.m. It seemed like much longer.
The doctor began to give orders. Slowly a nurse stripped Sarah, got a hypodermic needle and an iv tube. I began to feel faint and got chased out of the emergency room. I sat crying with Allen and his mom in the hallway. Then I tried calling Sarah’s pediatrician. He said to calm down, it was only epilepsy. (And for some reason, that did calm me down. I thought, oh, it’s only epilepsy, we can deal with that.) Then he gave me some suggestions for the doctors on her case.
I went back into the emergency room. Sarah was still seizing. I gave the doctors the list of drugs he suggested to use in treating her. When I finished, the doctor said, “We already did that.”
It was shift change. There were two doctors standing there staring at my child as she twitched uncontrollably on the table in front of them. They were speaking in thickly accented English, so they were difficult to understand. They were trying to decide what to do next. One would say, “We can’t give her more medicine. Her breathing might stop and we can’t resuscitate her here.” Then the other would say, “I know, but if we don’t stop the seizure soon, that could kill her too.” They gave her another injection and waited.
They had wanted to start an iv, but her arms were so small and her veins so tiny that with the convulsing it was very difficult to get one started. They’d put the needle under the skin and start the iv Her blood would flow under her skin. They’d say, “She’s blowing up again.”, take the needle out and start again on the other arm. When they ran out of arms, they’d take each hand one at a time. Then they’d go back to her arms. All this time, Sarah shook. For an hour and a half, she shook.
When I understood that they wanted to admit her, I called our pediatrician again. He was from Long Island originally, and as a professor at Upstate Medical Center in Syracuse, keeps in touch with the doctors down there. He recommended that we have her transferred to North Shore Medical Center.
As soon as we told the doctors in the emergency room that Sarah would not stay in this hospital, but be transferred to North Shore; Sarah was moved into the hallway, still seizing. In the semidarkness, the doctors took some more time to try to insert an iv They’d try for a while and leave us alone for a while. We were waiting for an ambulance with a doctor from North Shore to come get us. I prayed it’d come quickly.
Finally, Sarah stopped seizing, at about 10 a.m. The doctors finally inserted an iv in her hand. Both arms were black and blue for a distance of about 4", starting just above her elbows and extending down her arms. The tops of both hands were black and blue.
As we waited, janitors and maids came through the hall clattering, mopping up the floor and picking up laundry. A stream of new patients (mostly skaters who’d fallen on arms and heads), paraded past us. The door, down the hall and around the corner, opened and closed with a jolt; causing a gale to blow past us each time. Sarah had only a sheet over her. People coughed and wheezed and lurched around us. We had to warn them not to bump the iv
A little after noon, the ambulance arrived. We met a pretty female doctor who took charge immediately and got us out of that hallway. Praise the Lord! We headed for a medical center, hopefully like Upstate.
We knew that a seizure that lasts more than 10 minutes can cause further damage. We were concerned about more brain damage. Once Sarah was safely admitted to North Shore, we went back to the apartment. In the bedroom, I picked up the little outfit I had laid out for Sarah to wear that day and began to wonder; would I have the same Sarah to take home or had her brain been totally destroyed this time. I began to cry. Allen put his arms around me and told me not to worry.
Sarah spent the night sleeping in the pediatric intensive care. She had been given an unusually large amount of medicine at the first hospital and was unconscious most of the night. We were not allowed to stay with her or even visit her for more than 15 minutes at a time - not quite like Upstate.
The next morning when we got there, all the nurses were talking about how strong Sarah was. They had had trouble with her when she woke up during the night. She wanted to play and carry on. They had been forced to restrain her. She was in a harness, tied down to the crib when we went in. She was on her stomach - a feat the nurses said was next to impossible. She had been tied down on her back and had somehow managed to turn herself over. It was then that we knew that the Lord had protected her again and that she would get better.
After 48 hours of observation, Sarah was once again ours. She was her own self with one exception - she was taking phenobarbital again.
“The Lord is my light and my salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid?” Psalm 27:1
One winter night I had an awful dream. I dreamed that it was night and snowing like mad outside. Sarah started to seize, convulsing wildly. It was one of those nights, typical up here near Lake Ontario, when you can’t even see the hood of your car, much less the road.
In my dream, we called an ambulance. They were extremely apologetic, but they couldn’t risk life and limb to come to get Sarah - it was impossible to drive in snow like this. Even the snow plows weren’t out in this mess. There was no way to see. They were very sorry. If it let up, they’d give it a try. It didn’t let up.
In my dream, Allen paced the floor, then went out and tried to dig out our car. He was crying. It seemed so real. I didn’t realize that I was crying until Allen woke me up, “Barb., you’re crying in your sleep. What’s the matter?”
It was a relief that it was only a dream, but it stuck with me. I began to wonder if it could have been a vision of some kind. Was there any way it could come true? At the time, I didn’t know how to test spiritual things. “...the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Galatians 5:22"
For a couple of weeks, every time it snowed, I got an uneasy feeling in the pit of my stomach. Each time, I prayed for her protection and decided intellectually to trust Him to take care of her. Still, the fear grew a little each time and became more and more difficult to put out of my mind.
Finally, I asked the Lord to deal with the dream itself and to give me a peace about it. Almost immediately I remembered another dream that I’d had. I remembered that we’d planned to visit my aunt and uncle in Hyde Park, New York (on the Hudson River). My uncle had a 32 foot Owens Cabin Cruiser - his pride and joy. He loved to take people out on that boat. I used to love to go out on it with them.
In that dream, I had dreamt that we had been invited to go out on the boat. We went up the river to a place for dinner. On the way back the lights on the shore were beautiful. It was a balmy evening. Suddenly the boat hit a log in the river and began to sink. Allen is not a great swimmer. I remembered waking up from that dream sweating - thinking I had to choose between rescuing Allen and saving Sarah, who was an infant at the time. We were soon going to make the “big circle” as we called it - going from here to my folks’ house, to my aunt and uncle’s, then on to Connecticut to see the rest of our relatives and introduce them to the new baby. Up until the night of this dream, I had been excited about the trip. After that night, I dreaded the thought. How would I decline a boat ride? As the time grew closer, I really began to fret.
When we got to Hyde Park, I was pleasantly surprised to find that we were having picnic dinner at home. After a lot of delicious food and comfortable conversation, I finally got up the nerve to ask about the boat. Did they go out on it much any more? The answer? My uncle had sold his boat TWO YEARS BEFORE!!
Oh, Lord, How could I be so foolish? Please forgive me for letting my imagination run away with me - again. I decided to “file” the snow storm dream with the boat dream and not bother with either one anymore.
“Shout for joy to the Lord, all the earth, serve the Lord with gladness: come before Him with joyful songs. Know that the Lord is God. It is He who made us, and we are His: we are His people and the sheep of His pasture.” Psalm 100:1-3
About a week before our second child was born, we were talking about names for “it”. Allen liked the name Ruth for a girl. I liked the name Rebecca. Allen didn’t like Rebecca, because he didn’t want her called Becky.
Sarah was sitting on the floor, playing quietly. I asked her, “Sarah, can you say Ruth?” She gave it a try. It came out “Oof”. Then I said, “Can you say, Rebecca?” She fairly sang it, “Becca, Becca, Becca.”
We didn’t talk about the name again until we were on our way to the hospital and my contractions were about three minutes apart. Allen said, “Well, what are we going to call this kid?”
I said, “I thought we’d wait to see ‘it’ first.”
He said, “Well, if it’s a girl, I’m coming around to Rebecca, but you’ve got to promise me that she won’t be nicknamed. O.K.?”
So that’s how Rebecca got to be named Rebecca. I think Sarah had a lot to do with it.
Rebecca was born on May 30, 1978. She was beautiful; looked a lot like Sarah had when she was minutes old. In fact, later, when we put their hospital pictures together, they looked like twins. (The camera men captured both of them with the most horrible frown!) Unlike Sarah, Rebecca took to breast feeding very easily. She was a quiet baby too. If she was fed and changed, she was very content. I found myself thinking, Sarah should have been able to have a start like this. Oh, the foolishness of human wisdom.
“The Lord will keep you from all harm - He will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalm 121:7,8
Sarah spent two years in the Cerebral Palsy Center’s Early Development Program. At first I had to drive her, which meant that five days per week, we’d pile into the car with Allen at 7:15 a.m. and drive him to work. (He works about 15 miles in the opposite direction from home and the Center.) Then the kids and I would drive into Syracuse. Rebecca and I would wait for Sarah (3 hours) then we’d drive home. At 4 p.m., we’d drive back to Oswego to get Allen, then back home again. In the winter, it was a tiresome, terrifying trip. On several days we’d join in a caravan of cars going bumper to bumper on icy Route 481. We were going bumper to bumper so as not to lose sight of the car ahead in the blinding snow.
The maddening part was that busses already drove down to the Center from our area each day. We’d follow them down and follow them home. Our problem was that Sarah hadn’t reached the magic age of three. If a child is three years old or older, then New York State Law requires she be bussed to special classes. In order for a bus to stop and pick her up, papers had to be filed with Family Court. Unfortunately, our family court judge didn’t believe in therapy for children under the age of three. You could get 5 or 6 doctors to agree that your child needs physical, occupational, and speech therapy, but if you couldn’t convince the family court judge, the court order to stop the bus couldn’t be gotten. In our case, the judge refused to even talk to us about it. We couldn’t even get an appointment to see him.
I began to pray as I drove to and from the Center. Sometimes it was really scary. Transportation for Sarah looked like an impossibility. Then, once again, the Lord came through. Someone “goofed” and Sarah’s transportation got approved. A marvelous cab company picked her up at the house and drove her into Syracuse for us. Then, three hours later, they brought her home again. Sarah loved the drivers. They loved the kids they transported too. Sarah got so independent, she’d buckle herself into her car seat and wait for the driver to come pick her up.
“Regard not them that have familiar spirits, neither seek after wizards, to be defiled by them: I am the Lord your God” Leviticus 19:31
One of the biggest mistakes we made was not taking seriously a “familiar spirit” in our own home. The Bible makes it quite clear that there are only two kinds of spirits here on earth - the Holy Spirit (and angels) and spirits (demons) who oppose the Holy Spirit. Our problem was that although we were Christians (Allen was born again in high school. I came to know the Lord in 1972.), we hadn’t realized the value of a time for daily Bible reading and devotion each day in our lives. Since the Word of God is the only offensive weapon in the armor of the Christian (Ephesians 6:14) we were unarmed in a struggle against “the powers of this dark world and against the spiritual forces of evil in the heavenly realms.” (Ephesians 6:12)
We had bought our home in 1972, from a young couple who had only lived in it for one year. They sold it for $500 less than they had brought it. The deed indicated that the house had had four different owners in the five years preceding our buying it.
One of the first weekends we were in our house, we were startled from our sleep when the closet door began buckling and banging on its hinges. It made a sound like a water hammer for about 30 seconds and then stopped. Allen looked at me to see if I had heard what he had heard. Then he cautiously went to investigate. We could find no reason for the noise. There were no water pipes in that side of the house, so that could not have been a cause.
Twice in one weekend, the pipes under my kitchen sink were not only uncoupled, but pulled apart so that the water from the sink ran all over the floor. After the first time, Allen used a big wrench to tighten the pipes together, so they could not have slipped.
The timer on my stove went off at odd hours of the morning. We’d be awakened at 3 a.m. to the buzzing sound. The timer can’t shut itself off, so I’d have to get up and go down and turn it off. The timer could only be set for five hours, so I could not have accidentally left it turned on.
We’d hear doors upstairs slam shut. Thinking a breeze from the open windows had blown it shut, we’d go up to open them and find them open wide. The cat would race to that room at the sound of the crash, then hunch up and stand outside, afraid to go into the room.
We’d hear footsteps at night in the hallway, when “no one” was there. The week that Sarah was born and my mother was here, she had an experience like that. She mentioned it to us. We remarked that it hadn’t been us, that it was probably the “ghost”. She said that for sure she’d check it out if she heard it again, because now that she’d mentioned it to us she wanted to be sure we weren’t going to play tricks on her. The next night she heard me walk Sarah downstairs because she was so fretful. Then Mom heard footsteps in the hallway again and thought that Allen had gotten up. But the footsteps went into our spare room. She was sure Allen was trying to scare her, so she decided to follow him. When she opened the door to the spare room and threw on the light, there was no one there. Allen was still sleeping in our room. He hadn’t heard any of us get up.
One night I woke up to find Allen sitting straight up in bed staring down at me with his eyes bugged wide open. He said that he thought he saw me walking around the foot of the bed. He saw a lady dressed in white, her hair was Buster Brown length, but sometimes I put on my robe with my hair tucked inside so he thought it was me. Then he realized that I was asleep beside him and for a second, he didn’t know which was me. He thought, if Barb. is at the foot of the bed, who’s in bed with me? About then, I woke up and saw the peculiar look on his face. Then the white lady faded away.
It became a novelty of sorts, living in a “haunted” house. In fact, whenever we heard a strange sound, we’d attribute it to the “ghost” and forget about it. We had no idea that “it” was hurting anyone. It was a conversation piece.
In 1979, we began going to a Pentecostal prayer group in a friend’s home. One night, one of the ladies in the group said they had had an “unclean spirit” in one of their apartments. She said it had manifested itself as a “white lady”. We had not told them about our “ghost” because we’d thought they’d think us crazy. That night, Allen and I could barely sleep. As difficult as it seems, for the first time we realized that the spirit in our home was not of the Lord and might even be dangerous.
The next day, Sunday, we got up early, sought out all our books on the occult (astrology, etc.) and burned them. We called our friends in Full Gospel Businessmen. The brothers were meeting the next night. Allen invited some of them to come over after the meeting to help us “clean house”.
As soon as the arrangements were made and we were sure they were coming, I began to worry. What if there was nothing here and we looked like fools? What if there was something here and it got mad and started hurting people? Fortunately, we didn’t have long to wait.
The guys came the next night, about half dozen of them. They went room to room, starting in the cellar and working their way up to the attic. They didn’t even skip any closets. As they went, a cool breeze fled before them. They’d bind it in the Name of Jesus and cast it out of the house.
After the house was clean, the brothers prayed over us. I felt like laughing as they prayed. I felt terrific, like a cloak of depression and worry had been lifted from me. A spirit of fear had definitely gone.
A couple of weeks later, my parents came for Thanksgiving dinner. My mom remarked that the house felt much warmer. (She didn’t know that the spirit was gone, but she could feel the change in atmosphere.) What’s most amazing is that people who believed in the ghost, who had had experiences with it, have trouble believing that the Holy Spirit could cast it out once and for all. The typical response is, “You cast it out?....And it went?”
“Greater is He who is in me than he who is in the world.”
I John 4:4
“I can do all things through Christ, who strengtheneth me.” Philippians 4:13
On September 8, 1978, I woke up with Allen at 6 a.m., made his breakfast, saw him off to work and went back to bed.
At about 9 a.m., I awoke to sounds of Sarah waking, but she didn’t call out to me like she usually does. When I went to check on her, she was convulsing.
I called an ambulance and bundled up Rebecca to get ready for the trip. At the hospital, Dr. Trust administered the drugs which stopped the seizure after 30 minutes. He had Sarah hospitalized for a couple of days of observation. Since she was already being hospitalized, he used the opportunity to do some testing that he’d wanted to do before. The tests were to determine if she was growing normally. She was on the small side of the scale for a child her age.
Again, the Lord watched over Sarah and she appeared to suffer no ill effects from the seizure. The next couple of days, the elderly patients in our small hospital would be asking, “Who was that little girl in the big pink slippers racing down the hall?” One old lady who was doing a lot of crocheting during her stay told me that she didn’t mind Sarah’s antics at all. “She livens up the place!”, she smiled.
On September 21, Rebecca had a four month check up. She seemed to me to be growing so fast and doing so well, that I was more interested in asking Dr. Trust about the tests that he’d done on Sarah the week before.
Finally, in a very quiet voice, Dr. Trust turned to me and said, “I know that you want to talk about Sarah, but now we must talk about Rebecca.”
I could feel the seriousness in his voice. I half whispered, “All right.”
His words fell like lead on my heart, “Her head is growing too fast.” He told his nurse to tell x-ray to be ready, that we’d be up in a minute for a certain procedure. Then he explained to me that he thought the fluid inside her head wasn’t draining like it should and so was building up pressure in there. If so, it would show on the x-rays.
At first I panicked. I thought, dear Lord, pressure on the brain, more seizures, and more brain damage. Here we go again.
By the time the x-rays were taken I was numb. I was sitting on a bench outside of x-ray. Rebecca was screaming in the next room.
The nurse brought her to me and Dr. Trust sat down quietly beside me. He was just looking at me as if he were studying me to see what I was thinking.
So I said what I was thinking out loud. “Some people have kids who get ear infections or break bones. I have kids with brain trouble.”
He smiled, patted me on the head as if to say, “You’ll be alright” and walked off. (He had already told me that he’d let me know the results of the x-rays as soon as he had them.)
I went home and called Allen. As I told him the news I broke and began to cry. Couldn’t he please come home?
After I hung up the phone, I got angry, really angry. I began to yell at the Lord at the top of my lungs. I told Him that I’d had enough, that this was too much and I couldn’t handle any more. If He was going to put me through all of this, He was going to have to do something to get me through it. I had had it.
Then, I stopped crying. All of a sudden it was like someone threw a switch and I was at peace... that peace that passes understanding. (Philippians 4:7)
Allen came home and found that I was calm and ready to organize how we’d manage the surgery. I began to freeze breast milk to take to the hospital, to label cabinets and to clean the house. I called my Mom. She wanted to know if we lived on a Love Canal or something. Of course they’d help out in any way we needed. Just let her know when we needed her. (My mom is a very special lady, blessed with the gift of encouragement which she uses generously.) I’d have to get everything back the way it was when I left here to give birth to Rebecca.
Allen and I talked a little. He said that he was sure that Rebecca would be alright. He couldn’t say exactly why, but he was not worried at all about her. (He had that Peace of the Lord too.) After we talked, Allen decided I was fine and went back to work. When he got to work, his secretary was crying. She couldn’t believe this could be happening to us too.
Dr. Trust ordered a C.T. scan (like a super-x-ray, that can take pictures of cross sections of the brain. When they are put into a computer and color enhanced, they can tell exactly what is collecting and where inside the head.) We went to Syracuse for the test. Then we had to wait.
Dr. Trust called and said the C.T. Scan confirmed his suspicions. It showed a mild form of hydrocephalus and he was calling a neurosurgeon to follow up the case. We should expect a call from his office in a day or so.
Fifteen minutes later the phone rang. It was the neurosurgeon’s secretary, ready to make our first appointment.
“But my God shall supply all your need according to His riches in glory by Christ Jesus.” Philippians 4:19
On October 6, 1978, we met Dr. Lourie for the first time. He is a pleasant man, with a slight southern accent who is gentle and methodical in his movements. He’s so precise in what he does that he gives the illusion of moving slowly, but he’s extremely thorough. We were very impressed.
He told us that Rebecca’s hydrocephalus is a very mild kind and that there was still a slight possibility that her head could develop alternate drainage, if it were left alone. If we were to put in the shunt now, it would relieve the pressure that could force the alternate drainage to develop. The trick was not to wait too long. That could result in brain damage. We agreed with him to wait four or five months if necessary, but to watch her very closely for adverse symptoms and to have her head measured on a regular basis and examined by him.
“Have you noticed any difference between her development and her sister’s?”, he asked casually.
“Oh, sure.”, we answered automatically.
Suddenly, he became very serious, “In what ways?”
Then we realized that he hadn’t noticed that Sarah (who had been climbing over, under, around and through all the equipment in his examining room) was handicapped. So we took a few minutes to explain her medical history to him and assure him that Rebecca’s development greatly excelled her sister’s at this age.
I asked him about putting in a shunt. What kind of surgery would that involve?
“We make two tiny incisions here and here (he pointed to her scalp and near her navel). Then we insert a tube into her brain and run it under the skin to a place in the abdomen where the fluid can collect without harm. On little girls, we try to make the incisions as unobtrusive as possible. In three or four years the child will be big enough that a longer tube will have to be inserted and then that’s it. Unless there is some kind of problem, the child never needs surgery again.
For the next six months, once a month, I drove Rebecca in to Syracuse to have Dr. Lourie listen to her head and measure it. After all those years of driving Sarah, it seemed a little strange to be taking Rebecca (my healthy one) in to see a specialist.
Finally we could wait no longer and Dr. Lourie ordered a second C.T. scan before setting the date for the surgery.
Even with all the experiences we’d had during Sarah’s illnesses with answered prayer, we still had a lot to learn. The Saturday night before the second C.T. scan - the one to be used to plot the path of the surgery that was sure to come - the prayer group laid hands on Rebecca and prayed for her healing.
That Tuesday, we went for the C.T. scan. Dr. Lourie had told me that he’d call in a day or two to tell me when the surgery was scheduled. A day passed, then two. I was sure that he’d call me when he had the results, so I didn’t call him. The weekend came and went. The beginning of the next week began to slip away. Each day I’d say to myself, “If he doesn’t call me this afternoon, I’ll call him tomorrow morning.” I figured if it were real serious, he’d have gotten a hold of us. I knew he really cared about Rebecca now. We had seen him a lot. Finally, I called his office and he was out.
It was January 8, 1979 when I finally caught up with him. He said he couldn’t figure out what had happened. The second C.T. scan showed no change over the one taken in September. But he knew that her head had been growing; he’d measured it - at a rate of 1.5 cm per month. We made an appointment for January 19.
When he saw her then, he was amazed. Her head had only grown .2 cm that month and he took it as a sign for the better. He’d watch her for a few months to see if the trend continued.
Finally, August 21, 1979, Dr. Lourie decided he didn’t have to see Rebecca anymore. Her condition had “arrested itself” and her head was draining normally.
At a later check up, Dr. Trust would tell me that it is so rare for hydrocephalus to “arrest itself” like that, that doctors hate to even tell the parents there’s a possibility of it because it gets their hopes up.
Our Lord is so good.
“For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.” Romans 8:18
Sarah began to have severe headaches. They only lasted about a half minute or so, but she’d cry out and bang her head on the floor, or wall or with her hands to make it stop.
I took her to see Dr. Trust, who said he could find nothing physical to cause the problem. They were probably sub-clinical seizures (meaning seizures that happen within the brain itself). They were causing her great pain. When she pounded on her head or banged her head against something, she was confusing the brain and making the pain stop. It’s like the old joke, “If your hand hurts, let me hurt your other hand, then the pain in your first hand won’t be as noticeable.”
The treatment for subclinical seizures was not a different seizure medication, but large doses of aspirin or tylenol to mask the pain. Since we never knew when she’d have a seizure, we’d have to give it to her continuously. It was not an appealing solution, but she suffered from terrifically painful headaches several times per day.
We noticed that certain sounds seemed to trigger these seizures. If I turned on the vacuum cleaner, she’d scream and grab her head. Certain guitar chords, even certain television commercials would have her screaming. The aspirin helped, but it wasn’t the answer, we knew.
We were supposed to be on a trial basis. Aspirin for two weeks, if no more headaches, then off the aspirin for two weeks. If there were more headaches then, we were to call Dr. Trust.
After a week of giving her aspirin, our prayer group prayed over her. The next day we didn’t give her the aspirin, but watched her very closely. When I got ready to vacuum, Sarah nearly bowled me over by asking if she could do it.
Not only did she vacuum the living room, we have pictures to prove it. We call them our Cinderella pictures. She hasn’t had a subclinical seizure headache since.
“How great is our God...”
“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving present your requests to God.” Philippians 4:6
During the spring and summer of 1979, I began to lose confidence in the Cerebral Palsy Center. Sarah had gotten a new speech therapist who kept insisting that Sarah was non-verbal. The problem was that Sarah wouldn’t talk to her. Sarah talked at home; granted, it took a little doing to understand some of it. But she was definitely communicating with me in her own language. I got so frustrated that I took out a tape recorder and taped Sarah naming everything in the room - table, chair, mitten, doggy, cushion, cookie, floor, door, etc., etc. When I sent it in, the therapist had little comment about the tape. She said that what counted was what went on in her therapy room.
In the late summer of 1979, the Fulton School District contacted us about putting Sarah into a new program for physically handicapped children. It would be in a normal school, with regular elementary students. (Better role models!) The children would have physical, not mental, handicaps and would be mainstreamed right into the school when ready.
We went to an introductory meeting at the school and were very impressed. The principal was an exceptional person. He seemed genuinely interested in individual students within his school. He promised us that whatever our children needed, he would do his best to see that they got it. The school was not far from our home - about 10 miles. That was a lot better than the 35 miles to the C.P. Center. Sarah would continue to get the therapies she was getting, but there would be a bigger emphasis placed on academics and her therapies would be incorporated into her studying. We were excited. It looked like the Lord was opening a door.
The C.P. Center was skeptical. They felt that we would be putting Sarah into a situation beyond her capabilities. They tried hard to talk us out of the idea. We had only one reservation. The teacher for the class hadn’t been hired yet and we couldn’t be sure what we’d get. We decided to give it a try and promised to go back to the C.P. Center if it didn’t work out.
When we met the teacher they hired, our fears were put completely to rest. She was young; fresh out of college. Did she consider that lack of experience a liability? Oh, no, just the opposite. She told us right off the bat, “Now, I’ve just graduated from college with a degree in special education and I concentrated in the area of physical handicaps. So you see, no one can tell me that these kids can’t do something. I’m too naive to believe that.” She smiled. I thought, “If this gal can turn what I might consider a liability, her lack of experience, into an asset; she’s just what Sarah needs now.”
The teacher, Maureen (the kids called her Miss D), had high expectations for the kids. We would soon find out that she also had the energy to see that the kids were helped to achieve their goals. This program would become one of our biggest blessings.
“The Lord is close to the broken hearted and saves those who are crushed in spirit.”
These little incidents all fall into the category of “Counting Your Blessings”. Before I begin this section, some history is needed. Once, when Sarah was going to the Cerebral Palsy Center, we were having a very disturbing time with her. Every time we gave her a cup of something to drink, she carefully poured it all over the table and then proceeded to look very pleased with herself. It seemed that no amount of firm talk could persuade her that she wasn’t to pour her drink all over the table. She seemed totally baffled at our lack of enthusiasm for the action. Within the next week, I happened to mention this “strange” behavior to her teacher. His response floored me, “Yes, isn’t that great!” Then, I learned that they were teaching her to pour in class. It was a skill that we should have been encouraging not trying to extinguish. The very next day, I bought a small notebook, which we had sent to school with her so that we can keep up with what’s going on in her schooling. We also, sent little notes of things Sarah may tell them about, so they could understand even if she didn’t express herself well. Then they could reinforce what had been happening at home too. We’ve found that it works out very well. Some of the experiences below, come from one or more of these little notes. The first has to do with the name that Sarah called herself when she was very young. For some reason, she called herself “Saddin”. We never knew why.
January 17, 1980 (Sarah had been in the physically handicapped class for about five months.) Her teacher wrote, “Today was the first day Sarah answered me by correctly saying her first name! I hugged her so quickly and she’s continued all day with the right name.” On that day, Saddin disappeared and Sarah began to emerge.
February 6, 1980 I wrote in the notebook, “Last night Sarah took off her clothes (except her shirts and I loosened her shoelaces). Then I tried something new. I put her pj’s (a blanket sleeper -- like Dr. Dentons with zipper up the front) on the floor upside down and backwards. Then I said, ‘Try putting it on like your jacket.’ BOOM! She put both arms in, flipped it over her head, slipped her feet in and zipped it half way up before I was asked to hold the zipper so she could finish zipping it! She entirely dressed herself! Praise the Lord! (I had tears in my eyes as I hugged her and had her run right down-stairs and tell Daddy how she ‘dressed herself’ and he hugged and hugged her too.) She put her shoes on this morning all by herself too!”
One warm summer day, we were cutting and splitting some of our winter firewood. Sarah was about 4 ½ years old, Rebecca about 2. The logs had been delivered and stacked in our back yard. Allen would saw the logs into two foot lengths, then toss the lengths aside for splitting. I’d split some, then he’d stop sawing for a while and split wood. When he went back to sawing, I’d stack what pieces he’d split. We had the kids collecting the big chips to use later for kindling. We stopped for a cool drink and sat in the relative quiet, admiring how quickly the stacked wood was growing. After a little bit, we noticed that Sarah was also admiring something - on the ground.
Allen went over to see and then enthusiastically called me over. Sarah had “built a boat”, she said. And sure enough, there was a beautiful sail boat made of big wood chips. Allen ran for the camera.
Rebecca was taking a bath one night. She scraped her knee a week or so before and had acquired a rather large scab on it. When she had fallen, we prayed over the knee, asking Jesus to take the hurt away. During her bath, she noticed that the scab had fallen off. She exclaimed, “Mommy, look! My boo-boo is all gone.” I said, “Jesus took it away.” She was thoughtful for a second and said, “Do you think Jesus has a boo-boo on His knee now?”
At first I answered rather quickly, saying that no, Jesus didn’t have a boo-boo on His knee. But after I thought about it, I had to retract it because Jesus did bear all our hurts on the cross. He probably did have a boo-boo on His knee.
“No temptation has seized you except what is common to man. And God is faithful; He will not let you be tempted beyond what you can bear. But when you are tempted, He will also provide a way out so that you can stand up under it.” I Corinthians 10:13
Over the summer of 1979, Allen took a course in Drug Enforcement at the Police Academy in Albany. While he was there, he spoke with one of the guest lecturers - a pharmacist. Sarah continued to have seizure problems and the neurologist at the C.P. Center had continued to increase her phenobarbital and dilantin levels. She was developing several side effects from the drugs. Her entire body (even her shoulders) was covered with soft, downy hair; a side effect of dilantin. Her speech was so slurred that she was extremely difficult to understand. She was so uncoordinated that she could barely walk down a hallway without bumping off the walls. Allen had been impressed by the pharmacist who had spoken to their class. He told the man about Sarah.
The pharmacist listened sympathetically, then told Allen about depekane. It worked well in some children in replacing phenobarbital in controlling seizures. Then he related a personal experience he had had with it. He’d known a boy who had been totally uncontrollable (socially speaking) on phenobarbital. It made him hyper - like a wild animal. They hated seeing him come into the store. Then one day, he came in alone and handed the pharmacist a note. He quietly explained that his mommy was outside in the car and he’d wait for the medicine she wanted. He was like a new kid on depekane.
That was all we needed to hear. Armed with this new information we went back to the Cerebral Palsy Center, spoke to our neurologist and asked him to switch Sarah to depekane. He was a little reluctant, but finally agreed. So, before school started we made the switch.
“I am the vine; you are the branches. If a man remains in me and I in Him, He will bear much fruit; apart from Me you can do nothing.” John 15:15
At first I couldn’t figure out what was happening. It seemed that I met stone walls wherever I went.
Our home was a disaster. It was a mess - dirty laundry, dirty dishes, dust. It was a shambles, and there never seemed to be enough time.
I was teaching Sunday School; writing, typing and compiling the church Newsletter (between 8 and 16 mimeographed pages each month). I was a member of the church board of education and board of evangelism. Work at church seemed to go easily and gave me a sense of satisfaction. They needed me. I won praise and appreciation there. Other women understood what I was going through. They too, found that they had to choose between serving their husbands and “serving the Lord”.
At home, I heard criticism and disappointment. Allen didn’t understand my need to “serve the Lord”. He grew farther and farther away from the church. I felt that I was straddling a chasm. My husband pulled me one way, the church another. The church wanted us to do more. I couldn’t figure out where we were headed. I wondered if we were even close anymore. I “knew” that Allen didn’t understand me anymore. We struggled for about a year. Then the Lord opened my eyes.
The Lutheran minister called me into his office to discuss “our” problem. It was clear from the outset that “we” didn’t have a problem. It was clear that he thought that the problem was mine. It wasn’t much of a discussion. I left in tears. As I left he said something like, “Keep in touch.” I stormed out of the church.
The next few days were really tough. Finally, I sought the counsel of my friend, Vickie. I knew I could trust her. I knew she loves me. But more importantly than that, I knew she loves the Lord and I wanted to know what she thought He would want me to do. She told me to quit my jobs and submit to the authority of my husband. “But, if I do that”, I exclaimed into the phone,”the church will fall apart. I’m doing too many jobs!” She sounded like she was smiling, “Now, Barb., whose church is that - yours or His?” Oh, she made it sound so simple. If you knew what a women’s libber I had been in college, you would have been surprised to know how comforting her words were to me. I began to realize that the Lord gave me this special family for a reason and that my ministry might lie somewhere outside the church walls. Shortly after my “talk” with the minister and my counseling with Vickie, I met some Pentecostal friends of a family in our Lutheran Church. They had been meeting regularly on Saturday nights, in a big farm house not far from town for Pentecostal prayer meetings. These people had a handle on scripture that I had not seen before. They shared with us verses on the headship of the house, on submission and Christian discipline and love.
I learned that I had not been serving the Lord with all my jobs in the Lutheran Church. He had given me a special family with special needs. Those needs had been abandoned as I had boarded ship (the church) like Jonah and had sailed out into the sea. Now the sea was choppy. Verses like 1 Timothy 2:14, 1 Peter 3:1, and Ephesians 5:22 were like bolts of lightning lighting up the sky during the storm and revealing the crashing waves and turmoil around us. 1 Timothy 2:14 says, “Adam was not deceived; it was the woman who was deceived...” Allen had never felt the social pressure to work in the church. He had been a Christian for much longer than I and yet didn’t feel that he had to do “works” in the church in order to work for the Lord. He also remained honest with himself and the Lord. He never said “yes” when he wanted to say “no”. He had not sought the praise of men. I had. 1 Peter 3:1 says, “Wives, in the same way be submissive to your husbands so that, if any of them do not believe the word, they may be won over without talk by the behavior of their wives, when they see the purity and reverence of your lives.” My life had hardly been filled with purity or reverence. When I read that verse, I shuddered to think of all the times I had nagged and whined at him to try to get him to do something at church. Like Jonah, I felt that the whole ship would sink unless I went overboard, so I held my breath and leaped. I resigned all of my church jobs and rededicated my life to serving the Lord through the family He’d given us.
Without the church to run away to, I found that home was a sobering experience. All the dirt and disarray, which I had been oblivious to before, was mind boggling. No wonder Allen had been so upset with me! It made me think of a train station. If you rush through it every day, you don’t notice how messy it is because you are thinking about where you are going and what you will do when you get there. But if you have to wait for a train for long hours or wait for someone coming in on a train, you have a chance to see what’s going on around you. For too long, my house had just been a stop-over in my life, a place I spent time in when I was waiting to go somewhere else. Now that it was to be a major part of my ministry, I saw it in a whole new light and uncovered a mountain of neglect.
My decision to quit my church jobs, put our worship life into a bit of a mess too. For awhile we felt like we were in the belly of the fish. Many of our church friends stopped talking to us once I dropped all my “responsibilities”. For several weeks the sermons were pointedly political about things like “love” and “commitment” and about how we should “suffer for the Lord”. Because we had joined the Pentecostal prayer group on Saturday evenings, there were rumors that “tongues” had caused all of our “problems”. We loved our prayer group. We found a love of the Word there that we had never known before. The prayer was so spontaneous and enthusiastic and we saw prayers answered so regularly that we wondered how we had lived for so long without discovering this before. It was wonderful.
Still, we knew that pentecostalism wasn’t the whole answer either. Although they were careful about how they said it, and were always loving and accepting and encouraging to Sarah; we knew that they did not believe that Sarah’s C.P. could be part of the Lord’s will for us. One beautiful sister would say, “My God doesn’t cause illness, He heals it.” When Allen said that he didn’t feel that it was God’s will that Sarah be completely healed right now, a sister said, “Then, maybe that’s why she hasn’t been healed.” We had talked with other Pentecostal friends whose doctrine seemed the same - (1) God doesn’t inflict illness or injury on people. (2) ALL people will be healed. (3) Failure to “receive” the healing that God “intended” was caused by either a lack of faith or some hidden sin. Allen and I saw Sarah as a phenomenal gift from God, who is such an example of how generously the Lord answers prayer, that we could not accept these three premises. Sarah gave us such chances to witness to people...she has such a love for the Lord herself and a faith that can move mountains. We knew that we would not feel comfortable in a Pentecostal church. Still, we were no longer welcome in our Lutheran Church.
About this time, the Lord opened a door. Sarah had a bad seizure. I called our prayer group and started them praying. Finally, the doctor was able to get the seizure under control and began to make plans to have Sarah admitted to the hospital. I became quite ill. My stomach was so upset that I had to leave the hospital. I went home and dumped Rebecca on the living room floor and crawled onto the couch. As I lay there, I heard a car door slam out front and heard steps on the front porch. When I opened the door, I started to cry. There stood a gal from our prayer group. She announced that she would be taking care of me and Rebecca for the day. She sent me to bed and began to pick up the house and play with Rebecca. As I crawled into bed, I knew that we had never known love like this before.
About this time, a minister from Full Gospel Businessmen arrived at the hospital to pray with Allen for Sarah. Allen had joined Full Gospel Businessmen only a couple of months before but this minister remembered him because Allen had stood up in the Lutheran church one Sunday and had “given them what for”, as he put it. After this minister prayed for Sarah, he turned around and noticed a baby in a crib behind them. Allen didn’t know what the baby was in for, but they both decided it would be good to lay hands on it and pray for its healing too. When the minister asked Allen if there was anything more he could do for him, Allen asked him if he would mind going over to our house and praying for me.
The next thing I knew, there was a knock on the door, some talk downstairs and my friend came upstairs and announced, “Reverend Gordon Wendell is downstairs. He said that Allen asked him to come here and pray for you.” I moaned and said, “Send him away.” She went back downstairs; there was more talk, then she came back up and said, “Gordon says that he told your husband that he’d pray for you and he’s not going to leave here until he does. Now, you can go downstairs and see him or he’ll come up here.” I couldn’t believe my ears, but I went downstairs and got my prayer. That evening, Sarah and the baby in the next crib were both released from the hospital early. I was much better too.
When we were all completely recovered, we decided to visit the little Presbyterian Church where Gordon preaches. It was love at first visit. We were impressed that there was a witness time in the middle of the service and people stood up and proclaimed their love of the Lord enthusiastically. They spoke of answered prayers and asked for prayers. It was like landing on the beach and hearing the surf breaking on the sand. “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28
As a footnote to this chapter, we received a note from the pastor of the Lutheran church within a couple of months requesting that we not return to worship there. The Lord had known that nothing short of a catastrophe would have torn me away from that church. It was a painful experience for everyone involved.
We had been like potted plants, in a pot that was too small. Our roots had grown right into the cracks and crannies of the pot. As the roots had been forcibly drawn out of the pot, it had hurt. Once pulled loose and planted in new soil, the plant began to grow and blossom again. In our new church home, we began to find support for the kind of Christian home that we wanted to build. We also found friends who would be willing to help us face our sin and deal with it in a forceful, loving and scriptural way. As our family began to get back on its feet, Allen got more and more involved in the life at the church. I got back into teaching Sunday school and we could really share our love of working for the Lord for the first time. At Allen’s job, the Lord began to open chances to witness and share. It was amazing to watch. I had feared when I quit all my jobs that I would be sidelined from the action. Instead, we had found the action and it was exciting. Praise the Lord.
I have heard many similar stories from different people who have had similar experiences since we had this little episode in our lives. Sometimes people say, “It’s things like that which keep me from going to church. I once met a minister or a congregation who....” Then they’ll tell me some horror story of how the Lord’s love or Word had been twisted or abused. It saddens me to hear of people stopping their search for His true love because of some misguided people. No matter what business we are involved in, if we deal with people in any way, we are bound to be disappointed by someone. That is the nature of man “For all have sinned and fall short of the glory of God.” (Romans 3:23) When we buy a car and have warranty trouble, do we stop using cars from then on? No, we change models, or look for a reputable dealer. When we are cheated by a produce dealer, do we stop eating? No, we look for an honest produce dealer to get our food. When we come up against a disreputable doctor, dentist, lawyer, or insurance salesman do we throw up our hands and say “I’ll never see a doctor, dentist, lawyer or buy insurance again.”? No, we ask around and find someone we can trust to handle these sensitive areas of our lives. The spiritual side of our lives is just as important (more so) as the materialistic side. Yet we deceive ourselves into thinking that we don’t have to look for healthy places for it to grow.
Whenever people do something, there will be people involved in it who aren’t reliable. The mistake we make occurs if we let the unreliable people kill our desire to draw closer to God’s plan for us. That’s where true joy can be found.
“My grace is sufficient for you, for My power is made perfect in weakness.”
II Corinthians 12:8
Depekane didn’t prove to be the solution to Sarah’s problems either. She started having seizures again. Her neurologist put her back on dilantin with the depekane.
In mid-February, Sarah had another long seizure. Since all of her seizures had occurred in the morning, her neurologist decided we should give her a dose of medicine during the night (hopefully, to prevent a low morning medication level). I’d give her medicine at 8:30 a.m. (before school),3:30 p.m. (after school) and a third dose at 11:30 p.m. One night, I woke her up to give her the medicine and she glared at me and slurred, “You get out of here.” It took me nearly 10 minutes to convince what was usually a cooperative child that she had to take her medicine. I went to bed in tears that night.
Since depekane can cause liver damage, periodic blood tests were necessary to determine if changes in her blood chemistry were occurring that would indicate the liver damage. So, once a month I’d have her pediatrician draw blood for the sample. By March Sarah could not sit in a chair without falling out. She was unable to walk down a hallway without bumping off of the walls. Her appetite was so small that a single slice of cheese would satisfy her for lunch. On one of our trips to the pediatrician, Sarah tried desperately to sit up on the examining table but she was glassy-eyed. Her speech was so slurred that he could barely make out what she was trying to say to him. I asked him, “What kind of a life is that for her?”
He looked at her sadly and said, “No kind of life. Unfortunately, you have the best children’s neurologist in this area looking at her.”
It didn’t sound like that was all there was to it, so I asked him, “O.K. If she were your child, what would YOU do?”
“If it were my child, I’d try to see Dr. Cesare T. Lombroso, of Children’s Hospital Medical Center in Boston. He’s the Dean of Neurology for Harvard Medical School and wrote the textbook that we use when we take care of children like Sarah. I’ll give you his address and you can write to him, but remember that he’s a very busy man and only takes the most interesting cases.” He got me the address and told me briefly how I should write the letter - “Keep it short” and telling me that if Dr. Lombroso was interested, he’d ask to see her medical history.
On April 3, 1980, I wrote a brief note to Dr. Lombroso; telling him that we had a daughter with cerebral palsy and epilepsy and that our pediatrician had recommended that we contact him for a second opinion regarding her medications, because her seizure disorder didn’t appear to be under control. Allen and I figured that the worst that could happen would be that he could say no.
Within a week, his office was contacting us, requesting Sarah’s file.
We received a call from Dr. Lombroso’s secretary, stating that they thought Sarah could be seen as an out-patient sometime in June. We felt that our prayers were being answered.
On May 5, we woke to the dreaded sound of Sarah’s convulsing in her room. We prayed, threw on clothes, swept her and Rebecca up and piled into the car.
As we sped up the street, Allen was thinking of the verse “...and everything that does not come from faith is sin.” (Romans 14:23) I was thinking of the story Jesus told of the man asking his neighbor for bread in the middle of the night. He said, “I tell you, though he will not get up and give him the bread because he is his friend, yet because of the man’s persistence he will get up and give him as much as he needs.” (Luke 11:8) Suddenly, as we both were praying, the Holy Spirit impressed upon me to pray, “Oh, Lord Jesus, I know that you can heal her. Please do it now!”
Sarah relaxed in my arms and began to breathe normally.
By this time the nurses in the Emergency Room knew Sarah by name. As I came through the door, a nurse said, “Oh, Sarah’s had another seizure!”
I nearly yelled at her, “ Yes! And Praise the Lord -- She’s stopped!!!” They examined her, gave her a shot of phenobarbital “just in case” and sent us home. We could have floated. It was her shortest seizure to date, only about 17 minutes.
Later in the day, our pediatrician’s secretary called. The suggestion was made that since Dr. Trust was on vacation and unavailable and since we were already in contact with Boston, we should contact them and tell them about Sarah’s latest episode. I wrote to Dr. Lombroso advising them of our situation.
“The things which are impossible with men are possible with God.” Matthew 19:26
On May 12, Dr. Lombroso’s secretary called to ask if we could have Sarah admitted to Children’s Hospital Medical Center in Boston on May 20th. Dr. Lombroso would really like to take a good look at her. After I had said, “Yes” and the excitement of the thought wore off, I realized that reality was heavily stacked against us.
I had made a colossal mistake in our checking account. I had added instead of subtracted a check and we were already bouncing checks like mad. We had no savings account.
Our car was a 1972 Pinto station wagon, full of rust holes, which had a very tired engine and transmission. Plus, if the car made it, we still had no place to stay.
We asked our prayer group to pray with us and we gave the situation to the Lord. We said something like - “Oh Lord, you have provided the doctor. If it’s really Your will that we see him, You’ll have to make the connections.” Then we waited. There was nothing more we could do.
One of the families in our prayer group came to us. They had just purchased a Datsun 510 - a zippy little sedan with a standard transmission. They said that they could not have gotten the loan to get the car if the Lord hadn’t helped them, so they were using the car for Jesus’ work. They offered to trade cars with us until we got back. Good thing, because right after we left, our Pinto died. “Luckily” they also had a truck, so they weren’t stranded either.
Tuesday, May 13, a man came to the door. He said that a friend of a friend of a friend of his had told him that Al Mulvey had a gun for sale. (Several months before, Allen had had the opportunity to buy a view camera. He had wanted a view camera since his high school days. He had tried to sell one of his pistols to buy this camera. Much to Allen’s disappointment NO ONE wanted that gun. We had forgotten all about it.) As it turned out, not only did the man buy the gun, but the reloading equipment Allen had too. It would turn out that the money he gave us would be just enough for our entire trip.
So, the Lord had provided the doctor, the car and the money. All we needed was a place to stay. I called Ronald McDonald House. They only take the parents of cancer patients. I called the hotel near the hospital ( $60.00 per night, just for a room!) I was told that it was graduation weekend and nearly every college and high school in the area was having graduation ceremonies and all rooms around Boston were booked up weeks ago. We thought Saturday night that Full Gospel Businessmen International had a place for us. That fell through.
We had just started going to the little Presbyterian Church in Fair Haven, New York, where Gordon Wendell is the minister. We loved the service and were just beginning to get to know a few people. During the witness time, I stood and told how the doctor, car and money had been provided and that we were going to Boston the next day, but that we needed prayer for a place to stay.
After the service, a couple came up to us and introduced themselves. They had just come back from Florida. (We had never met before.) His cousin lived in Hamilton, Massachusetts, about an hour north of Boston. He would call his cousin and see if we could camp out on his floor until we could find a place to stay.
At 4 p.m. on May 18th, less than 24 hours before we were to be in the Boston area, we received a phone call from the husband of the niece of the man we’d met that morning. (He did not know his wife’s uncle. Her family had moved to Mass. when she was 7 years old.) They invited us to stay with them.
Now, the Lord could have given us just a room to sleep in or a piece of floor on which to throw down our sleeping bags. We were not at all prepared for what we found - a home, warm and welcoming. And the family in the home was remarkable in many ways. They accepted us into their home like we were family. They had spent many hours at Children’s. Two of their three children had been admitted to Children’s early in their childhood - one for major surgery and one to repair damage done in a serious accident. They knew the quickest route to the hospital, where to park and, best of all, they knew how to keep our spirits up. Only the Lord can meet your needs abundantly like this.
“I tell you the truth, anyone who will not receive the Kingdom of God like a little child will never enter it.” Luke 18:17
Sarah’s primary care nurse was a perky, bright young lady with a genuine love for every child in her care. Her name was Amy. Sarah loved her instantly, so did we.
Amy had a long checklist of things to ask us after Sarah was admitted.
Did she have any special likes?...dislikes? How about favorite foods, etc.? When did she go to bed - any bedtime ritual? favorite toy? Then some questions about her history. (I was glad I had written it down since the beginning.)
Then Amy asked, “What do you do when she’s frightened or hurt?”
“Sometimes she likes to talk to Jesus about her hurts or fears, so we pray with her.”, we answered. We didn’t know that what we were saying was a revolutionary idea. (We also didn’t know that Amy was Jewish.)
She looked puzzled, “And what does she think she’s doing when she’s ‘talking to Jesus’?” She asked.
“Talking to Jesus.” was all we could say.
The first morning we got to the hospital just after breakfast was served. Amy was glad to see us, Sarah had been reluctant to eat. I began to worry immediately that Sarah would not want to eat in the hospital at all and we’d have problems.
Allen went over to Sarah, who had her plate sitting in front of her, and asked her why she hadn’t dug into all that food that smelled so good.
“We didn’t thank Jesus yet Daddy!” Then we noticed that her hands were folded in front of her. For every meal that Amy sat with Sarah, she patiently prayed with her.
Why here Lord?
There have been many times when we’ve felt that Sarah’s problems have gotten us into places where we normally would not have chosen to witness. Since we anticipated that Sarah would be relatively healthy during her stay in Boston, we looked for ways to witness while we were there. During many days there, Sarah was going off one set of drugs and onto a new set of drugs. Since they didn’t dare allow her to go off the first set entirely before starting the second, there were several days when she was so doped up or so sick from literally being overdosed that the hours got real long. We spent a long time talking with other parents, whose children were in varying degrees of diagnosis.
One day a couple with two small children came in. The daughter was about two years old, the son about 10 months old. They had flown in from a southern state to Boston because their concern was for their son’s development. It was delayed, as far as meeting critical “landmarks” in physical development. The wife told me, “Something isn’t right.”
As we talked, we learned that their doctor suspected cerebral palsy and had written the term on the written report that he’d given them to carry to Boston. Apparently he had never suspected that they’d open and read the report, because he had never told them of his suspicions and they had little idea of what C.P. is. They were understandably frightened at the possibility. (I remembered how sick I had felt when I’d first heard those words.) They were hoping against hope that it was all a big mistake, knowing in their hearts that it probably wasn’t. We were glad we could help them see that there was life after finding out your child has C.P. and we prayed that it was all unnecessary.
After a couple of days, the tests and waiting were over for them. The doctors gathered in the parents lounge with their combined conclusions. When the parents returned to get their son dressed and gathered up his toys, the grief on their faces told the story. They tried not to cry so that their daughter would not worry. (The wife’s sister had been acting as baby sitter for the daughter during all the testing and now hustled her off to go get a treat while mommy and daddy talked.)
For a moment, we could share with them. We knew how they felt. “Lord,” I prayed,”help me to say something comforting, something helpful. Help me to use my gift of encouragement.”
I looked into their sad eyes and began to talk quietly, “Well, now you know for sure what you are dealing with. You can start to help him. You were right to come here when he is so young. He can start getting the therapy he needs now before he adapts himself and learns some bad habits to compensate.”
In my mind, I thought “Oh Lord, that all sounds so hollow. Please Lord, give me something more than what the doctors have said.”
Then I thought and said, “Actually, what has changed? In reality, your boy is the same kid he was yesterday, right?” (Did I see a small smile?) “The only thing that has changed is his label. That doesn’t change him and it doesn’t change how much you love him, does it?”
The boy’s father looked at him, with tears in his eyes he whispered, “Just the opposite. I think we love him more now.”
In a little while they were gone. I said to myself, “Boy, I wish I could see them a year from now. I bet they are a whole new family, happier and sharing a special love.”
Would you believe, a year later we were walking down the sidewalk outside Children’s on our way to one of our semi-annual check ups when we nearly bumped into the aunt of that little boy (the wife’s sister, who had babysat the boy’s older sister). She saw us before we saw her. She nearly bubbled over as she told us how well they had all adjusted to his C.P. He was getting therapy and doing very well.
There are no loose ends with the Lord!
“Do not be afraid or discouraged... for the battle is not yours, but God’s” 2 Chronicles 20:15
Children’s is an amazing hospital. The children appear to run it. We could sign Sarah off the floor and visit a gorgeous garden or go almost anywhere as long as they knew where to find us. (You would see children walking around dragging iv bottles behind them. Our floor had a “play lady” whose 8 hour a day, 5 day a week job was to help the kids stay amused through their problems. She became a great friend.) Sarah was hospitalized over Memorial Weekend. Since all the people doing the testing were on vacation, we got to sign Sarah out and do some sight seeing on our own. We went to the Aquarium and the Stoneham Zoo. The Lord provided us with a mini-vacation.
When we’d contacted Dr. Lombroso, we had been very concerned about the epilepsy. Once we got there, the doctors were very interested in her C.P. She had test after test. In Syracuse, they did an E.E.G. when she was an infant and again when she was evaluated for services at the C.P. Center. That was all. In Boston, they did tests in perception and an E.E.G. at the same time - to see how the brain was working during the testing.
The first thing we learned was that her medications had been “totally inappropriate” and had to be changed. Then we found out that in Sarah’s case the brain wasn’t working very well -- or maybe it was working remarkably well. We were told for the first time the extent of the brain damage Sarah had suffered at age 10 days. The right side of her brain was virtually gone. The optic nerve of her right eye had been damaged, so it could only see a blur. Her left eye sees as if she is looking through a paper towel tube and can only see parts of the whole picture. (Like if you took some of the pieces out of a puzzle -- there are gaps in her vision.) She is so visually handicapped that she can be declared legally blind. They were amazed that she could tell colors. (Remember the Fruit Loops?!) Actually, in those two weeks, we learned more than in the previous four years. It turned out to be a blessing that her epilepsy was uncontrollable.
One doctor told us, “This child is incredibly handicapped and it doesn’t show!”
After he had said that, and Allen and I were out in the hall, Allen looked at me and said, “Doesn’t that mean that she’s not incredibly handicapped?”
“I will bless the Lord at all times.
His name shall continually be in my mouth.
My soul shall make her boast in the Lord;
the humble shall hear thereof, and be glad.
O magnify the Lord with me,
and let us exalt His name together
I sought the Lord, and he heard me and
delivered me from all my fears.”
Jennifer and Going Home
Sarah was in a room with four beds. When we arrived, two of three children there were practically ready to go home. One had needed surgery to put in a new shunt to control his hydrocephalus, the other was a kind of experiment. His shunt had a valve in it. They’d try to turn the valve off in order to build up pressure to hopefully cause the normal drainage to occur. It sounded good in theory, that eventually the child would not need the shunt at all. But in reality, it wasn’t working very well and the child suffered from headaches a lot. Within a few days they had both gone home.
The fourth child in Sarah’s room was Jennifer. She had already been in Children’s for two weeks and had been convulsing nearly the entire time. When her limbs weren’t shaking, her eyes rolled and jerked or her mouth chewed. Still, she was a beautiful little girl with big eyes and soft brown curls. She was nearly six years old. Her parents said she came bouncing through the door of their home one afternoon, happy, fine and healthy. That evening she ran a fever that suddenly spiked up. She had a seizure the result of the high fever they thought. Then she seemed to recover. Gradually she began to have more seizures which medicine seemed unable to control. At first they were spaced far apart, but with time the seizures grew closer and closer together until now she twitched nearly constantly.
Jennifer had an older sister who had to continue in school. Her parents were wonderfully patient. They spent as much time with her as they possibly could, but they also had to go home -- some 300 miles away, to spend time with Jennifer’s sister. They didn’t seem to mind either assignment. When they were in the hospital, they took care of Jennifer -- bathed, fed and dressed her. Her mom was so gentle and patient that it looked like she savored each moment with her as if she knew it could be their last together.
We learned that many prayers had gone up in their behalf. (Jennifer’s dad said that one of the nurses in their local hospital had called her minister and some of her friends and they had laid hands on her and prayed.) Still, Allen and I felt compelled to pray too. We did, a lot, especially on days when Jennifer’s parents couldn’t be there.
I’d go over to her crib, stroke her hair and softly talk to her and pray -- for the “Peace of the Lord which passes all understanding” (Philippians 4:7). One night after we got “home”, I told Allen in frustration, “It seems whenever I pray for her, she shuts her eyes and goes to sleep.”
The next day, Allen came out into the hall, where I was reading the bulletin board, “You remember what you said last night about Jennifer falling asleep when you pray?...Well, her nurse just came in and said, ‘You know, I think she seizes less when she sleeps.’” Thank you Lord.
Sarah was scheduled to “go home” on May 30, Rebecca’s birthday. We had a meeting scheduled with Dr. Lombroso for about 2 p.m. He said as soon as the paper work was done we could leave.
We waited an hour and a half for the resident on our case to come to the floor to fill out the paper work. Sarah took a nap in Allen’s arms. I was busy telling everyone that we were going home, finally. (We had a birthday party planned for Rebecca back “home” in Hamilton, Mass.)
Sarah woke up and then, as if repeating her performance that New Year’s morning long ago, tipped over and began pumping her left arm. This time it was different, because in the beginning she saw what was happening.
She yelled, “Mommy, my hand! Make it stop!”
I tried to talk calmly to her, telling her to relax. Amy said quietly, “She is relaxed. You are the one who’s upset.” She was right. Within a few seconds, Sarah was unconscious and convulsing. At first her doctor (the resident) and Amy mapped out the seizure -- noting the times that each muscle group became involved. Soon Dr. Lombroso was on the scene. It was fascinating watching them. Then they began to administer drugs to stop the seizure. I looked at the time. She had been seizing a long time and I knew we weren’t going to go home that day. My heart fell. I went to the parent’s lounge, sat down and cried. I looked up and saw Jennifer’s dad standing in the doorway. He softly said he was sorry to hear that we couldn’t leave and then said, “The Lord must have a reason.”
I felt so foolish. Here I was crying over a dumb party, when he was praying for his daughter’s life. Lord please forgive me for my selfishness. (Later in the year, we would hear that Jennifer had died on July 24. She and her family were very special to us.)
Within a few minutes Sarah’s seizure had stopped, the doctors left and Amy was cleaning up the bed. Allen stood by Sarah. Suddenly he said, “Did she stop breathing?”
Amy checked Sarah with her stethoscope, then began mouth to mouth resuscitation. I ran to the desk and told the receptionist. Within seconds, a team of respiratory therapists raced past me, closely followed by the resident and Dr. Lombroso.
Panic seized me. I ran for the phone and called our prayer group leader. She prayed with me and told me the group would soon be involved. I felt calmer and allowed the Lord to be in charge again.
Soon Sarah was breathing on her own again. They moved her into the Intensive Care part of the floor, so she could be monitored more closely that night. The doctors decided that tegretol was not enough alone to control her seizures. (We counted our blessings that we had not gotten half way home and weren’t on a four lane highway when Sarah had her seizure to find out.) Mebaral was added to her daily medications. On June 5, she was ready to be released from Children’s “again”.
Once we were safe at “home” in Hamilton, I called our family and friends and told everyone that we really were coming home tomorrow. We couldn’t wait to be home to our own beds, and doing normal every day things again.
June 6 was a hot sunny day. The car ride seemed exceptionally long and tiring because we were so anxious to be finally home. Allen could “smell the barn” as they say as soon as he crossed the state line. He did not stop again until we were in Fulton. By then, I was hot, exhausted and feeling quite queasy. I dreaded the thought of getting groceries and starting supper. Allen said that he was so hot and tired he’d settle for eating a Carvel Ice Cream Cake for dinner. (He always loves ice cream. He doesn’t need a special occasion to volunteer to eat it.)
When we came into the house, we discovered that the prayer group had been busy. They had used the key that I’d left with them to water my plants while we were gone. They had vacuumed and straightened up the place; put fresh cut wild flowers in big jars all around the house, groceries in the refrigerator and opened some windows to let in the warm sweet spring air. In the kitchen sat a Crock pot full of the most heavenly stew we’d ever shared.
Oh, Lord, where would we be without the special love of Your people?
“Shall we accept good from God and not trouble?” Job 2:10
Within a couple of weeks of our return from Boston, when she had made a full adjustment to her medications, I had a new problem with Sarah. All those things that she hadn’t tried as a two year old, she and Rebecca were discovering together. No longer was she content to sit in a heap in the corner. She was free... to do all sorts of “creative” things.
I should have gotten suspicious that things would be different the day they built a pond in Sarah’s bed. Thank the Lord for plastic sheets -- they saved the mattress.
One day they were playing so nicely upstairs, that I should have known something was up. Rebecca came downstairs beaming, “Look Mommy, I washed my hair!” She had washed her hair alright, and her clothes and her entire body -- with Oil of Olay! Sarah was equally slimy and equally pleased with herself. It was all I could do to get them into the tub without having them slide through my fingers! As I scrubbed I wondered, “Lord, are you speaking to my vanity?” Whether He was or not, I got rid of the bottle of lotion, what there was left of it.
When our prayer group got together that weekend, I had to praise the Lord for making Sarah more “normal” and I asked Him to help me cope with my “new child”. I felt like I was in a crash course. I had certainly been caught unaware. One of my sisters in Christ who has five children fairly close in age got a chuckle out of my prayer. I wasn’t really complaining. The Lord knew I was smiling.
“Trust in the Lord with all your heart and lean not unto your own understanding. Acknowledge Him in all your ways and He shall direct your paths.” Proverbs 3:5,6
It began in December 1981. Sarah had been doing well in school, we’d thought. She had been mainstreamed into kindergarten and would go to kindergarten for half of the day and be in the pre-k physically handicapped class half a day. As Dr. Trust said, when I’d told him, “She fooled them all.” (Meaning, she had come a long way beyond the highest expectations of the doctors who’d treated her as an infant.)
Just before Christmas vacation, Sarah’s pre-k class teacher (the same gal we’d been with since the beginning of the program) called us to school for an Individual Education Program (I.E.P.) conference. She had been trying to meet with us for several months, but “something” had always come up and we’d never made it. I expected that she would tell us that Sarah was having some trouble with reading. I’d noticed that Sarah really hated doing her reading homework. It took all my efforts of persuasion to get her to do one page of work. Plus, I noticed that she was repeating some of the work. I had no idea how serious it had become.
The conversation went something like this:
Teacher: “I don’t know what to do with Sarah in reading. I have started her over in the Distar reading program three times. She just cannot grasp blending sounds. There’s nothing more to do but wait and see if she’ll be more ready at some time in the future.” She was really discouraged. This was admitting a big defeat for her, because a few months earlier she had been trying to encourage me by telling me that she pictured Sarah a year from now reading her own books. To my knowledge, she had never “failed” with a child before. I could tell she was hurting.
Then Allen remembered a conversation we’d had that spring with a speech and language pathologist at Children’s Hospital. She had told us that she doubted that Sarah would do well with the Distar program, because of her learning disabilities. She recommended a new program for the learning disabled, called The Stevenson Method. Of course, at the time, we thought that Sarah had been doing well in Distar reading, so we “shelved” that information.
Allen: “Have you ever heard of the Stevenson Method of reading? It was recommended to us in Boston.”
Teacher: “No, but I don’t see how it could be more basic than the Distar method. She’ll still have to learn how to blend sounds and she doesn’t appear to be ready for that yet.”
Allen: “Would you mind if we get information about the program to see what it’s like?”
Teacher: “No, but again, I want to caution you. Don’t get your hopes up too high.”
The next day, I called the Stevenson people. I told them about Sarah: who at age ten days had suffered a stroke, and had cerebral palsy, epilepsy and was legally blind as a result. Her teacher had tried Distar and had never heard of the Stevenson Program. Could they send us some information that we could share with her teacher so we could see if she thought it would work for Sarah?
The response was amazing: “What about this? We’ll send you all of the books she’ll need through sixth grade and you can borrow them for three months -- free of charge. If, at the end of three months, you decide not to use them, mail them back and we won’t bill you. If, on the other hand, you decide to keep all or part of them, we will bill you then.” We agreed.
That next week, Allen and I got the flu. It was a miserable Christmas week. We were so sick. My spirits were so low, I felt like crying all the time. My mind kept battling away with itself. What if Sarah never learned how to read? What if this is the plateau of her learning abilities? How could she become independent? What if the part of her brain that was damaged is necessary for reading? It was like the fear was feeding my illness and the illness was feeding my fear. I wanted to sleep all the time, but I couldn’t. I woke up dreaming about Sarah, wondering if this time we could find the help she needed. Finally I got so low I had to call out to the Lord for His strength. “Lord forgive me for carrying this so long myself. It’s a burden I cannot carry. It’s literally making me sick. Please Lord, give me some hope. My fears are gaining ground on my hopes. Please Lord, just bind and lift the fear and replace it with Your hope.”
I felt better, and slept some. The next day, though, I had to keep reminding myself that I’d handed that worry over to the Lord and to keep deliberately not thinking about it. Then, in mid-afternoon, the mailman knocked on the door, with the box of Stevenson books under his arm.
I opened the box, pulled out a large hard-covered book entitled The Natural Way to Reading (A How-to method for Parents of Slow Learners, Dyslexic and Learning Disabled Children). This program, “respects the premise that learning to read is a neurological process, a process awesomely complex....The material was designed to teach reading skills that complement rather than inadvertently negate the neurological development of the student....It has worked for dyslexic children, for illiterate adults, and for people acquiring English as a second language.” The main features are: (1) A daily lesson plan for teacher, parent, or tutor to use for teaching reading. (2) Long vowels used exclusively to build a five-hundred-word reading vocabulary before other phonic integrals are introduced. (3) Difficult concepts, such as multi syllable words and suffixes, not introduced until the student feels competent in the first steps of decoding. (4) No pictures (preventing guesswork). (5) Focusing on the first vowel instead of the first letter when meeting new words. (Involves the use of the Seven Special Steps, integral to the entire program.) (6) Emphasis on making a conscious effort rather than relying on automatic recall when mastering the technique of blending. (7) Explanations of student reactions at various stages during lesson periods.” The book goes on to answer several parental questions. Example: “Why does my child memorize accurately only to forget the material the next day?”, “Why does my child mouth the words?” There were several pages of questions and answers. It seemed as if they had encountered every situation. I felt as if they had been watching Sarah and I struggle. One question in particular spoke to my heart: “Will word recognition ever become automatic for My child?” The answer: “After you see the painful struggle these youngsters go through to analyze words, you will question whether the words can ever be anchored automatically. The struggle is part of the neurological development of the child. Just remember that you were not impatient when you let your child go through the struggle of learning to crawl. Eventually he was scampering all over the place. You will see a similar process take place while the child works through the process of decoding words, culminating in automatic recall; that is, if you do not get irritated while he works through the lessons.”
The more I read, the more my hope returned and the more I knew that this was a tool from the Lord to be used with Sarah. I started teaching her over Christmas vacation, 15 minutes per day. Immediately, she loved it. It became our special time together.
When she went back to school after Christmas vacation, everyone remarked at how her vocabulary had suddenly grown. Her conversation had become longer and more organized. She seemed to have more confidence. (Had the Stevenson method helped to strengthen her brain pathways as advertized? Only the Lord knows for sure -- but that’s the only thing we did different that vacation.)
Within five weeks Sarah blended her first two sounds. After about three months, we invited Sarah’s teacher and her husband to dinner. Sarah’s teacher had wanted to see how we do a lesson, so I said, “Well, we do one every night after dinner, so why don’t you join us?”
After dinner, Sarah, her teacher and I sat down at the dining room table. Sarah had run and gotten her reading book. Then she read the sentence: “Jean could hear the seal leap in the rain.” and all I read was the words “the” and “in” because Sarah hadn’t learned them yet. When I looked at her teacher, she had a big smile on her face and tears in her eyes. She was ready to start teaching the Stevenson method to Sarah in school. We began to coordinate our efforts.
“The oil of joy....” Isaiah 61:3
My Dad loves to tell the following story.
He and Allen were talking. Sarah ran up to them and yelled, “Grandpa.”
My Dad said, “Sarah, I’m talking with your father. Just a minute.”
Sarah barely waited for Dad to finish and said, “Grandpa!”
My Dad again explained, “Sarah, your Dad and I are talking. I’ll talk to you in a minute.”
Sarah, very impatient, “Grandpa!!”
Dad stopped again and in a stern voice said, “Sarah, I asked you to be patient and to wait. We’ll be done in a minute.”
After a few more words, Allen and Dad stopped talking. Dad turned to Sarah, “O.K., Sarah. What did you want to say to me?”
Sarah (cheerfully),”I just wanted to tell you I’m not talking to you right now.”
And off she ran, leaving Dad holding his sides with laughter.
I had baked cookies one day. The first batch I overcooked. To compensate, the second batch was taken out a little undercooked.
Rebecca (inspecting a chocolate chip and raisin cookie),”Mom, what’s wrong with this one?”
Me, “What do you mean? What is wrong with it?”
Rebecca, “This one is green.” (Must have been the lighting. Pale, maybe, but not green.)
Then she flipped it over and inspected the bottom (where it had sunk into the cooling rack).
Rebecca,”Oh, I know now. It got grass stains on it when it was run over by the tractor! (She pointed at the dents.) See the tire marks!”
Lord, how many times do I look at cookie cooling rack dents and see tractor tire marks? I must give You a chuckle every now and again, huh?
“Every good and perfect gift is from above....” James 1:17
It seemed like we were battling everyone. Sarah’s bus was regularly arriving 30 to 45 minutes late to school. Fulton had retired a wheelchair bus because it was too old and because there were only three wheelchair students. Unfortunately, the summer before Sarah was to start school in Oswego, another child had surgery and was now confined to a wheelchair. Instead of purchasing a new bus, one bus was making two runs. Sarah was on the second run. (She has to ride a bus with an aid on it in case she has a seizure.) Sarah’s teacher was complaining to us. We were complaining to the school district. The Superintendent of Schools told us that Sarah’s school should be more flexible in their scheduling to accommodate her lateness. The man in charge of transportation failed to see that we had a problem. He said the school was perfectly happy with things the way they were. We spoke with a lawyer.
We were meeting regularly with a social worker from the Light House (for the blind and visually impaired of Central New York). He was helping us plan strategy to get the visual therapy and visual aids Sarah needed. It seemed we had meetings with someone every day of the week, and in the times in between we were on the phone setting up more meetings.
Allen went down to the Department of Motor Vehicles and discovered that we do not qualify for handicapped license plates on our car. If the person who registers the car is handicapped you are entitled to the plates. If not, you get a little piece of paper, a permit to park in handicapped spaces in New York - for the handicapped individual to carry around with them. Our problem is that Boston does not recognize the paper, because Massachusetts uses license plates exclusively. There is an advocacy group for the handicapped in Albany. I called their number. The man I spoke with said that he himself was handicapped, but he did not understand my problem. He felt that the permit was better because it went wherever the handicapped person went. He more or less said that it was too bad that we had to go to Boston, but that wasn’t his problem. I prayed for a break in our frustrations.
During this time, my aunt and uncle came for a visit one afternoon. When they went to leave, my aunt gave me an envelope with a “small” gift in it. When I opened it, I nearly collapsed. It was $100.
We spent about $45.00 very easily. The rest was for “something special”. Then I saw an ad on t.v. for “Peter Pan” (the Broadway touring company). “Peter Pan” had always been one of my favorite stories. (I had even played John, Wendy’s brother, in the State University College at Oswego’s version and flew just like in the professional shows.) I thought it would be wonderful to see it again. Allen agreed. We’d use my aunt’s money.
I called the box office. I told the man that my daughter was legally blind, could we get front row seats? (I didn’t realize it was a week from performance.) He said that I should have called two months earlier.
Then he said, “Let me look in my desk.” He found 4 tickets (two in row E, two in row F; the 5th and 6th rows). I said that was terrific, what was the price? “$17.50 each.” As I added that up in my head quickly, I nearly dropped the phone. That was $70.00! That was $20.00 more than we had!
As I hesitated and asked Allen if he thought we could afford $20.00 more for one night out, the man interrupted, “What if I invite the little blind girl to be my guest?”
I could barely believe my ears. Did he really want to do that? Yes, he did! With him picking up the cost of her ticket, we could afford to go. The next week, Allen got an overtime check he hadn’t expected. We decided to make it an evening and go out to dinner too. It was the kids’ first time in a big restaurant.
The service was slow, so we didn’t have time for desert. We promised the kids that if they could stay awake, we’d stop for ice cream on the way home.
The show was wonderful. It lasted until 12:30 a.m. The kids were weary, but loved it. We had to carry them back to the car. By the time we were out of the parking garage, they were asleep.
Once home, we tiptoed upstairs, undressed them and carefully tucked them in. As soon as their sleepy heads touched the pillows, their eyes popped wide open and they sat up:
“O.K. Mom, where’s the ice cream and hot fudge sauce?”
“As He went along, He saw a man blind from birth. His disciples asked Him,’Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents have sinned,’ said Jesus, ‘But this happened so that the work of God might be displayed in his life.’” John 9:1-3
There were many divisions within our extended family. Allen’s favorite sister (the one who “glued” his large family together) had died a year earlier of cancer. His older sister was very bitter and resentful about how she felt her family had let her down. (The sister who had died was not just a sister, but her best friend. They were very close and she was hurting dearly.)
I sat down one evening to read and picked up Corrie ten Boom’s book Amazing Love. In it, she relates how her suffering shows people Jesus’ love. At one point she said she told one lady (who felt “justified” in her hate) that she (Corrie) had more “reason” to hate than most people. But that Jesus had helped her change that hate to His kind of love.
As I read, I started to think of Allen’s older sister. I actually began to wish I had reason to hate, so I could show her (the way Corrie had shown this lady) that Jesus can take that hate away.
It was then that Jesus opened my eyes to the hate in my own heart. Allen’s sister hated people she had trusted to carry her through their sister’s death. She felt they had let her down.
With me, it had happened nearly 7 years before, when Sarah was born. It had to do with the hospital where we had had our beautiful pink “healthy” baby girl. We had so many hopes, dreams and plans for her. We had trusted them to take care of us. We had trusted them when they had said not to worry. And she nearly died. She was such an extraordinary child now, that I sometimes wondered what she would have been like if she hadn’t suffered (didn’t still suffer) like she did.
On an intellectual level I could say that the Lord had truly blessed us -- look at all the miracles -- look how beautiful she is. But intellectually, I also knew that several lawyers had asked us “Why didn’t you sue?” Several had offered their services, saying it was a good case.
Also at this time, Allen’s job made a dramatic turn in a direction that put a great deal of strain on our whole family. He was passed over for a promotion and put on permanent 4 p.m. to midnight shift. That meant that Sarah rarely saw him. She didn’t get home until 4 p.m. He didn’t get enough sleep if he woke up before she left for school. We were never quite a family. Plus, we were cut off from our friends. (How can you have anyone over for dinner?)
I began to feel resentful. I confessed my anger, my anger grew. I began to wonder. If we had sued the hospital, we’d have money. Allen could search for another job and not be tied down by Sarah’s insurance needs. I’d think I had a handle on it, then I’d find it welling up inside me. Had we neglected our daughter by not suing those people?
That Sunday, in church, the Spirit of the Lord spoke through our minister to me. The minister related how he had been hurt many many years ago and how he’d discovered that it had hampered his ministry recently. The Spirit said, “Confess your hurt and your hate, Barb.”
After church, during a personal ministry time, I sat before about eight people and broke. I told them of my experience at recognizing the hate and began to sob. It still hurt A LOT. Some of our beautiful sisters and brothers in Christ were softly crying with me. Their love is so genuine and so special.
The minister’s wife, Claudia, said she felt that I was grieving for the child that died -- that healthy, problem-free Sarah I had expected to have. She said that I was not only angry with the hospital, but with the Lord too. I had not yet accepted His plan.
I could see His plan. There were too many “coincidences” along the way. His hand and grace were everywhere. Why was I so disappointed?
Claudia suggested that I may be carrying unnecessary guilt; that I should see where it came from and get rid of it. She also suggested that I ask the Lord to show me why He’d given Sarah to us. To plead with Him to open my eyes to why I need her for my growth.
Later that evening, I prayed as I did the dishes. (That’s my favorite place to talk with the Lord.) I began to realize that by suing, we would not have been in His will. Neither of us felt led to do that. In that case, suing would have been taking matters into our own hands and would have been a lack of faith. Rationally, I knew we had been right in our decision, but I still felt guilty. How could I overcome that?
Then I found the verse, “Therefore, there is now no condemnation for those who are in Christ Jesus,...” (Romans 8:1) I knew that was my answer and I claimed it in Jesus name. Satan and his guilt fled. I memorized it and whenever I start to feel inadequate for the job He’s given us, I claim it again.
But that’s not the end. A couple of days later, I heard of an incident that happened in school. The teacher in the room next to Sarah’s class had been out of school because her mom had died. Sarah didn’t know that. This gal came back to school feeling low and unloved. Sarah ran to her when she saw her and said, “I missed you Miss Gale!”, gave her a big spontaneous hug and kiss and then added, “I love you.” When the Spirit moves her to love someone, Sarah doesn’t question. She just does it. She has a very special relationship with the Lord. And I thank Him for letting me see it.
“For it has been granted to you on behalf of Christ, not only to believe on Him, but also to suffer for Him.” Philippians 1:29
In September 1982, Sarah returned to her classes with the physically handicapped children in the Leighton School in Oswego. There were a number of problems. Her bus was routinely late for school. She should have been getting special visual therapy and mobility training but wasn’t, due to our lack of understanding. (That was one of the benefits we should have gotten when she was declared legally blind. But you don’t get anything you don’t ask for and we didn’t know that we could request it.)
When we found out that we could get a visual therapist for her, we began to take steps to get it. We wanted to see the Committee on the Handicapped, the final step in authorization. When I first contacted them, they were booked up until December 7, but after some pleading and discussion we were given some time on November 9.
Normally it had been our experience that the COH meetings were enjoyable experiences. They were usually pretty informal with everyone participating and interested in Sarah’s progress (which had been considerable). Normally, conversation flowed freely and easily.
This COH was different. It was very formal and businesslike, compared with our other experiences. Usually, the parent member “chatted” with us about Sarah’s needs. This time she didn’t even look at us. Most of the time she studied the table in front of her. Since Sarah’s teacher had gone with us, we figured it was because they were trying to impress her with their seriousness.
After we got the recommendation for the visual therapy, I hesitantly mentioned the bussing difficulty. Together with the BOCES representative, we worked out a tentative solution that would get Sarah to school on time.
After the bus was settled, the school psychologist mentioned that it had been in 1979 when Sarah’s last psychological testing was done. He said that a lot had changed since then and recommended that she be tested again. Out in the hall afterward, he spoke with Sarah’s teacher about what kind of test and how and when he’d administer it. On the way home after the meeting, we remarked at the coolness of the atmosphere at the meeting. Sarah’s teacher said she thought it had gone well. She had been to worse.
Later that week, we had an I.E.P. (Individual Education Program) conference with Sarah’s teacher. She had heard a rumor that the COH might be considering Sarah’s psychological test results as a basis for her placement for next year.
It was obvious to us that Sarah had outgrown the class she was in, but as to placement for next year, the opportunities for placement didn’t appear to be many. Mainstreaming on a larger scale was preferable to us, but that was not the total answer because Sarah wasn’t ready to go full time into a regular classroom.
We asked Sarah’s teacher what could be the worst that could happen with this test. She said that they could determine that she’s mentally retarded and should be placed in an EMR (Educable Mentally Retarded) class in Fulton. Then BOCES would have no say in her program. And, Allen noted, they wouldn’t have to bus her any more. We remained calm, tried to listen to the rest of the meeting, signed on the dotted line and left. (Sarah’s teacher seemed to be in favor of putting her in an EMR class if the right bunch of kids could be found.)
Out in the car, I told Allen that I didn’t like the sound of that. Mostly because I had substitute taught in the EMR class in the junior high school in Fulton and I felt that the expectations of these kids was too low. No matter what group of kids we picked for Sarah today, down the road it would change and we’d be stuck with the label. Allen agreed. He also remembered something that Dr. Lombroso had told us when he first met Sarah. Allen had asked him if he thought that Sarah was mentally retarded and he’d said, “Quite the opposite. She must be very bright to compensate as well as she does.” (I had forgotten that incident. Still, I worried, because I knew in a lot of ways, Sarah appeared to be retarded. I wondered if a day was coming when she would just stop developing. I realized that I had been carrying that weight around silently in my heart for a long time.)
That afternoon, Claudia (our minister’s wife) called to talk with me about music for Sunday school. I was music director for the older children and we had to sing in church that Sunday. After we talked a little while,”out of the blue” she asked me how Sarah was doing. So I told her about our fears (that the school district could be considering declaring Sarah mentally retarded so they wouldn’t have to bus her.)
Before church that Sunday, Claudia asked if we’d mind sharing our concern with the congregation. She and Gordon felt that the congregation should be allowed to intercede for us in prayer. Out in the vestibule, we agreed that Allen should speak. But once on his feet in church, Allen broke down and cried. Together we told of the rumor we’d heard and asked for prayer. Afterward, many came up to us telling us that they would pray and giving us encouragement.
The next day we went to Boston for our semi-annual checkups.
Sarah’s first checkup was with the speech and language pathologist (the same lady who told us about the Stevenson Reading Program). After testing, she told us that she had seen a great improvement in Sarah and that the testing had gone very well.
When we told her of our concern, she said that Sarah was definitely not retarded, but was learning disabled and did have some language problems that she would have to overcome. She told us that she would address the matter strongly in her report (that Sarah could appear to be retarded because of her language problems, but when tested in a non-verbal mode, showed good reasoning abilities.) If she were declared retarded, we could use her report to question the testing and request more psychological testing, preferably someone familiar with seizure disorders.
The words “definitely not” rang in my ears and my heart leaped for joy. For once, someone had said it for sure. It wasn’t wait and see.
Armed with new confidence and hopefully soon a report, we came home and waited for the school psychologist to do his tests. Sarah’s teacher had hoped to be there, so she could tell the psychologist about Sarah’s special reading program and to watch to see if responses were judged fairly. Unfortunately, he gave her less than 24 hour notice and she had out-of-school meetings the day he came.
He used totally verbal tests, because he figured with the visual handicap that would be best. (Of course, in Boston, they said that her language disabilities would make such a test very inaccurate, very low, for her. It would be like giving a Chinese child a totally English test.) Still, in one part, where he said to us she scored low, she was supposed to copy a pattern he’d made. She couldn’t do it. (We’re not surprised.) One question he asked, “How are a telephone and a radio alike?” Sarah said, “They both make noise.” He said that was inappropriate. He said they were both means of communication. (Allen has a federal license to repair all kinds of radios and radar, that’s one of his jobs at work. He knows how they work and he thinks Sarah gave the better answer.)
Now for the miraculous part.... In spite of all that, he too came to the conclusion that Sarah was not retarded. He said that at the COH meeting he had felt uncomfortable because he thought (based on the 1979 testing) that she was retarded and that her present program was too difficult for her. But after meeting her, and testing her, he now feels that the program isn’t stimulating enough for her.
The next fall, a new program would be created for children six to nine years old, who are neurologically impaired. Fulton has an NI program for older kids, but now will extend it down for Sarah and some others. It would give special tutoring to the learning disabled and mainstreaming would occur whenever and as much as possible.
The next spring, Rebecca turns 5. She could hardly wait to start school. It looked like she and Sarah will start their new schools together. How perfect His timing is.
In Sunday School that morning, the Sunday School Superintendent began the opening worship service with the hymn “Jesus Loves Me”. Then he asked, “How do we know that Jesus loves us?” (expecting to hear the kids say, “because the Bible tells me so”).
Sarah raised her hand and he called on her. She said, “We know that Jesus loves us because He heals us when we are sick, takes care of us and when we fight and stuff, He takes away our sins.”
Oh, Lord, thank you for Sarah and Rebecca and Allen. They have taught me so much about Your love. I am so grateful, Lord, that You revealed Yourself to me before you gave this precious family to me. I know, Lord, that without You, we can do nothing.
“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8:28
In 1983, both Sarah and Rebecca had wonderful teachers. Rebecca was in a kindergarten class that was challenging and fun. She was allowed and encouraged to learn at her own rate and thoroughly enjoyed her first year of school.
Sarah was in a class with a very dedicated young lady, who spent much of her time integrating what Sarah’s therapists told her into Sarah’s program. She was making progress, but still having medication problems (being “spaced out”) from time to time. In the spring of 1984, Dr Lombroso had us see a Dr. Zeigler (a psychiatrist/psychophysiologist).
After Sarah had been with him for about a half hour, we went in and sat down in Dr. Zeigler’s office. He said, “Now why are you here to see me?” We had no idea, except that Dr. Lombroso had set up the appointment.
Dr. Zeigler said, “Well, I am a psychiatrist (I cringed and knew that Allen was probably doing the same). My job is to help families deal with living with a child with epilepsy. Do you have any difficulties that you think we should talk about?” We didn’t.
Then he said, “How long has she been having absence seizures?” We were stunned. What absence seizures?
It turned out that Sarah’s brain was shutting off for minute periods of time each minute. That explained why she would say things like, “Sometimes at our house......is blue.” We could never figure out how she was constructing her sentences. Apparently what was happening was this. She’d start a sentence like, “At our house we eat in the dining room.” But part way into her thought, her brain would misfire and she’d forget what she was saying and would have to improvise. The last word she remembered was “house”. Our house was blue, so she’d finish with what she thought was her original thought.
We had a great time with Dr. Zeigler, just talking about our family. He wrote a letter to Dr. Lombroso confirming the observation that Dr. Lombroso had made (but that we could not see), that Sarah did suffer from absence seizures and her medication was changed. Dr. Lombroso took Sarah off meberal (a barbiturate) and put her on depekote (a coated form of depekane, valproic acid). Within a few weeks, Sarah became much more alert and focused. She began to do better in school.
In the fall of 1984, Sarah was given a new school and a new teacher. The teacher from the previous year left to start her family. The new teacher didn’t contact us until the evening before school started to “introduce” herself. (She was probably not hired much before then.) Sarah’s class of learning disabled children was now in a Catholic school, in the basement.
We met with the teacher. Like the teachers Sarah had had before, she was young and fresh out of college. We told her about Sarah and how we thought Sarah would benefit from her class the most. We told her that Sarah cannot see blue ditto papers. That she’s on a relatively new mixture of medications and more alert than ever before and was finding herself easily distracted by things she had not noticed before. We told her teacher about Sarah’s epilepsy that she was never to be left alone without supervision. We even met with the school nurse and the teacher together to tell them how to handle a convulsion should it occur.
In 1984, BOCES made a significant change in their policy of handling therapies for children. Instead of hiring the therapists themselves, they contracted a man to handle all of the scheduling and to provide the services that BOCES students needed. This expert decided that it was not cost effective for physical therapists to take their equipment with them into each school. He set up therapy centers in certain schools and bussed the kids to the therapies. For Sarah this meant that she would be bussed all the way across town to a different school (regardless of the weather) where her therapist did the p.t. Then a half hour later she was picked up and bussed back to her school. In the winter, she would have to stop work, get her winter clothes on and be all ready to go. On the return trip, she would have to get undressed and settle down to work. Sometimes, in rough weather, she would travel a half hour or more each way. In good weather, she would lose 15 minutes each way, so one therapy now ate up an hour of each day or more.
The biggest drawback, aside from time, was that Sarah’s therapist did not communicate on a regular basis with the teacher (like they would have if the therapist had to come get Sarah and bring her back to class). Hence, therapy was not followed through in the classroom. Several times I visited the classroom and found Sarah sitting in positions that were counter productive to her physical therapy.
In the fall of 1984, Allen was placed on an impossible shift at work. He was forced to work from 11:45 a.m. to 8:30 p.m. His boss was attempting to punish him for a letter to the editor of a local paper that I had written that was critical of our local District Attorney. We didn’t know it, but the D.A. and Allen’s boss had an “arrangement” of questionable legality, but which gave them each a certain amount of power and authority in the eyes of people they wanted to impress. Allen’s boss wanted to stay on very good terms with the D.A. and my letter appeared to him to jeopardize that working relationship.
This shift put tremendous strain on our family because Allen could not get much time in the morning with the kids because they were dashing off to school and wasn’t home before their bedtime. The result was that he didn’t see the kids except on weekends.
The effect this had on Sarah was devastating. She suffered from upset stomachs and threw up in school on a regular basis. Allen would get a call from the school that Sarah had become ill and he would have to leave work to bring her home. That fall, she missed 18 days of school and attended school for 19 days. Dr. Lombroso prescribed Valium. We also didn’t know that this young teacher was handing Sarah a pile of work to do each Monday and expecting her to have it finished by Friday. She didn’t give her blue dittos, but had someone write over the dittos with a black pen (which made the whole thing look like it was walking around the page). If Sarah didn’t get her work done by Friday, Sarah would not “earn a party” and would have her desk moved out into the hallway where she was expected to complete the work. No wonder she was so emotionally upset with school! This was going on at the same time that Allen’s shift was changed. We didn’t find out what was happening at school until May.
I kept sending our notebook to school, but didn’t get much response from the teacher. One day the teacher wrote, “We started the solar system today.” I sat here scratching my head and wondering what to reinforce. I asked Sarah what she had learned about the planets today and she looked surprised. After a little talk, she told me about a mysterious force that holds things down onto the earth and keeps things from floating away! Ah... Gravity. They were studying gravity! It was then that I realized that this lady was not very enthusiastic about my reinforcing Sarah’s learning.
In the fall of 1984, I also decided to ease up on Sarah’s reading lessons at home. I decided that the poor kid was not having any time to be a child. I heard a man on Dr. James Dobson’s show say something like, “If a child is not allowed to take it’s childhood when it’s four or five, it will take it when it is 17 or 18 and that’s not easy for both of you.” I got thinking about that and realized Sarah was continually in a structured circumstance and had not had time to be creative without supervision. She could not take the added stress. The result of this move was that by the spring of 1985, Sarah had lost most of her reading skills. I have serious doubts as to whether her teacher had followed through with her reading program at school.
During the 1984/85 school year, I decided to dust off my teaching skills and applied for a job as a substitute teacher here in Fulton. The last time I had substitute taught was in 1971 and I had hated it then. But a lot had changed since then. I had come to know the Lord and I had learned lots more about children and their savagery was not so shocking any more to me. I guess I’d been growing up. I got called a lot to sub in EMH (educable mentally handicapped) classes and LD (learning disabled) classes quite often. Again, the Lord opened my eyes and I didn’t like what I saw.
In one remedial reading class in the Junior High, I picked up their reading book and began to read. I mentioned to the teacher of the class that I thought the book was depressing. (He was studying to be a principal and substituted for the principal. When he was subbing for the principal, I subbed for him. Since he was always around, we got to communicate about the class in an unusual way. Subs don’t usually even meet the people they sub for. He was a likeable and compassionate man, so this book seemed out of place.) His response was, “We use that author a lot. She always writes about depressing characters in impossible situations and one or more of the characters die before the end of the book.” I said, “YUCK!” He looked at me and said, “Yeah, but you’d be amazed at how many of these kids identify with that.” I came home upset. Why would anyone want a child to identify with that?
The learning disabilities class was an eye opener too. In that class, students came for several hours per day to get remedial help. In theory it sounded good, but I subbed there several times and it was always the same. The students came in and tackled a pile of dittos in their folders about six inches deep. As soon as they finished one ditto, they went on to the next. I had a difficult time trying to encourage them, when I felt that they were only wasting time. To me this class looked like a holding tank, to keep these kids from being out in the mainstream where they could be distracting. When I came home from teaching in that class, I would look at Allen and say, “This is the class that Sarah is headed for. I don’t like it.”
In March of 1985, Allen signed up for a home schooling seminar at the Sacred Melody Shop (a Christian book store) in Syracuse, N.Y. He was all excited about the idea, but I saw home schooling as an impossibility. For some reason, I bought the idea that teachers could not teach their own children, like doctors treating members of their own family. It didn’t occur to me until much later that I had already been home schooling Sarah while she was attending public school and that if I were home schooling Sarah successfully, that I could certainly home school Rebecca. I told Allen that he could go to the seminar, but that I was not interested and didn’t want to have anything to do with it.
The week before the seminar, Allen injured his back at work and had to be taken to the emergency room where they filled him full of drugs to deaden the pain. He came home and spent a week lying on the living room floor, spaced out on pain medication. He begged me to go to the seminar in his place, “After all, it’s all paid for!” I reluctantly agreed to go, but was not at all enthusiastic.
When I got to the seminar, I was surprised to find that Allen was not registered. The name tag was already made out in my name! I began to realize that maybe the Lord had something for me to learn here. In the morning session there were two guest speakers, Meg Johnson, a pioneer in the home schooling movement who home schooled her children, and Rev. Paul Lindstrom, Headmaster of Christian Liberty Academy Satellite Schools in Illinois. When they finished the morning session, I was convinced that not only could I home school Sarah, but that it was very important that I try. Up until this year Sarah had had a great excitement for school. I could already see that enthusiasm withering and I didn’t want her to lose her love of learning.
I left right after lunch. There was an afternoon session that I skipped. I just wanted to get home to tell Allen how I thought we could school Sarah using materials from C.L.A.S.S. I came home, burst through the door and sat babbling for about a half hour. Allen sat quietly and listened. When I stopped to catch my breath, he said, “Well, I’m glad that you are convinced. I was afraid I was going to have to persuade you.” He had already made up his mind before I had gone to the seminar.
We made a list of reasons for and against home schooling Sarah:
1. Each year in public school, she had a new school and a new teacher. She never got to make any lasting friendships. Plus, each year the first few months were spent with the new teacher gathering her materials.
2. She would probably never go to school in Fulton. (She hadn’t so far.) Home schooling meant no more bussing hassles.
3. She would have a curriculum that progressed in a logical fashion each year, not something that this year’s teacher had thrown together. (In public school she studied dinosaurs 5 times!) That curriculum would have an overall plan that would extend for more than the present year.
4. Her therapies could be done at home, or I could make arrangements to see the therapists in such a way that she did not lose academic time. I could also integrate therapies into her daily activity.
5. Mainstreaming was not realistically occurring within the public schools. Sarah was mainstreamed for phys. ed., music and art, but she did not even know the names of the teachers in these classes, so how many children was she realistically interacting with? It was obvious that she would never be mainstreamed beyond these few subjects, because she was falling farther and farther behind academically. (A child receiving physical, occupational, visual and speech therapies and leaving class for each, can barely keep up, much less reclaim lost ground.)
6. More and more, children with behavioral problems were showing up in Sarah’s classes. She was learning their tricks and behaving in less and less appropriate ways. Rather than having good role models, just the opposite was happening. Through the home schoolers support group in Syracuse, we hoped to provide her with more positive interaction with children.
7. Sarah needed lots of special help and encouragement to keep trying. If she had good teachers, she did well and worked hard. But more and more, we were learning that we had very little control over her environment, once she got to school. I learned later that her last teacher had been told several times by her visual therapist that the paper work that Sarah had been given to finish (to gain a party) was totally inappropriate for her. She could not see the work she was required to do. The teacher was given black pens to write her math problems for Sarah, for example, but they were never used. I knew what Sarah responded to and could take the time she needed to successfully complete each exercise.
8. The C.L.A.S.S. curriculum was Christ centered. We liked the idea of practicing our religion and incorporating our lifestyle into her education and rebuilding her confidence.
9. The materials we would be using would be high quality printed material, easy to see and use. There were no dittos.
10. I had also noticed that Sarah seemed to think better if she thought out loud and could talk to herself. This was a definite “no-no” in public school.
We decided to ask Sarah what she thought about staying home to be taught. She literally jumped up and down with joy. It was then, that she told us about being sent out in the hallway all alone to finish her work. I wondered what would have happened if she had had a seizure out there. This classroom is right next to an exit for the building. What would have happened if she had just wandered off or if someone had wandered in and taken her away? The teacher would have never known.
We contacted Christian Liberty Academy immediately and registered Sarah. Sarah came down with a terrible croupy cough which didn’t want to go away. She stayed home, quite ill, for a couple of weeks. I began to wonder why the Lord would allow her to hang on to this cold for so long. But it gave us the time we needed to get her curriculum. When the books came, we notified the school that Sarah would not be returning. Allen had a long talk with the teacher. I notified the Assistant Superintendent of Schools for Fulton, that I was quitting substitute teaching to home school and we started. Strangely enough, and to our relief, the only thing the Committee on the Handicapped was concerned about was that we know that they were no longer responsible for Sarah’s therapies.
Sarah had such fun and learned so much in those few months, that Rebecca begged to be home schooled too. We could not justify giving Sarah every opportunity to progress at her own speed in a Christian curriculum without giving Rebecca at least the same opportunity. So, in the fall of 1985, we began home school both children.
“There is a time for everything, and a season for every activity under heaven:”
One day I was at our little neighborhood grocery store when I heard a little girl (probably 2 or 3 years old) pleading with her mom for some cereal. When the mom refused, the child looked her straight in the eye and said, “You are the meanest mom in the world!” The mom didn’t hesitate for a second, but immediately replied, “And don’t you ever forget it.” At that, the little girl broke into giggles. As I walked home, I thought of how wise that response had been. The mother didn’t lesson the accusation at all, but absorbed the comment and affirmed the sentiment, which made the little girl realize how ridiculous it was. I filed that incident away in my memory bank.
As we began to home school, we discovered what a profound effect the public school had had on our family. Sarah had been taught that she could not learn. She would sit and pout and cry when she attempted something new. She would say, “This is too hard. I can’t do this.” I would tell her, that it might be too hard, but I wanted a “good try”. I decided she had to give me 20 solid minutes of good effort before we would give up on something. To motivate her further, I put her most difficult subject right before lunch (her favorite activity).She was sometimes late for lunch, but she never actually missed lunch. And she learned that when she had something to accomplish it was worth the effort to see it through. One day, through tears of rage she shouted at me, “You are the meanest mother in the whole world!” But I was ready. Instead of getting angry. In my most commanding voice I said, “And don’t you ever forget it, now get back to work.” As I walked out of the room I could hear her start to laugh and she went back to work.
Rebecca was just the opposite of Sarah. She had been bored in public school. The public school teachers had told me time and time again how slow Rebecca was in finishing her work. But her first week home, at the beginning of a second grade curriculum, I gave her a math test with 100 addition problems. She finished it in 5 minutes and only missed 2 answers. In public school there is no reward for finishing early. The child who finishes early still has to wait for everyone else. At home, once she was done with her assignments, she could do what she wanted. She got very good at reading my lesson plans and doing much of her work by herself. She also helped me teach Sarah science and history. We’d read and discuss those subjects together. The girls also helped each other study for tests. Sometimes I’d get stumped for a new way to explain something to Sarah and Rebecca would pipe up, “Sarah, remember when we did thus and such together? Or we talked about something or other? It’s just like that.” And Sarah would have it.
Sometimes Sarah would get frustrated because everything came so easily to Rebecca and she worked so hard just to keep going. We had to explain to her that she was always going to have to work hard. That was just a fact of life. It didn’t make her any less important than Rebecca. It just made them individuals. No one butterfly is more special than any other just because they are different colors. God made us all different to put some spice and jazz into the world, to make life interesting. Sarah would go far if she were willing to put in the work that is necessary each day.
My children were not the only ones adjusting to this concept of home schooling. My parents were having their own concerns. After all, weren’t moms supposed to look forward to the day when their kids went off to school? That’s when moms “found” themselves by going into long delayed careers. Right? Didn’t parents need a break from their children? Would keeping the kids home shelter them so much as to cripple their social development? I know these were concerns for my parents. My mom expressed it this way, “It’s very hard for our generation to understand this. We were taught that parents just turned their children over to the school district and that was that.” But after a year of home schooling, when it came time for us to sign up for another home schooling convention, they were happy to come stay with the girls while we went to the convention for two days. After the first day, we came home to find my dad sitting on the couch with the girls grinning. Dad said, Sarah had read Dr. Seuss’s, Green Eggs and Ham to him and “she reads better than I do.” The following year they went on a cross country camping trip. Before they left, they bought a huge map of the US which we stuck up on our dining room wall (our classroom). We charted their progress as they went on the map on the wall. In each state they took pictures and bought post cards which they sent back telling of the areas they were going through. Pictures of Mom in front of a huge cactus or Dad near a spectacular view. It was a wonderful experience and a very special time for us all.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1:3,4
We had only been home schooling a few months, but had said we’d allow our telephone number to be given to other parents of handicapped children who were home schooling. We told our other home schooling friends that we’d had some experience battling with our school district which we would be glad to share if the need arose. As far as we knew there were no other parents of handicapped children in all of New York State home schooling.
A few days after Christmas, 1985, we got a call from a lady who was visiting relatives in a nearby town. She said they had a son who was non-verbal and had cerebral palsy and was currently in public school. But they were unhappy because they were home schooling their other children and wanted to bring their handicapped child home too. She had heard we were home schooling Sarah. Could they come over for a chat? If they would allow me a few minutes to run the vacuum cleaner, it would be fine with us. We spent the afternoon getting to know Dawn & Philip Wolcott and their son Michael. They had all the same questions we’d had (still had) before we started home schooling. We discovered we were very much alike. A friendship began that day that is still very special to us. They decided to begin home schooling Michael.
In 1988, they decided to do for other parents what we had done for them. They started Parents Instructing Challenged Children (PICC), a network of parents who are home schooling children with handicapping conditions or who want information about home schooling a handicapped child. Dawn allowed their home phone number to be circulated as a contact person. She developed a lending library of donated books, and audio and video tapes, from authors writing about home schooling or handicapping conditions, etc. She spoke at home schooling conventions and wrote home schooling articles relating to her experiences or to home schooling children with special needs.
At the same time we were heavily involved in our local Loving Education At Home (LEAH) chapter, organizing field trips, parent meetings, parties and special events for home schooling families in Oswego county just like they had in Syracuse when we first started. We had about 20 families in our group, but it was growing rapidly. We were grateful to the Wolcotts for wanting to take on the special support parents of handicapped children needed.
In 1992, Dawn was in an auto accident and injured her brain stem. She valiantly said, “The Lord has allowed me to be handicapped to understand what my son goes through when he’s trying to express himself.” But for awhile she could not process information quickly in her head. As a result, she could no longer field the PICC telephone calls. She asked if we would help. We were glad to do that. By 1994 Dawn was fully recovered, but their family felt drawn to a new ministry, so they asked us to take over all of PICC’s responsibilities. This has been a source of great joy for us.
PICC has grown as well. Our membership within New York State is over 80 families. Each year we answer dozens of phone calls and mail out information to answer hundreds of inquiries about home schooling children with special needs. We developed a World Wide Web page and got requests for information from as far away as New Zealand. We provided a bi-monthly newsletter, access to a lending library, and spoke as the opportunity presents itself about the joys and challenges of home schooling children with handicapping conditions. It was hard work, but brought us great joy. I told Allen one day, “I get to talk to the cream of the crop every day. At a time when all you hear is how uninvolved parents are with their children, I get to talk with seriously committed parents dealing with extraordinary circumstances, facing incredible challenges, often with great courage and forthrightness. It’s the best job in the whole world.”
“Wisdom is supreme; therefore get wisdom. Though it cost all you have, get understanding.” Proverbs 4:7
When you have a severely handicapped child, you wonder when and how to discipline. Does she understand what she’s doing? Is she doing it deliberately? Does she understand why she’s being punished? All of these questions were undermining my ability to set limits on Sarah’s behavior. Then I heard about Dr James Dobson’s book Dare to Discipline. Using his guidelines for how to interpret behavior, I discovered how to set limits and to enforce them.
Even though Sarah had severe handicaps, we decided, she had to learn to live in the real world. People would have to make allowances for her handicapping condition to some extent, but they should not have to put up with rude or nasty behavior.
We had a friend who had a hound dog puppy. It was the cutest little thing you ever saw. It was just adorable. They laughed and laughed when it dashed across the room and hurled itself into their lap to snuggle down and go to sleep. But that puppy grew up to be an 85 pound dog which still dashed across the house and hurled itself into their laps when it wanted to go to sleep. It was a terrifying experience that they could not break. They finally had to get rid of the dog.
We began to ask ourselves with regard to Sarah, “This may look cute now, but what will it look like when she’s 30 years old?” Will it be appropriate behavior then? If not, we would try to discourage it.
Sometimes parents of handicapped children tell me that it seems to take forever for their child to learn things. They repeat and repeat and repeat and repeat things. For the first 5 years of home schooling Sarah, I had to sit with her for a minimum of 3 or 4 hours and work with her on every single task. Each time something new was introduced to her she’d whine and complain that it was too hard and she’d never understand. Each time I’d remind her of something she had learned that had given her the same feelings before but that she’d triumphed over. For example, “Sarah, do you remember how scared you were when we first started to work with fractions?” “Yes, I didn’t think I’d understand.” “And now, when you add them or multiply them what do you think?” “They are easy.” “Yes, and decimals will be the same way, trust me. OK?” I had to coach, cheerlead, cajole, and push her to finish each assignment. Sometimes I wondered if it were ever going to be worth the effort. Slowly, Sarah’s confidence began to develop. And by the time we were nearing the end of our home schooling experience, she was able to take an assignment and work on it to completion by her own, whether I was in the room or not.
One day a lady called me during school hours. She was crying and panicked. She said, “My daughter and I have been fighting so much. This is so hard. I must be doing something wrong.” She was a new home schooler, hearing other home schoolers brag about how their children were completing 2 grade levels of studies each year. She was repeating and repeating and trying to encourage, but feeling totally frustrated. She poured out her heart between sobs and said she was just about ready to quit, but she knew the public school setting her daughter had been in was even worse. So she needed to talk to someone. She picked the right person. I had had a big brawl with Sarah earlier in the week. I gave her the entire story in great detail and with much emotion. I told her that my daughter had yelled at me that she thought I was “the meanest mother in the world!” At that the lady gasped and said, “Oh, you do know how I feel.” Then I told her my response. “And don’t you forget it.” I heard the woman chuckle. (Thank you Lord!) I told her my secret was told to me by a social worker from the Light House (Aurora) in Syracuse. He asked me if I ever had days when I wanted to run away from home. I said I did. He asked if I’d noticed that they seem to happen right before something super is going to happen, some kind of a break through in the child’s behavior. I hadn’t noticed that, but decided then and there to start watching for it. He was right. About a week, or even a day or two, before something great would happen in Sarah’s development, all hell would break loose around here. If we could hold on for 48 hours or so, something wonderful would happen to turn it all around and make us grateful to be alive. It’s like Satan knows if we get to that day, we’ll be encouraged again, so he throws all he has into getting us to quit before then. I have told other people about this, and they have noticed the same thing. We talked for a few more minutes, then I hung up the phone. As I turned around, there was Sarah sitting there staring up at me, waiting patiently for me to read her math lesson to her and give her the assignment. I thought, “Oh, God, what have I done?”
I carefully explained to Sarah that we are extremely proud of her, that she has worked so hard and come so much farther than we ever thought possible and that I didn’t mean to say anything bad about her to the lady. But the lady had been in a panic because things weren’t going well. She thought she was doing something wrong because it was hard work. She was thinking of quitting, so I told her all about our difficulties to try to help her see that things like that happen to everyone.
Sarah thought quietly for a minute or so, then looked at me and said, “Well, Mom she’ll just have to learn that every day is hard work. You have to get up and work hard each and every day.” See why I love this kid?
As the years went by, we worshiped in many churches in our area, but felt the most comfortable in a Lutheran service. We went back to the church we had been asked to leave so many years before. After about 6 months of membership, Allen was asked to be an Elder and was eventually asked to be Chairman of the Elders. As part of his job, he was given the privilege of preaching from time to time when the Pastor was away. Allen really enjoyed preparing for services and researching his sermons. He preached a great sermon too, even if I do say so myself.
In preparation for one of his sermons, he was looking up something on baptism and he found something interesting. He found a story about a text from the Greek poet and physician Nicander, who lived about 200 B.C. It seems the early church had two words for baptism, “bapto” and “baptizo”, but only one was used to signify the Christian baptism. Scholars wondered why until they found a recipe for pickles which cleared up the mystery. Nicander said that in order “to make a pickle, the vegetable should first be ‘dipped’(bapto) into boiling water and then ‘baptised’ (baptizo) in the vinegar solution. Both verbs concern the immersing of vegetables in a solution. But the first is temporary. The second, the act of baptizing the vegetable, produces a permanent change. When used in the New Testament, this word more often refers to our union and identification with Christ than to our water baptism. e.g. Mark 16:16. ‘He that believes and is baptized shall be saved’. Christ is saying that mere intellectual assent is not enough. There must be a union with him, a real change, like the vegetable to the pickle!”
Sometimes I think I frustrate myself by thinking I could expose my children to something once and expect them to absorb it entirely. How unrealistic that is! I don’t even learn things that quickly. I have to keep reminding myself that we are like cucumbers and we have to keep immersing ourselves in the things that will help us to develop into the people the Lord wants us to be. Discipline is not a one time thing, but a continuous process for all of us.
“When anxiety was great within me, your consolation brought joy to my soul.” Psalm 93:19
When Sarah was about 7, we discovered that there was a wonderful organization in Syracuse called the Light House (now Aurora) which served the needs of the Deaf and the Blind and Visually Impaired in our area. We knew Sarah was legally blind, but we had no idea what kinds of services there are for children with visual impairments. Even though Sarah had been declared Legally Blind by New York State, we still had not been connected up with the resources we needed.
When I was 7 years old, we lived in the middle of Owego, NY, a small town on the Susquehanna River. I walked to school and small candy store about 3 blocks from my home without even giving it a second though. Allen had grown up in Uniondale near Hempstead, Long Island. He and his brothers and sisters used to have to cross a four lane road to get to the candy store near their home. He can tell some pretty scary stories of them standing on the double solid line with cars whizzing past them on both sides waiting for traffic to thin so they can get the rest of the way across.
We live in a very quiet neighborhood about a block from a small grocery store, but Sarah had no idea how to get there and get back. She had never been out of our yard alone and we didn’t dare let her venture that far alone either. We got the idea of training a dog to be her own seeing eye dog, to go with her and stop at each corner, to make her look to see if it was safe and so on. I called The Light House to see if they had any resources for training such a dog, not realizing how silly the idea was.
They forwarded my call to a social worker who said we were setting ourselves up for a big fall. But he said Sarah was entitled to something called mobility training. There was something called a mobility instructor who could teach Sarah how to get around in her environment better. But first we needed to have a visual assessment done, to see what kind of help she needed. A visual assessment was done while Sarah was in school. (She was still in a kindergarten type special ed class at that point.) He watched as the teacher asked Sarah to go get something across the room. She located the object desired and promptly walked over every obstacle in her path (this included other handicapped students). Her peripheral vision was very poor, her depth perception non existent.
It was determined that Sarah would benefit from orientation and mobility training (skills used in finding her way around her environment) and from prisms on her glasses. We were sent to a low vision specialist. Soon she was fitted with plastic prisms that attached like Color Forms to the lenses of her glasses. They put vertical lines on the outside 1/4 of her lense and horizontal lines on the bottom 1/4 of her lense and which left a square on each lense near her nose that was “normal”. To the rest of the world her glasses looked weird. But to her they were wonderful. She adjusted to them immediately. The prisms “pulled” objects around her into her field of vision.
One day we were in a department store. As the clerk was filling a bag with our purchases, she remarked to Sarah, “I’ll bet you’d see a lot better if you washed your glasses and got all that stuff off of them.” I explained, “No, actually she’d see a lot worse. She is legally blind. Those are prisms that help pull objects from her peripheral vision into the field where she can see.” The lady turned bright red. She had not meant to be cruel and she apologized profusely. This was one of the first times I can recall that I realized we were going to have to do a lot of explaining as we went through life with this kid. OK, if we were going to have to teach people, that was alright.
Visual therapy became a tremendous blessing for us. In our home school, visual therapists taught Sarah how to cook simple meals without hurting herself. They taught her how to type one handed. They taught her how to walk around the corner and shop at our neighborhood store. She learned to find her way to the post office and back (about 7 blocks one way). We set it up that one day per week, each girl would be responsible for her own laundry and for cooking dinner. They had to plan the menu, be sure we had ingredients, get ingredients if necessary, cook the meal, set the table, and clean it all up. That taught them a lot and gave me 2 days per week when I didn’t have to plan meals.
Then one day Sarah’s therapist came to me and said, “The next step is to teach Sarah how to ride the bus so she can shop a the mall by herself.” Yike! My heart began to pound. But Ann calmly explained that this was the next step in Sarah’s development and we should continue to progress. Ok. I was really afraid of stranger danger and told her. Ann said, “Oh, we’ll work on that too.” Little did I know....
At first Ann went with Sarah, showing her how to hail the bus, put the money into the box, find a seat, etc. Then she’d put Sarah on the bus and follow it. She’d give Sarah money and ask her to go buy something for her. She’d follow the bus to the mall in her own car to see that Sarah didn’t get off too early. She’d follow the bus back to be sure the bus let her off at the right stop. After several weeks of learning the ropes, Ann declared that Sarah was ready to go it alone. I watched as Sarah went down to the corner all by herself. (She didn’t know Ann had walked around the block and was sitting in her car to follow like always.) The bus came and Sarah got on. I was standing on the porch watching as it pulled away. Then I heard applause. I looked up and saw a number of my neighbors had been watching us both. As the bus pulled away, they applauded Sarah’s independence and my letting go.
Sarah rode across town, bought the item Ann had asked for, then waited for the bus to pick her up. Ann stayed out of sight and kept a watchful eye. On the way home, the bus driver forgot to stop at the corner Sarah had asked him to. He didn’t remember until he was well past it. But by then he knew Sarah, so he said, “Well, folks we are going to take a slight detour”, drove the bus around a couple of blocks and let her off in front of the house. In the meantime, Ann was in a panic. Sarah hadn’t gotten off where she should have and Ann was sitting there waiting. She was very much relieved when she discovered Sarah home again safe and sound.
The next step was to work on Stranger Danger. Ann had taught Sarah that it’s ok to talk to a stranger within a store, but to never leave a store with a stranger. We had to know if she understood the lesson. Ann arranged for another social worker from Aurora to go with her to Jamesway and to try to entice Sarah to leave with her. As they left for the afternoon I was in turmoil. I didn’t want Sarah to fall for the trap, but my heart also told me that if she were going to make a mistake like this, now would be the best time. Do I pray she make a mistake so she can learn from it? Or do I pray that she already knows what to do?
In Jamesway, the lady was telling Sarah that Fays had the same sponges (Ann had asked for sponges) on sale. She asked Sarah if she’d like to go with her to see. Sarah politely declined. The lady persisted a little more, striking up more of a conversation and asking again. But Sarah politely declined. Then the social worker and Ann began to communicate in sign language (should she continue to try to lead her away or give up)? Ann signed back to keep trying for a little while longer. While they were communicating in this fashion, the manager of the Jamesway store came over to Ann and asked what she was doing with that lady and that girl. Ann explained who she was and produced ID. She told him what they were doing and he was much relieved. When Ann told me later, I said a little prayer for that kind gentleman who was also watching out for my girl.
The next step was to find out what Sarah would do if she missed the bus. She was supposed to call me and tell me, then wait for another. Ann had it all worked out. She had another worker from Aurora come with her to try to get Sarah involved in conversation so she’d be distracted and miss the buss. But Sarah wouldn’t talk to her. The following week they tried again, this time the lady was disguised as one of those people who takes surveys. Sarah wouldn’t talk to her. Ann came home exasperated, “I can’t get your daughter to miss the bus. I have to know what she’ll do. We can’t have her panicking if something unexpected happens.”
Ok, we put our heads together and concocted a scheme. With Ann’s assurance that she’d protect my youngest daughter from her older sister once she found out, we enlisted Rebecca. We sent them to Jamesway together. As the bus pulled in to load up, Rebecca hastily announced she had to go to the bathroom and ran off.. Sarah waited and watched as the bus loaded and then drove off. Rebecca was not back yet. Once the bus left, Ann went into the bathroom and told Rebecca the coast was clear. Rebecca rejoined Sarah who yelled at her, “Now we’ve missed the bus!” Rebecca looked at her and said, “Now what do we do?” Sarah said, “We call Mom and we wait!” Then Ann came up and calmed Sarah down, telling her it had been her idea. I had given Rebecca pizza money, so they bought lunch and then caught the next bus home.
But we still had to know what Sarah would do if she were all alone and had to deal with missing the bus. I called the bus station and asked if we could arrange for the bus driver to tell Sarah she couldn’t ride. The manager of the bus station said I’d have to write a letter absolving them of any liability first. After writing the letter, I received a call from him saying to just let the driver know what day we wanted to do it.
We sent Sarah to the store. As the bus approached the mall to pick her up, Ann raced around the bus and blocked it at a stop just before the mall. She jumped on the bus and told the driver this was the day. She wanted him to tell Sarah he wasn’t going her way. The bus driver gave her a big grin and said, “So you are the one who’s been following the bus all these weeks? I’m glad to meet you and find out what you are doing. I was about ready to have you checked out by the police because you were acting so suspiciously — following the bus around town like that.”
The bus driver told Sarah he wasn’t going to our side of town. She got off, got back on and asked if he were sure, got off again, and then headed for a phone. She was really perplexed, but did just what we wanted.
Several months later the girls decided that they’d go for a ride by themselves. Sarah had an orthodontic appointment on the same side of town as the mall. They’d ride to her appointment then take the bus to the mall and do some Christmas shopping without Mom. They got to the orthodontic appointment fine. But they missed the bus to the mall twice and then missed the bus home once. Three times they had to call me and tell me they were going to be later than expected. Then when they finally got home, they said they had another unexpected surprise on the way back. Fulton is a city divided in half by the Oswego River. The Jamesway mall was on the opposite side of the river — the very opposite edge of town. They had gotten back to our side of the river (still about 6 blocks from home) when the bus driver suddenly parked the bus and announced that she was going to lunch. They had to transfer to another bus. Their trip should have taken them about 2 hours. Instead it had taken nearly 5. But they had a great time.
“There is no wisdom, no insight, no plan, that can succeed against the Lord.”
In the beginning of our home schooling, we knew several families in our area threatened with Educational Neglect (child abuse) by their school districts and social services because they wanted to home school and their local district didn’t want home schooling within their district. Back then, the law was very vague. Each district superintendent could decide what families had to do to be “substantially equivalent” to the local school district’s program. Some districts made ridiculous demands on families — for example one superintendent told one family that they had to have each of their 5 boys read a minimum of 15 library books per week. Considering that you can only take 3 books at a time out of the library, you can see how silly this is. LEAH was spinning off local chapters throughout New York State as home schooling became more and more popular. We’d go to home schooling conventions and they’d break us up according to geographic area, so we could pick up new people looking for local support. This also gave us a structure to begin lobbying for changes in the law. We began to write to our State Representatives, the Regents and to the Commissioner of Education for New York State. But the deciding factor was the court cases popping up throughout New York because of the unreasonable demands of local officials. A wonderful legal firm, Home School Legal Defense Association, located in Virginia, began about this time and provided a kind of legal insurance to home schooling families. For $100 per year, families could join. HSLDA pooled their money and defended families under assault for their choice to home school. They were winning cases all over the nation, including in New York. This demonstrated that the current home schooling law was too vague. The State had to do something.
We were asked to join a group of about 20 home schooling parents who were to meet with State officials to start thinking about drafting new home schooling regulations. At the meeting were the Deputy Commissioner and a number of his assistants. During the meeting we got to discussing standardized testing and whether standardized tests were necessary for home schoolers and what standardized tests should be used. Home schoolers present were adamant that the PEP tests used to evaluate public school curriculum effectiveness were not appropriate for home schooling families. We didn’t want to have to teach public school curriculum (the result if our schooling success was going to be judged by a test asking public school curriculum questions). “If we wanted a public school education, why would we spend our own money and our own time and energy for something we can get for free down the street?” We would work against a law that required such testing.
At one point, the state officials said standardized testing was necessary because parents might not otherwise notice that their child had a learning problem. We asked what difference that would make. They said because there were all sorts of resources the public school could provide parents of a child with a handicapping condition. Allen & I disagreed. It was then that we found out that Sarah was still entitled to free physical therapy, occupational therapy, speech therapy, and visual therapy from the local school district. We came home determined to try to get it.
When we came back from Albany, I wrote to our local Committee on Special Education (CSE) informing them that we had learned Sarah was entitled to all of the therapies they had previously provided and requesting the services. I got a call from the committee chairman saying that they would not be providing related services because related services were part of the package that you got if and only if you put the child in public school.
We filed a request for an Impartial Hearing. We received a letter from the hearing officer saying that he had already spoken with the committee chairman and should we have any questions please do not hesitate to call him. We thought, gee this guy is already familiar with the committee chairman we’d better call him and get to know him too. Allen called, introduced himself, and asked, “you have obviously worked in the field of education, can I ask where?” He thought it was a friendly question. The hearing officer refused to say. (Huh?) Allen said, “You mean you won’t tell me?” The guy said, “All you have to do is know that I’m qualified.” Allen said, “Ok, then I understand I have the ability to subpoena people?” “Yes” “Well, here’s my list.....” It included the Deputy Commissioner for the State Education Department and all the aides in attendance at that meeting where they told us we could get related services. That was the end of the conversation. About two days later, the chairman of the CSE appeared on our doorstep holding a copy of Sarah’s file (which I had asked for under the Freedom of Information Act). There was a problem, the Hearing Officer had resigned. He quit because he though Allen would not believe he was impartial. (We think he panicked when he saw all the people from the State Ed Department Allen wanted to invite.) Anyway, there was only one other hearing officer in the area and she was out of town for two months. That would put them in violation of the time limits for a fair hearing. Would we be interested in talking with the new Superintendent of Fulton Schools?
The Superintendent looked at the curriculum Sarah had labored under in public school (including the blue dittos that had been written over with black ink). Then he looked at the beautiful books we’d provided in our home school. He said, “You want an excellent education. We are only obligated to provide an appropriate education.” (I still don’t understand the difference.) Then he ordered that we get reimbursed for our personal expenses in paying for Sarah’s therapies while we were home schooling and said we should get therapies from the district from then on. At that point, the CSE chairman said they could not proceed with any new therapies without an IEP (Individual Education Program) and that required doing a triennial evaluation (a battery of psychological tests) to determine if Sarah were still handicapped. We agreed to begin the IEP process again.
A few days later a man called. In a gruff voice he fired his words at me through the phone, “Mrs Mulvey, I am Mr X. I have been assigned to test your daughter. Would you like me to come there or would you like me to come there?” I said Sarah was more comfortable at home where she was used to doing her work and invited him here. Then I quickly called Home School Legal Defense to see if I’d done something stupid (inviting a public school official into my home — could it cause jurisdictional problems?). I was told we could quit the IEP process at any time, so no, I hadn’t put my home school in jeopardy. They would defend us if we came under attach for beginning this process.
I was feeling more self assured when the day came for the psychologist to arrive. When he came through the door, I asked him if he’d like to have a cup of coffee before they began. I explained that I’d like to have Sarah get to know him a little before he started testing her. He said he’d like a cup of coffee. We sat in the living room and began to talk. It turned out that even though he was near retirement age, he had a young son with beautiful red hair and blue eyes that sparkled impishly in the picture he carried in his wallet. I remarked that it must be difficult to say no to those eyes. He said he had no problem saying no, because he knew discipline was so important to a child’s development. (This was an unusual public school psychologist I began to realize.) He had come from the Boston area. We told him we had spent a lot of time in Boston at Children’s Hospital and so on.
After about a half hour we decided we were comfortable enough to begin testing. He tested Sarah for two days. When he finished I said to him, “Now I am going to tell you what I’ve told her. ... She is never going back to public school. I don’t care how she did on the test. She will never go back to public school.” He quietly said he understood. About two weeks later, he called me and said, “Mrs Mulvey, I knew almost nothing about home schooling when I first called you to set up the appointment for Sarah’s tests. But have looked over her tests and have visited the classroom where she would be placed if we put her in public school. I think she has a number of serious challenges to face, but is doing remarkably well. She is very lucky to be home schooled.” Wow! That was a surprise. What was even more surprising was he said it at the CSE meeting and recommended that she receive the related services while being home schooled.
From time to time we’d be walking around town and this school psychologist would drive by with his car. He was on his way to or from one of the schools. He’d stop, say hello, and ask if we’d like a ride. We would smile back and say, “Yes, we’d love a ride, but unfortunately, we are working on phys ed right now, so we can’t accept.” This would make him laugh, he’d wish us a good day, and then be off.
One day I was saddened to read that Mr. X was retiring from the school district. He had become a friendly face whenever we saw him around town. We also knew he was a sympathetic ear on the Committee for Special Education. He was not afraid to say what he thought was right, even if it meant supporting parents and bucking the CSE Chairman. We would miss him.
A few weeks later my phone rang, “Mrs Mulvey?” a familiar voice asked. “This is Mr. X. I wanted to talk with you for a moment. Have you seen that I am retiring?” I said that I had seen the newspaper announcement and was sorry to hear the news. He would be sorely missed and I told him so. He went on, “Mrs Mulvey, before I left, I wanted to tell you something. When I first came to your home, I was a back-slidden Christen. I had not been in church in years. After I saw your home and talked with your family, I decided to reassess my priorities and have rededicated myself to the Lord. I am very happy and I wanted you to know.” I was stunned, almost speechless. What could I say that would show him how deeply I had been touched by his confession to me? I stammered, but he continued, “But that’s not all. I have been diagnosed with cancer and the outlook is not good. I want you to know that I am ready to accept what will happen because I am confident of my faith in the Lord.” Now tears were rolling down my cheeks.
We had done nothing extra-ordinary when we met Mr. X. In fact I had complained and grumbled at the Lord in the days prior to meeting him. I knew he was going to be hostile to us and I didn’t want him near my family. But by giving him a cup of coffee, talking and listening to him (not about spiritual things, but everyday things), somehow the Lord had turned that into a miracle that he was now sharing with us. How foolish and yet how wonderful I felt. We said our goodbyes. He asked me to pray for certain people in the school district, and I said we’d be praying for him and his family. I never got to talk with Mr X again. A few months after that, I read in the paper that he had gone home to be with our Lord. I was glad to have known him.
“The Lord will keep you from all harm – he will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalm 121:7,8
For a number of years, when we first started home schooling, the Assistant Superintendent who oversaw home schooling was the same guy who had hired me as a substitute teacher when I worked for the public school system. I had known him before that because he’d served on the Committee for Special Education. He was a guy I could call on the phone and ask a question if I had one. Then he got promoted and another Assistant Superintendent was given the oversight of the home schoolers in Fulton. Within a short while, I got to know him as well. And after a while he asked me if he could refer people who wanted to know about home schooling to me for advice.
Then I started to get phone calls from people that began, “You don’t know me, but I just told the Assistant Superintendent that I’m pulling my child from school and want to home school him/her. The Assistant Superintendent gave me your name and said I should call you. You’d help be figure out what I have to do now.” Sometimes I’d have books they could borrow or buy. Sometimes they had a pretty good idea of what they wanted to do. All I had to do was tell them how to file the paper work.
One day I got a phone call that began, “You don’t know me, but So-and-so (she named a friend of mine) recommended I call you. I have a son in public school, special education, who’s being harassed and is bullied. I can’t seem to get anywhere with the people at school. He hates school. I want to home school him and have filed my Letter of Intent. I have not received the papers to fill out yet. But the building principal says I have to leave my son in school until I have the paperwork completely approved. Is that right?”
“No that’s not right. Actually, you have 14 days from the time you commence home schooling to file your Letter of Intent and then start the process. Ask the building principal to send you a letter telling you where in the home schooling law it says you must leave the child in school. There is no section saying that, so he won’t be able to provide that information in writing. That usually makes them back down.” She hung up the phone, said she’d call the building principal and then called me right back.
“He says he’ll be glad to send the letter. He said he checked with the office that oversees home schooling and they told him I have to leave my son in the school until the papers are filled out. If I do that, I’m afraid for his safety. The principal says I can be charged with educational neglect if I don’t put him back into school. What do I do?” She started to cry.
I said, “I know the Assistant Superintendent who oversees home schooling. Would you like me to call him and see what I can find out?” She said she’d appreciate that, so I called. Instead of the Assistant Superintendent, I got his secretary who said the Assistant Superintendent was out and wouldn’t be back until the following week, in the meantime, the secretary insisted, she was very familiar with the situation and indeed, the lady had to keep that boy in school until the paperwork was approved.
“But, if you read the law, you will see that she has from 14 days after she commences home schooling to notify you that she is, then you have 10 days to send the law and the IHIP forms to fill out, then she has 4 weeks to fill out the forms and return them. At that point, the district determines if she is in compliance or not. All that time, she can be home schooling.”
The secretary was indignant. “But if that’s true, it would be months before we’d be able to determine if she was really home schooling or not.”
“But that’s the way the law is written.” I said.
“But that’s just stupid!” She spat back at me.
“If you would just look at the law, you’ll see how it’s written,” I said quietly. I was trying to keep calm and not provoke her. It didn’t work.
“Look, I’m just a secretary here! I can’t make any decisions like that. You’ll have to wait for the Assistant Superintendent to return and talk with him. In the meantime the building principal will be sending Mrs ( ) a letter telling her she has to have that kid in school until determination of compliance is made.”
As politely as possible, I thanked the secretary for her time and hung up the phone. I was terrified. I had made her really mad. If she or the building principal called social services before the Assistant Superintendent got back, things could get complicated. I prayed I had not made things worse.
About 5 minutes passed. It seemed much longer because I was pacing and praying. The phone rang. I answered.
The lady who’d pulled her son from school said, “You have been praying haven’t you?”
“Yes.” I said quietly.
“Well, the building principal just called. He said he’d done some investigating and found out that as long as the paper work is in the process it’s ok for me to home school my son.” She was very happy and very much relieved. My friend was going to share books with her until hers came. She was ready to start home schooling and excited about starting. God is so good.
“Let us not weary in doing good, for in due time we will reap a harvest if we faint not.”
If you have read CS Lewis’s space trilogy, you may see some of the same strategies found in the third book That Hideous Strength employed by our district’s CSE. This is not legal advice, merely a retelling of our story. Parents often tell me that their CSE is mean to them. I fully understand.
We were in the process of asking for a job placement and a job coach for Sarah. She had been given a Vocational Assessment by a specialist hired by BOCES in July 1994. A Vocational Assessment is a series of tests that involve agility, coordination, balance, fine motor skills, and preferences to determine what Sarah is able to do and what Sarah wants to do.
Sarah was 20 years old. She was working on about a 9th grade level. She can type one handed and typed our church bulletin each week using Word Perfect. She also made large print copies of our bulletin inserts on our personal copy machine. She cooks simple meals, washes her own clothes, and can ride the bus across town by herself. She is much more capable than her diagnosis would lead you to believe. The person administering the test said Sarah was definitely interested in clerical work and should be given the chance to work in a clerical situation to see if her expectations were realistic. That was in the summer of 1994.
In August 1994 (shortly after we took over PICC) we got invited to participate in planning the Challenges/Opportunities Conference (a conference for parents who want to home school children with handicapping conditions). For us, the experience was a joy and a disappointment. It was a great conference. The people who came were blessed by the experience. That particular weekend, New York State was hit by a thunderstorm that broke records for damage. Trees throughout the area were broken and thrown around. There was no electricity in upstate New York for most of the day and for some most of the weekend. Our attendance was much lower than anticipated. We did not break even, but we had a great time.
In late September 1994, Sarah’s neurologist began to suspect that her Tegretal (her seizure medication) was causing her white blood cell count drop and perhaps she was developing aplastic anemia (a disease of the bone marrow that causes the bone marrow to stop making blood). There is no cure. Treatment would involve taking her off her seizure medicine (for Sarah there is no substitute) and a bone marrow transplant. We started a series of blood tests and prayed. In February a blood specialist said that he thought her white cell count normally fluctuated up and down and even though it had dropped quite low, it was coming back up and he thought behaving normally for her. We were relieved, but we had to really pick up our work on the conference in order to have everything ready by July. So, from July 1994 until August 1995 we let Sarah’s job opportunity and job coach request slide.
In August 1995 I wrote to the CSE (Committee on Special Education) and asked when Sarah would be supplied with a job opportunity and a job coach as recommended in the vocational assessment. The Committee Chairman called me in September and in an apologetic tone said he thought we had asked for the assessment so that when Sarah had “aged out” of the public school (at age 21) we could transition with an outside agency. I told him he was mistaken. Then he said the district did not have to provide a job placement or a job coach apart from the Bridge Program they ran in their public school. He also acknowledged he could be wrong and said he was willing to be educated. I said I’d check with my sources and get back to him.
I immediately called our case worker at the Office for the Blind and Visually Handicapped in Syracuse. They were the people who had told me to ask for the assessment in the first place. After a few days my case worker called back and said what the CSE Chairman had said was incorrect. The case worker had called our Regional Associate (with the SED) who had said we have the right to home school and have a job and a job coach for Sarah. I called the Regional Associate (a very nice man) who knew our CSE Chairman very well and said he was wrong.
I sent a return-receipt-requested letter to the CSE Chairman in which I quoted the Regional Associate. I said we had waited a year already and wanted things to get moving.
On Thursday, October 28, I got a letter from the CSE saying they had scheduled us for a meeting on November 2 at 11:15 am. OK. I called our worker at the Office for the Blind and Visually Handicapped. He could come. I was getting excited. Things were going to work out. (Not!)
On Friday, October 29, 1995 I received a long winded condescending letter from the CSE Chairman saying that after he’d received my letter he’d also consulted the Regional Associate and it was still his opinion that we couldn’t have what we wanted unless Sarah were in the public school. He would recommend that she be placed in their Bridge Program. He closed by saying that if we had a problem with his recommendation we had the option to file an appeal. He cc’d the letter to the Regional Associate and the Administrator in charge of the SIPPS (Special Instructional Programs and Pupil Services - his boss). The SIPPS Administrator is the guy who in years gone by was the CSE Chairman and said Sarah couldn’t have physical therapy when we home schooled (until we forced him to order it for her). He’s the guy who insulted my daughter’s mobility instructor and said they didn’t provide Rehabilitative Services to anyone in Fulton (until we forced them to do it). I knew if he were involved they meant to fight.
I called the Regional Associate and asked him what he had told the district that made them think I was wrong. He said he’d told them they have to provide the services whether they like it or not. He said there was some serious mis-communication going on. He said he’d like to come to our next CSE meeting. I asked him if he were available at 11:15 on November 2. He said he couldn’t come to Fulton, but he’d be available by phone, to ask for a speaker phone in the room, so he could hear what was going on and we couldn’t say “he told me this” and have someone else say “he told me that”. I sent another returned receipt request letter to the CSE requesting a speaker phone in the meeting room.
On Monday (10/30) the Committee Chairman left a message on our answering machine to say they were moving the meeting time from 11:15 to noon “to give us more time to talk”. We scrambled around to see if our witnesses could come at noon instead. Our case worker from the Office for the Blind and Visually Impaired said he could. On Wednesday, Nov. 1 (the day before the meeting) I finally got a hold of the Regional Associate (who would be with us via speaker phone from Rome, NY). He could be in the office at noon, but he also said he had gotten a phone call from the CSE Chairman at 9 am who told him it would be unnecessary for him to stay around because they weren’t going to accommodate our request for a phone. He said there was no jack in that room. I told the Regional Associate that we had a speaker phone and 50 feet of wire which we would take with us. We weren’t going to be put off.
I called the CSE Office to tell the secretary we were looking forward to our noon meeting. I got the Chairman instead. He said, “Well, now that I have you here on the line, I should tell you that we will not be able to have a speaker phone in the room. The room in which we meet does not have a jack.” I said, “That’s no problem, we have 50 feet of wire. We can string that from another room.” He told me I did not understand that the phone system would not allow that. I said, “You know, it’s starting to sound like you are preventing us from having one of our witnesses there.” He asked who? I said, “The Regional Associate.” He got angry and started to stammer that if the Regional Associate wanted to be there, why couldn’t he just drive over here? He was certainly not trying to keep us from having the Regional Associate at the meeting. He ended by saying he would see what he could do about a phone.
November 2, noon, we arrived at the Board of Ed building. There was a jack in the conference room, but when we tried to dial out, the phone system wouldn’t let us. The CSE Chairman started to pace the floor and mumble to himself. “This is very frustrating. We certainly want you to be able to have your witness here...” They moved us two times, before they found a room with a speaker phone. The temperature in that room was about 80°. (Part of the plan to make everyone frustrated before they got there and uncomfortable so they would want to leave.)
I looked over the committee. There was the Administrator for SIPPS. Next to him was the parent member of the committee, from the tone of the friendly conversation she was having with the SIPPS Administrator, I suspect they are neighbors and good friends. The other member of the committee present was a school psychologist who looked like she resented missing her lunch. Then there was the lady who had done Sarah’s Vocational Assessment. She is very nice, very understanding, and I believe really did the best she could for Sarah. She had no vote and she was on a tight schedule we were told. And now we were delayed because the phone didn’t work. Everyone looked annoyed but we knew this was part of their plan.
The meeting started with everyone introducing themselves. The Committee Chairman described Sarah as severely handicapped, borderline mentally retarded and just slightly above the vegetative state. I disagreed and described Sarah as a very capable girl, working on about a 9th grade level. The lady who did the vocational assessment agreed and explained that Sarah had no interests other than clerical work. She said she thinks Sarah should be given the opportunity to see what that would really be like. She thought Sarah would be great at it. But she also said that when she’d made the recommendation she’d thought it would be for Sarah to participate in their Bridge Program in the public school. Then the Administrator and CSE Chairman carefully explained this would be part of Sarah’s program if she were in their Bridge Program in the public school. But that the job placement and the job coach are overseen by the special education teacher (a certified individual) who knows the child and that can’t be done for someone in the home school setting. It would be impossible for the teacher to get to know Sarah if she weren’t in their program. The parent member said, “It sounds from what I understand of what you are asking as if you are asking for the best of both worlds.” We said, “Yes we are.” She looked surprised when we said that.
At this point the Regional Associate interrupted saying he had other things he had to do. He asked if he could make a statement and then sign off. He said, “I am not going to take sides in this, but I am going to tell you what the courts have said. The courts have said, (1) the parents have the right to choose to home school and (2) the parents have the right to ask for any services contained in the IEP that they don’t think they can handle.” The Administrator and the Chairman started to stammer and protest. The Regional Associate continued, “I know you don’t want to hear that. But I’m telling you that’s what the courts have said you must do.” The Administrator said, “How are we supposed to do that?” The Regional Associate said, “That’s not my job. My job is to tell you what the courts have said. You are the administrators. You get the state aid. You figure it out.” He asked if there were other questions and when there weren’t, he said goodbye.
At that point, Allen handed out copies of US Code 42 which says that any person acting under color of law to deprive any citizen of their constitutional rights or privileges can be made personally liable for their actions. As he handed copies to the committee members he explained that he was taught this the first day of training at the Police Academy. He told them that each one of them could be sued individually. They would not be under the protection of the school district. As he handed a copy to the parent member he added, “They didn’t tell you that when they asked you to be on this committee I’ll bet.” The parent member looked solemn and whispered, “No, they didn’t.” Then he said a free public education is the right of every citizen and he thought they were trying to deprive his daughter of her rights. We further explained that for years they had told us she was not entitled to physical therapy or rehabilitative services. Services easily obtained by home schoolers in New York now. I said that no matter what we ask for whether it’s physical therapy or a phone connection, they (the Administrator and the CSE Chairman) say we can’t have it until we force them to do it. I told them that we had given Sarah the best start we could. We had taught her to read. We taught her math. We saw that she learned to get around town by herself, and that she’s ready for the next step. I said the district has the resources to help us in getting her integrated into the work force and we wanted them. The parent and the psychologist started studying their hands.
At that point the meeting evolved into us making a list of what we thought Sarah’s educational goals were and dividing up the list into what they would do and what we would do. I will teach her math, reading, and conversational skills, plus whatever job oriented skills I can. She already knows how to use a computer and copier (that surprised them). If I get stuck I will ask the special education teacher for help. They will provide a clerical job placement in the Fulton area, a job coach, and mobility instructor to help her get to and from work safely (that was suggested by our case worker from the Office for the Blind and Visually Handicapped - we were glad he was there). We expect to have a great deal of communication with the job coach and any help we need from the district.
After this meeting, Allen went back to work and told his boss what had happened. He told his boss, “The thing that makes me so mad is that I know Sarah would be great at a job like putting the data into our data base for parking tickets.” His boss said, “I’d have no problem with that.” What?!! And that began a 6 month internship for Sarah in the Parking Office at Public Safety. She worked one day per week entering data into their database and loved it. At the end of the year she was phased out, but she had her work experience and some great job evaluations by the people who had worked with her.
At age 21, we have signed Sarah up with an Employment Agency that finds entry level jobs for handicapped people to find a job for her. They help the handicapped person find a job, provide a job coach, and then a retention specialist follows up to see that the employer and employee are both happy with their performance on the job. So another adventure has begun.
“May he give you the desire of your heart, and make all your plans succeed.” Psalm 20:4
As our girls got older we began to set the stage for college. When Rebecca was 15 years old, she was showing a great deal of interest in plants. She had a few house plants, and my parents had given her a grow light so she could start the seedlings for their garden one year as they traveled. She realized her African violets liked the grow light too. Allen decided about that time to build lofts in their room so they could sleep on top and hang their clothes underneath. Their rooms were so tiny this gave them more floor and storage space. Behind their clothes rack, there was a space about 1 ½ feet wide which was theirs to fill. Rebecca asked that Allen put flourescent lights on the underside of her loft and she created an indoor garden about 8 feet long.
That fall, Allen had to go to the State University College at Morrisville to do a background investigation on a new guy they had hired for campus police at SUNY Oswego. I asked if we could go with him and see the campus. That was fine. We made an appointment with admissions to have a tour of the campus. We ended up in the horticulture building, talking with teachers there. We spent about 3 hours talking with them once they realized how much Rebecca already knew about plants. We had a wonderful time and Rebecca began to think seriously about going to college.
When she was 17, a neighbor (a good friend) took Rebecca to see Country Herbs and Flowers. a perennial garden just outside of Fulton. She was so taken with the place she insisted we go out and see it too. It was a remarkable place, absolutely beautiful when in full bloom. As I walked around the retail area, looking at the beautiful plants for sale, a sales woman came over and began to talk. I told her Rebecca wanted to study horticulture in college. They walked around together for awhile and Rebecca began to identify plants for her. The gal asked Rebecca how old she was. When she said she was 17 years old, the lady said, “Well, you are old enough to work! Go ask the owner for a job.” She told the owner of Rebecca’s desire to work with plants and he hired her. At first she picked flowers they grow and dry for their dried floral arrangements. She worked afternoons, after she’d finished her school work. It was back breaking work, but she loved it. They asked her to come back the following summer. She finished up her school year early so she could start working in April. She came home muddy and exhausted, but she loved the work.
We signed her up to take the PSAT’s and then the SAT’s with our local school district. I didn’t know it, but every student (even if they are home schooled) has a guidance counselor. Rebecca’s guidance counselor was glad to meet her after all these years. Signing up for the tests was no big deal, just fill out a few forms and send in the money. Then have her there the day of the test. I didn’t fuss about the tests. I knew Rebecca was a good test taker, so I told her to just have fun.
The morning of the SAT’s we entered the school building. Rebecca didn’t know anyone there. I asked a lady standing in the hallway if this was where the SAT’s were going to be given. The lady looked at Rebecca, smiled a demonic smile and said, “We are going to put you through hell.” As I walked out I thought, great, just what the kid needs to hear! I prayed all morning and went to pick her up. As she got into the car she was all smiles, “It was easy.” Oh, dear, now I was really worried. I need not have been. She scored 1200, in the 90th percentile.
She began to apply to colleges. We knew that in order to get any kind of financial consideration (scholarships, loans, etc) the applicant has to have a diploma of some kind. Since New York State has copyrighted the word “diploma”, home schoolers can’t give their children diplomas. Rebecca would have to take the GED. Who would have anticipated what an incredible adventure this would be?
I called our local public school. “I’d like to sign up my daughter to take the GED.”
“Fine, all she has to do is come in and take a 60 hour class.”
“So she’ll be ready to take the GED. We don’t let just anyone take the GED. You could be taking the spot of someone who was ready.”
“But she scored in the 90th percentile on her SAT’s. I think she’s ready for the GED.”
“If she scored that high on the SAT’s why does she need a GED?” I explained.
“Then she will have to come in and take our screening test to prove it.”
I made an appointment for her to take the test, then thought better of it. I called Albany to see if she’d have to take a screening test and the person I spoke with said she didn’t. I called the public school GED office again and told the lady I’d talked to before that I knew Rebecca didn’t have to take the screening test. I asked that they sign her up. The lady asked if I’d bring in a copy of her SAT scores so they could have it in their file to show why they hadn’t done the screening test. I took it up to them. Then I waited. Rebecca did not receive word that she was signed up for the next test or the one after that. I began to suspect the lady in the GED office had not filed our paperwork to apply. I wrote to the Superintendent. He called me immediately.
“Mrs Mulvey, shame on me.”
“As in everything else, you have the oldest children within the district being home schooled. Whenever you do something, you are breaking new ground. We have changed our GED policy now. The lady in the GED office now has instructions to ask if the child has been home schooled. If the answer to that question is ‘yes’ then she is to send the application to me and I’ll handle it. Rebecca will be signed up for the next GED.”
Once again Rebecca took the test without any concerns. When it was over, she smiled and announced that the most difficult part was having to wait for the rest of the time to pass after each test when she was done early. Once again I began to sweat. When she got her diploma, it came with her test scores... 55 for this, 60 for that, and so on. Since she had the diploma, I knew she’d passed, but the scores puzzled me. So I called the lady who had said she’d have to prove she was ready before she’d sign Rebecca up for the GED. I asked if she could explain what the scores meant. She said that for each test she couldn’t tell me what the maximum score was. It was different for each test.
“But I can tell you this. The highest composite score is 300. That’s the highest overall score you can get.”
“Well then Rebecca did pretty well!” I said.
“What was her score?” The lady couldn’t resist asking.
“309" I said.
“OH MY G_D!!” The lady exclaimed, “That’s the highest score I’ve ever heard of!!”
Rebecca is now in her third year at SUNY Cobleskill and studying horticulture. She received her Associates Degree (with honors) in Nursery Management in the spring of 1998 and has continued on there to achieve her Bachelor’s of Technology. When she first went away to college, Rebecca had me make a counted cross stitch banner for her room:
“Make it your ambition to lead a quiet life, to mind your own business and to work with your hands, just as we told you, so that your daily life may win the respect of outsiders and so that you will not be dependent on anybody.” I Thessalonians 4:11
Sarah had me make a cross stitch of her favorite verse as well....
“Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.” Philippians 4:8
Not to us, Oh Lord, Not to us,
but to your Name be the glory,
because of your love and faithfulness.”
The year is 2021. Allen wants to publish this book, but SO much has happened since I last wrote anything, both girls are in their 40's. We are both in our 70's. I felt we had to add an addendum.
Rebecca graduated with honors from SUNY Cobleskill with a Bachelors degree in Nursery Management and Horticulture. But it was not without some drama. She wanted to go to Longwood Gardens in PA to do her internship for her degree. We went down for an interview and she was encouraged to apply for multiple positions. She came back, filled out the application and gave it to her advisor and that’s as far as it went. Months later, when she inquired to Longwood about her application, she discovered they’d never received it. Her advisor said, “Oh, yeah, I guess I forgot to complete it. Oh, well, you’ll have to find another internship or you won’t graduate.” He said it was her responsibility to find a suitable internship. She was crest fallen. She had no idea where to go. Allen was sitting at his desk at work the next week and told the story to one of the patrolmen, who said, “I know a guy who has several greenhouses just outside of Fulton (where we lived) and he’s always looking for help.... If you want, I can ask him if he’d be interested in providing Rebecca with an internship.” He did and the friend was. Rebecca went out for an interview which went very well. Her advisor reluctantly agreed to the placement and she was all set.
In February 2000, she was driving home from the internship in an ice storm, slid off the road and rolled her car. She was not hurt, but her car was in the shop for a while. We drove her to work while she waited for it to be repaired. One morning she mentioned to Allen that there was this guy there who was lots of fun to work with. He had a great sense of humor and it was clear he’d really made an impression, “except he’s SO old.” Allen hadn’t seen anyone he’d thought was “old” so he was curious. As time went on, it was clear Rebecca was very smitten with this guy. Eddie loved the same plants, he had the same dreams, they shared a lot. He was older, and divorced because he’d had cancer as a young man and his first wife wanted children. Rebecca had told us from the time she was about 6 years old she didn’t want to get married or have children. All through college it was the same, “Mom, I’m never getting married, get over it.” But soon it was clear, she and Eddie were in love and meant for each other. He had a small perennial farm but worked odd jobs to make ends meet. If Rebecca had gone to Longwood, they might never have met. As it was, they were married on April 22, 2001 (Earth Day, but that was not part of the plan). There’s a whole other story about how we lost the church 2 weeks before the wedding, how the day of the rehearsal there were 8 foot snow banks in the parking lot of the hall where they were married and how it was 80+ sunny degrees the day of the wedding. It was beautiful. They were married 10 wonderful years when he was diagnosed with pancreatic cancer. She began to read up on all sorts of holistic ways to help him. He joked she fed him “twigs and bark”, but he worked hard in their nursery every day, even while he was getting chemo treatments and when he died in 2017, people were shocked. They had no idea he’d been so ill. He was such a joy to know. There are countless “foster” kids who say he was the closest thing to a Dad they ever knew. What a blessing it was for her path to Longwood to have been blocked. People sometimes ask me, “How do you know what God’s will is in your life?” For me it has mostly been in hind sight. I look back and see how He’s guided, protected and blessed us, even when we have no idea what’s going on.
Rebecca has become very active in her church. She has a gift for helping people dealing with illness and grief. People in very difficult circumstances seem to seek her out to talk. Her faith, her courage, optomism, and compassion amaze me. She is fearless, loving, and extremely kind.
Our little church in Fulton was fading and we’d begun worshiping at our good Pastor friend’s Lutheran church in Rome, NY. I again taught Sunday School and sang in the choir. Allen became an Elder and so forth. It was a long commute, but well worth it. Pastor’s health began to fail and Allen was asked to become his Pastoral Assistant and help with visiting shut ins and preaching when Pastor needed time off. Allen loved it. But the commute in the winter was brutal. In 2004, we bought a big home right in the middle of Rome so we could be closer to church. Through friends from church, Sarah found clerical work in City Hall (3/4 of a mile away) in Parks and Recreation. We got related services from CABVI, the Central Association for the Blind and Visually Impaired, in Utica, NY. They are an amazing organization and when Sarah’s job with the City ran out, CABVI hired her on their glove line - packaging examination gloves. She walked 3/4 of a mile downtown to catch a bus to Utica to work 3 days/week, in all sorts of weather. The only time she didn’t go was when the busses weren’t running. Our Pastor retired, the new Pastor didn’t need an Assistant, and Allen is now really retired.
Sarah, where to start, I guess at the end and I’ll work my way back. She moved out of our home on January 1, 2021. She moved into her own one bedroom apartment in an apartment building about 200 yards from CABVI (Central Association for the Blind and Visually Impaired) where she still works as a glove packer. They package gloves for the TSA and other professionals. She’s been there almost 10 years now and absolutely loves it. She’s so happy now that she can just get up and walk over to work. She loves exploring the community and going to the grocery store down the street by herself. She loves cooking. She has also been exploring Utica, NY. There is a firehouse between her apartment house and the little grocery store she frequents. Apparently the firemen are used to seeing her walk by because one day, on the other side of town, a fire truck tooted at her, and the firemen all waved as they went by. She has really blossomed this year and she’s gotten more fit, dropped 30 pounds and 4 sizes. She’s more happy, more confident and really enjoying the experience.
Whenever she hits a snag, she texts us. Some are quite comical, “Mom, I’m so glad you set the smoke detectors off so many times when I was a child because now I know what to do when I set the smoke detectors off.” Wait? What? Why are the smoke detectors going off? All was fine, no need for me to panic. LOL! I asked her to send me a text every evening when she gets home so I know she got home all right. She tells me how many boxes of gloves she’s packed. One night she wrote, “I only did (so many) boxes. I would have done more, but we got interrupted by the fire... (Then she changed subjects and talked about something totally different.)” Wait? What? What fire? How close to you was it? Was anyone hurt? It wasn’t a real fire, someone burned some popcorn and set off the smoke detectors, so they had to evacuate. But all in all she’s doing very well, managing her own budget, paying her own bills, taking care of her own pharmaceuticals, etc. The people in her building couldn’t be more nice. It’s such a blessing. She and Rebecca are very close. They text each other and talk on the phone regularly. They enjoy sharing cooking tips. They both love to cook.
Allen and I are home all alone for the first time in 45 years. It’s strange and wonderful. I have been helping Rebecca keep her nursery going since Eddie’s death. I worked out there before he died, so I know what many of the tasks involve. I work while she’s at Market and keep everything watered. I spend the night, we have big supper, talk and watch movies or tv. It’s a special time. Then the next day we work together and I go home. It tuckers me out. But it’s great fun. I love it.
In April 2018, long story, we incorporated Bread of Life Lutheran Church which we started two years earlier here in Rome. In 2019, we started meeting at the Rome Rescue Mission on Saturday mornings at 10:30. Pastor David Worley would come up from near Binghamton to preach every other week. When he retired, Pastor Peter Saie from Trinity Utica began coming every other week to preach. Allen preaches on the weeks when we don’t have a Pastor. On July 10, 2021, Bread of Life became an official congregation of the Lutheran Church Missouri Synod. It has been great fun.
Allen got involved an an African missionary project in Liberia through his friendship with Pastor Saie (who is from Liberia). Allen went with Peter and his wife Elizabeth to Liberia from mid October to mid November 2020. He helped install a water pump in a well and a windmill to generate electricity so they could continuously fill a water tank and not have to draw water from the well with buckets. He had a marvelous time. He came home tanned, and 20 pounds lighter.
After he came back, Allen had trouble with his asthma. He thought it was from all the chemicals being used to control the COVID virus. One night his coughing was so bad he was coughing up bloody mucus, so he went to the ER. He didn’t have COVID, or the flu or anything else bad in his lungs. They did chest x-rays and the ER doctor said he should get his heart checked out. He was scheduled for his routine 2 year stress test the following week so it was no big deal. But when he went for the stress test, they did an ultrasound before and would not allow him to do the stress test. They said his Aortic valve was stuck mostly shut. He went to see his cardiologist, who sent him to a surgeon. The next 2 months were filled with tests and more tests because during the COVID lock down, only people with emergencies were allowed surgeries, so even though his heart valve was progressively deteriorating, the doctors had to justify the surgery. Within those 2 months thing got progressively worse and worse. When the surgeon got in there, he discovered one of the leaflets of the valve was just flapping loose and actually had a hole in it. His Aorta was damaged from the infection as well, so the surgeon shortened the Aorta when they replaced the valve. This happened because sometime Allen had gotten an infection (we think diverticulitis) that traveled to his heart, attached to the valve and slowly deteriorated it. There was no infection at the time of the surgery (the surgeon checked). The surgery was an 8 hour surgery. The surgical crew were phenomenal. I got a call half way through saying he was doing very well. I got a call when they finished from the Physician’s Assistant and then the Surgeon. Allen would be unconscious for most of that evening and on a breathing tube, so we didn’t go up to visit. But as “luck would have it” (thank you Lord), Rebecca’s best friend since they were 2 years old (the daughter of my best friend), was working in the ER at the same hospital as a traveling nurse and she was able to visit him around 10pm, talk with him and then call us to tell us his color was good, he was alert and doing very well. He was supposed to be in the hospital from Monday through Friday, but they tried to move him from the Cardiac ICU to a regular room and the cleaning solutions in the regular room did not agree with him. He coughed the whole time. Not fun when you’ve had your chest opened up. So they sent him home a day early. He is doing fine now and is back up to full speed. We thank the Lord he wasn’t in Africa when this happened. We thank the Lord that it was discovered in time and that the surgeon, his staff, and our friend the traveling nurse (true blessings from God) were available. We are SO blessed, so thankful.
The End..... until next time. (Just kidding.)
“Therefore, since through God’s mercy we have this ministry, we do not lose heart. Rather, we have renounced secret and shameful ways: we do not use deception, nor do we distort the Word of God. On the contrary, by setting forth the truth plainly we commend ourselves to every man’s conscience in the sight of God. And even if our gospel is veiled, it is veiled to those who are perishing. The god of this age has blinded the minds of unbelievers, so that they cannot see the light of the gospel of the glory of Christ, who is the image of God. For we do not preach ourselves, but Jesus Christ as Lord and ourselves as your servants for Jesus sake. For God, who said, “let light shine out of darkness,” made his light shine in our hearts to give us the light of knowledge of the glory of God in the face of Christ.
“But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed....
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.”
II Corinthians 4:1-9,16