A Special Heart: An Amazing Journey of Hope, Love, and Courage in Raising a Special Child to Reach His Full Potential
166
A Special Heart: An Amazing Journey of Hope, Love, and Courage in Raising a Special Child to Reach His Full Potential
166eBook
Available on Compatible NOOK devices, the free NOOK App and in My Digital Library.
Related collections and offers
Overview
Product Details
| ISBN-13: | 9781491794470 |
|---|---|
| Publisher: | iUniverse, Incorporated |
| Publication date: | 05/27/2016 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 166 |
| File size: | 14 MB |
| Note: | This product may take a few minutes to download. |
About the Author
Read an Excerpt
A Special Heart
An Amazing Journey of Hope, Love, and Courage in Raising a Special Child to Reach His Full Potential
By Judy Zimlichman
iUniverse
Copyright © 2016 Judy ZimlichmanAll rights reserved.
ISBN: 978-1-4917-9446-3
CHAPTER 1
The Birth of Our Special Baby — the Early Years
After getting married and emigrating from Hungary in October 1971, I started a new life in Montreal, Quebec, Canada. By 1975 we were blessed with two daughters, a four-year-old and a three-year-old. After a difficult pregnancy, our son, Chaim, was born on May 8, 1976.
The obstetrician dismissed my complaints of terrible headaches and spotting during the pregnancy, which concerned me. This pregnancy somehow felt very different from my previous two. The doctor induced my labor two weeks after my due date, a labor that lasted twelve very long hours. Chaim was born malnourished and with some breathing difficulties. During the delivery he seemed to have been stuck in the birth canal and may have been deprived of oxygen. After his birth, he was taken to the neonatal intensive care unit (NICU). He was given intravenous antibiotics and put in an oxygen tent to help his breathing.
I remember waking up in my room a few hours after the delivery, but the baby was not in my room. When I asked the nurse where my baby was, she said she did not know for sure. I had a rush of adrenaline, got into a wheelchair, and wheeled myself into the nursery, but they said my baby was not there. My heart was pounding, and I felt something was very wrong. Then I went to the neonatal intensive care unit, where I found my baby. He looked scary.
He had an IV attached to his head, and he looked very scrawny. I couldn't speak; I just sat there and cried. The doctor was not sure what was wrong with my baby, but he said that Chaim needed antibiotics and some oxygen.
I couldn't believe how skinny my baby was, even though his stomach was bloated. His sucking reflex was very poor. He could not nurse, and feeding him even from a bottle was difficult. Feedings took a very long time because of his poor sucking reflex. He would drink very little, get tired, and fall asleep again. During his hospital stay, the doctors were not able to identify the cause of Chaim's difficulties.
1976 — (Chaim's Birth) First-Person Notes
The bright lights are blinding my eyes. For a second I am not sure where I am. Then reality hits me, and I come to the realization that I gave birth to my baby a few hours ago. My voice mirrors my fear — "Where is my baby? He should be in my room. Where did they take him?" No one is there to answer my questions. I realize it is about two o'clock in the morning Sunday. I get out of my bed, against the advice of the nurse — who is nowhere to be found now — and find a wheelchair. Feeling safer in a seated position, I wheel myself to the nursery, but I am told my baby is not there. "So where is my baby?" I ask. They tell me to look in the intensive care unit for newborns.
I enter a new world. Tiny little bodies are wrapped up within tiny little incubators, and they are attached to many tiny tubes.
Everything in that world is tiny and fragile, existing by the grace of God. I am having a hard time breathing, and I am too scared to ask which one is my baby. At last, a nurse sees that I am about to pass out, and she looks at my bracelet to find out my identity. She wheels me to the incubator where my baby is lying still. It is hard to describe my first impression of the baby. He is asleep. His head is swollen on one side where the intravenous line is inserted to provide hydration and antibiotics for him. His skin seems dry, and his bones are visible everywhere. On the other hand, his stomach is bloated, even though, according to the doctors, he is malnourished. He reminds me of the children of Africa who are starving. All I can do is sit and cry — and cry some more ...
Today my baby is two days old. I spoke to the doctors about his progress. They said that he is stable; however, he still needs some oxygen and antibiotics. It seems he was born after forty-three weeks of gestation, which caused the malnutrition and also the complications during the birth. A healthy, normal child is born after a maximum forty weeks of pregnancy. The doctor says, "I am not sure if he is going to make it." He is talking without any emotions. It shocks me how detached he seems. I wonder if he is able to imagine what a mother may feel at that moment. Does he realize that I feel he may be giving a death sentence to my baby? I cannot fathom what ramifications his words have for our future. I can only try to think and ask the doctors, "What can I do right now to help my baby survive?"
After twelve days in the NICU, he was discharged from the hospital. The bris (circumcision) took place when he was fourteen days old. For a healthy baby boy, the bris is done on the eighth day after his birth.
It took two whole months for Chaim to regain the weight he lost during the first three weeks of his life. He was a quiet and passive baby who ate every two hours for two and a half years. He had difficulty with his digestion. He vomited frequently and then had to be fed again. This was the only way for us to prevent him from losing weight. In the beginning I could not imagine how I could do this around the clock and also take care of the rest of the family's needs. However, I later learned to go on with little sleep, for about three years. There were times when I would just sit down and cry from exhaustion, and I asked Hashem to please help me go on.
When people heard that we had a new baby, and he was not well, their mazel tov was strained and quiet. They felt uncomfortable asking about the baby's difficulties. The above attitude made me wonder if the birth of a handicapped baby was seen by people as a blessing or a tragedy. People said some hurtful things: "God must be punishing you for something you have done"; "There must be something wrong with your family's genes." Another person said, "God gave you a precious gift to nurture and love. You should feel honored that you were chosen to be the parents of such a pure soul." At that time I was not sure how I felt, except that I needed to focus on one day at a time.
It was physically exhausting to provide Chaim with the constant care he needed and mentally draining to continuously worry about his health. He was hospitalized frequently with various infections and very high fevers. There were times when he needed to be in the hospital for a week or two. I never left him alone. One time the doctors were unable to get his fever under control. Chaim did not want to drink, and he was barely moving. We were worried about complications such as meningitis, because of high fever and dehydration. The doctors told us just to leave him alone and "let nature take its course." No one could give us reassurance that our son would survive!
As I sat by his bedside and said tehillim around the clock, I hoped that he would gradually improve. Watching his labored breathing was pure torture. I could not imagine letting a life slip away without even trying to do something for him. I cried and slept for a few minutes. Then I would wake suddenly and touch his body to make sure that he was still breathing. I continued this heartbreaking vigil for many more days.
Finally we could not just stand by any longer without doing anything. So we asked for guidance from the toshe rebbe, Rabbi Meshulam Lowy, who told us to try to feed him watermelon juice with a medicine dropper — one drop every minute and then increase it very slowly.
Miraculously, Friday evening he did open his mouth and was willing to swallow the drop of juice. By midnight his fever started to go down; within a day, he was fine and was allowed to go home.
Thus continued the fervent hope for small miracles, frequent visits to doctors, and our constant vigilance to Chaim's health.
These times were very trying because of Chaim's increasing care needs, while at the same time struggling to meet the needs of the rest of the family. Staying up through the night and caring for Chaim during the day felt like an endless task. My own family lived overseas, so they could not help me. My husband's family worked very long hours in their restaurant, so they were not able to help me either. My husband also worked long hours.
When Chaim needed to be hospitalized, I stayed with him there around the clock. My husband was left on his own to make arrangements for our two other small children and also to manage things at home. Once Chaim came home from the hospital, I was left on my own to take care of the children and the house. I felt that Hashem helped me every moment to make it through each day.
By the time Chaim was eighteen months old, we realized he was not developing normally. He was not yet walking, and he showed signs of fine and gross motor difficulties. We took him to a specialist to have a developmental evaluation. He was diagnosed with Williams syndrome (WS), which is recognized as a combination of physical and intellectual characteristics these children have.
The accompanying health concerns can range from mild to severe, such as heart problems, hypercalcaemia, poor mouth control, poor gross and fine motor coordination, "lazy eyes," hypercaustic problems, and social communication difficulties.
We thanked Hashem that Chaim had a mild form of WS, which meant more hope for his development.
It took six months to get an appointment with a specialist who was familiar with WS. He confirmed the diagnosis and told us our son would always be a "vegetable." He suggested we place him in an institution and forget about him and have other children. Hearing his words made us feel like he was giving up on our son. It felt as if lightning had hit us! This child did not even have a chance to get help from therapists yet, and they were already condemning him as "hopeless"?
Following Chaim's diagnosis, I spent hours in medical libraries researching information about Williams syndrome. At that time the research identified only twenty-seven children in North America with this syndrome. Because English is not my mother tongue, it was that much more of a challenge to become familiar with the language used in the medical books and journals. This was also very time consuming. However, it was important to me. So I hired a babysitter once a week, to allow myself the free time. Starting around this time in my life, I developed a new coping skill in difficult situations: the more information I learned about the relevant subject, the more I felt I could understand it and maybe find some solutions. This approach also gave some sense of control at a time when my whole life seemed to have turned upside down.
My thoughts were focusing on the questions of how to parent a child with special needs and how to nurture my other two small children. It was difficult to meet Chaim's seemingly endless needs. His survival had to be my priority.
My husband felt that Chaim would grow out of whatever "the problem" was. He was in denial, disbelief, and shock. He could not fathom that this child would remain handicapped forever. He had little contact with Chaim because he did not understand how to relate to him. Chaim could not understand much at that time, and he needed constant care. By the time my husband returned home from work, the children were in bed. He spent time with the children mainly on the weekends.
There was a sense of embarrassment in some family members that a handicapped child was born into the family. Some thought it was a punishment from Hashem for some sin committed! This nearly tore my heart out. It took all my effort just to make it through each day. When I took Chaim to shul, some of the children made fun of him, which made him feel very sad. Adults stared at him or ignored him. This was heartbreaking for us to witness. However, during those years, children and adults were not exposed to or used to seeing handicapped children within the community. They did not understand what they were seeing and were worried that it may be contagious. The community was not sensitized to the needs of special children, and during those years, integration was not a common idea in our society.
When my friends and their children saw Chaim on the street or in the park and realized that he looked different, they were uncomfortable and did not know what to say. This hurt me very much. It was very isolating not to be able to share my daily challenges and struggles with anyone who could understand.
There were no support groups or networking opportunities for parents with special-needs children at that time. It took me a long time to be able to bring up the subject and talk openly with my friends about Chaim's difficulties.
During these challenging times, when Chaim was two and a half years old, we had a new baby girl. She was a very easygoing and happy baby. She gave us much happiness and also provided us with more strength to deal with the daily challenges of Chaim's needs. Our two other daughters were very excited about the new baby in our family.
It was a different experience for them this time; they were older, and this new baby was healthy, more responsive, interactive, and a lot of fun. They were able to play with her, and she smiled every time they picked her up from her crib. I was also much more relaxed following the new baby's birth, seeing that she was healthy.
The positive aspects of our journey with Chaim were the tremendous emotional, intellectual, and spiritual growth we all experienced through living with Chaim and through our constant seeking and searching for solutions. We were committed to give Chaim the best possible quality of life and a chance to enable him to achieve his maximum potential. The contact I made with the many professionals was helpful in providing me with more information, support, and resources.
We took Chaim to see a genetic specialist at a hospital out of town when he was two to three years old. The doctor spent a lot of time predicting future problems, even though she had not seen any children with Williams syndrome over the age of thirteen. She predicted that he would never be able to take care of himself physically and that he would not be able to talk, walk, or have a normal life. This was one more of those times when it took all our strength just to go on and have hope for Chaim's future.
In my search for more answers, I took Chaim to New York to see a cardiologist. Chaim had a heart murmur, which I felt may have been affecting his development at that time. They did many very painful and invasive tests. Chaim became very wary of doctors and medical procedures from that time on.
Witnessing this was difficult for me. I did not tell his heart doctor in Montreal that we consulted with another cardiologist. The New York doctor agreed with the diagnosis and treatment plan of the cardiologist in Montreal.
To my surprise, at my next appointment with the Montreal cardiologist, he told me he played golf frequently with the doctor I saw in New York. He also told me that they discussed Chaim's situation! I was very embarrassed. But it made me realize there is no purpose in running to out-of-town doctors, because Montreal had excellent pediatric specialists.
My challenge was to accept what was not changeable and move on with helping Chaim with what was available: physical and occupational therapy, socialization, nutrition, and special education.
A few months later, I met an exceptional doctor at the emergency room of a children's hospital. This was one of our many visits with Chaim because of his fevers and infections. Chaim was very frightened of doctors in white lab coats. The minute he saw one, he was already weeping. When this doctor arrived to examine Chaim, he was wearing no white lab coat, and he pulled out a puppet from his pocket and started playing with Chaim. They became instant friends, which lasted for many years. This doctor continued following Chaim, monitored his progress every few years, and gave me useful guidance based on his observations. He was very helpful and had a good understanding of Chaim's abilities and disabilities.
Everything he said remains true today. He explained that children like Chaim may learn things on a more superficial level, but they are unable to develop an in-depth logical understanding of a subject. He gave us hope and support and pointed us in the right direction, helping us to connect to the therapeutic programs that would benefit Chaim.
From a very young age, Chaim attended various specialized therapeutic programs to help improve his skills. His fine motor skills were poor. This affected his hands and his ability to draw and cut. One of his occupational therapists spent eight to nine months working with Chaim, to help him learn the fine motor skills required to draw a circle or cut with scissors.
The first time I noticed that Chaim mastered holding and using a pair of scissors was when I saw him cutting our living room curtain into shreds! Of course I was delighted that he finally was able to get the hang of using scissors, but my curtain was ruined. Talk about mixed feelings!
(Continues...)
Excerpted from A Special Heart by Judy Zimlichman. Copyright © 2016 Judy Zimlichman. Excerpted by permission of iUniverse.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Acknowledgments, vii,Introduction, ix,
The Birth of Our Special Baby — the Early Years, 1,
JASE Establishes Jewish Special Education Classes in Montreal, 19,
Summer Camps and the Yachad Trips, 25,
An Extraordinary Bar Mitzvah and the Teen Years, 29,
Chaim's Vocational Journey, 36,
Chaim's Personality and His Social Life, 40,
Moving to a Special Group Home, 49,
Songs from a Special Heart — Chaim's CD, 57,
Observations from the Social Worker's Perspective, 73,
My Personal Trials and Tribulations, 83,
Epilogue, 88,
Parents' Code of Rights, 94,
Glossary of Jewish Words, 106,
Photo Gallery, 109-140,
Addendum 1, 141,
Addendum II, 151,