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Busch, Susan

PARENTING A CHILD WITH DELETION 22
A Medical Mother’s Memoir

Query
This memoir reflects on raising a son with a deletion of chromosome 22. This condition is thought to be as common as Downs Syndrome (1:3000), although little has been written about Deletion because the test to identify the deletion was just developed in 1993. Children with this deletion often have many serious medical problems as infants. As they grow, they display learning and behavioral difficulties in childhood, and up to 50% develop psychiatric illnesses in late adolescence.

These reflections are informed by my training as a nurse and lecturer, yet are most informed by my role as a mother. The manuscript is 65,000 words in length.

When my son was in his early 20’s, during a psychotic episode, he set himself on fire. He spent months in a burn unit hovering between life and death. This burn story, harrowing as it was, was only a part of the much larger story of his life. Many of the struggles that I describe are common to families raising children with this deletion.

Narrative Outline

Introduction
This section introduces the book, tells how it came to be written and tells about the Deletion of Chromosome 22.

Chapter 1 Burn Shock
This chapter opens with the discovery of my twenty-two year old son in our kitchen severely burned. It then describes the ambulance ride, the waiting, and meeting the doctor who would be caring for him. The doctor hadn’t heard about the Deletion of Chromosome 22. We couldn’t explain the deletion or tell the story of our son’s life to the doctor, because he needed to be caring for our son. So then the author turns to the reader to tell them the story—introducing the rest of the book.

Chapter 2 Inauspicious Beginnings
This chapter begins with the discovery that I was still pregnant after a presumed miscarriage. It then continues with the angst and ambivalence of pregnancy. It then describes the delivery and learning the news that my newborn baby had been sent to the neonatal ICU because of heart problems. It also explores religious questions that were going through my mind at that time of crisis.

Chapter 3 So many questions
This chapter describes the many problems we had after we brought him home from the hospital; the difficulties feeding him, his funny cry, the failure to grow, the constipation, the frequent infections and hospitalizations. It discusses the idea of diagnosis and its affect on a person. There is also a section addressing hospitalization from the viewpoint of a nurse, who has now become a patient with her baby son.

Chapter 4 Turning Blue
When my son was 8 months old, he stopped breathing one morning as I nursed him. I describe calling the ambulance, my clumsy attempts at CPR and his gasping for breath again. In this chapter I tell stories of things that happened during that scary uncertain time with a baby who frequently stopped breathing and no one knew why.

Chapter 5 Dispensing with Medical Advice
In the previous chapter, the last time my son stopped breathing, they wanted to admit him and do all sorts of tests. We were burned out on hospitals and refused admission. This chapter further explores the other times doctors wanted to do tests and procedures. Often the proposed interventions seemed worse than the problem they were supposed to help. It discusses the ambivalence, guilt, fear and occasional anger that accompanies not always following the doctors’ orders.

Chapter 6 Childhood Dreams
After my son grew to be three years old, he improved health-wise and had a wonderful time playing and wrestling with his brothers. Those years were filled with hope and the belief that the worst was behind. There are stories of friends, imaginary friends, games, love, laughter, hugs and pets.

Chapter 7 School Daze
Children with a deletion of chromosome 22 have unusual learning disabilities. This chapter tells the story of the school system sending him to a different school and the fight to get him back into his home school district and mainstreamed. It tells of IEP meetings and the sorrow of having a child who struggles. It also describes my husband’s and my denial and the high expectations we kept putting on Mike. It relates the desperation in searching for something…anything… that will help your child.

Chapter 8 Not alone anymore
When he was 13 years old, he was diagnosed with VCFS (another name for the deletion of Chromosome 22). Finally understanding and having a name for all Mike’s problems so far in his life was like turning on a light after crawling around in a closet for years. That was my experience. My husband was in denial. He kept hoping that Mike would be normal. This chapter covers our first VCFS convention and all the divorced parents we met. It then explores some of the stresses on a marriage of raising a child with a disability.

Chapter 9 Genetics some thoughts
This brief chapter explores some of my thoughts as a mother of a child with a genetic disability regarding some bioethical questions regarding the question of reflex abortion of fetuses with genetic abnormalities since we can now test for it in utero. Sometimes I have put this chapter at the end of the book, sometimes deleted it entirely thinking it didn’t belong in this book. But in the end I left it there because I like my opinions on this matter.
Chapter 10 Adolescent Growing Pains
Adolescence was difficult. There was a lot of peer pressure. Most of the time the other students were kind to Mike, but other times they took advantage of him and made fun of him. This chapter describes some of the unique problems of being mainstreamed in high school with a developmental disability. Until high school mainstreaming was the best way to educate him, but mainstreaming in high school taught him things we rather he didn’t learn.

Chapter 11 Psychiatric Care
A number of individuals with a deletion of chromosome 22 develop psychiatric disorders in adolescence because they lack important enzymes that break down key neurotransmitters in their brains. Mike happened to be one of the unlucky ones. This chapter describes the difficulties in finding good psychiatric care in America today. It tells of the stigma to mental illness both in the general society and also internalized inside of many of us that it prevents many from seeking care. In this chapter I tell of his drug use and suicide attempt in high school and my frustrations in getting good care for him.

Chapter 12 College
All of Mike’s friends were leaving home and going to college. He wanted to go also, but he lacked the intellectual abilities to do even basic college courses. This chapter explores some post-secondary options that we tried and the failures of them and our frustrations with this entire period of his life. He had a psychotic break after a campus job and dorm living experiment. After that it took some time to get his life back on track.

Chapter 13 Another broken tooth
One of the many problems with the deletion is that the teeth are bad. He was finally at another post-secondary option in Chicago which started out so hopefully, but then one day his tooth broke. He called us to tell us, but we didn’t worry too much because that had happened before. It was more stressful for him than we thought because within weeks he had spiraled into a severe depression and we brought him home from ‘college.’

Chapter 14 Frozen Darkness
The psychiatrist had a difficult time finding a good medication to stabilize him and bring him back to normal functioning. This chapter discusses all the things we tried to help him get better. It again returns to the theme of the difficulty and stigma of mental illness and how much is lacking in mental health care in the USA today. Caring for a son with a mental illness made me crazy.

Chapter 15 The Cruise from Hell
For some strange reason, we thought that bringing Mike on a religious retreat cruise would be beneficial for him in this depressed state. We were thinking a change of scenery, the sun, all the people praying might be helpful for him. Once he got on the boat though, he became paranoid psychotic. He kept wanting to jump off the side of the cruise ship.

Chapter 16 St Patrick’s Day
You never know how a day is going to turn out. His psychiatrist had started him on an antidepressant a few weeks earlier and he was starting to turn the corner. I brought him to the Cleveland International Film festival to watch an Irish film and we had lunch and watched all the kids playing hooky from school. It was a good day. When I had to go on an errand, and Mike didn’t want to come, I thought it was a good thing. I returned from the errand to find him burned. This chapter picks up where the introductory chapter left off.

Chapter 17 Sitting in Sorrow
I sat at his bedside those first few days and wept. It wasn’t just tears of sorrow, but of grief , fear, and also guilt at not being able to prevent Mike from this suicide attempt. Sorrow had been a familiar companion in his life so far, but now it seemed that it had come to stay permanently. Sitting at his bedside I also understood that sorrow is one thing that unites us all as human beings. There may be different circumstances and occasions, but sorrow is something we all share living in this world.

Chapter 18 Hospital life
Mike was hospitalized for almost 3 months. Even the most horrendous circumstances become routine with time. This chapter describes what it is like for families and friends of loved ones who are hospitalized for months. There is a unique hospital sub-culture that families of the severely ill share. ¬¬¬¬¬¬ They alone know what the other families are going through.

Chapter 19 Nurse Mother
It is said that nurses make the worst patients. Nurse mothers top the list. I couldn’t hide the fact that I was a nurse from the staff taking care of Mikey. I was aware of everything and understood everything that was going on. Some of the nurses may have felt threatened by this. After Mike had been in the burn unit for a few weeks, he started taking a turn for the worse. I would tell the nurses and ask them to call the surgeon and they would only reassure me and tell me to “just be a mom and not a nurse.” That was even the surgeon’s message to me. Then Mike crashed and almost died. It was hard because I saw it happening and no one listened to me.

Chapter 20 Discussions with God
Mike was hovering between life and death could die at any moment. At the time family and friends were saying that it might be better if he just died. His life had been difficult enough before the burn. What would his life be like if he recovered from the burn. He wouldn’t just have a developmental disability and psychiatric illness. He would now be disfigured with physical disabilities. The surgeon wasn’t sure that Mike would ever be able to live off the respirator. I went for a walk in the spring woods and had a long talk with God. When I searched my heart I realized that even in this dire situation with such poor prospects, I still couldn’t let him go. Logically that would have been the best choice, but the heart is not a logical organ.

Chapter 21 His Twenty-second birthday
The burn team that came into his room everyday to change all his burn dressings sang “Happy Birthday” to him on his birthday and I cried. Mike was still on the respirator, still very sedated, and not even aware that it was his birthday. It was one sad gruesome birthday party. I sat and remembered all the birthdays in his past and his friends that had come, and the games we had played. Some friends from our neighborhood that he grew up with came and visited. I tried to discourage their visit, thinking that Mike wouldn’t even be aware that they were there. They came anyway and took his hands and talked about all the stories they remembered growing up. I cried then also. Shortly after that visit, he started to turn a corner and get better.

Chapter 22 ICU psychosis
ICU psychosis is a well known phenomenon where patients who are in ICUs for a long period of time can become psychotic because they never have a good night’s sleep. When Mike was finally extubated, he was very restless and had problems breathing. I spent that night in the hospital with him just to calm him down and keep him from becoming too agitated. Every time he started to doze off the nurses did something to wake him up—including a bowel irrigation at 4:00 am. I became psychotic.

Chapter 23 The road back
He started to get better. This chapter describes how little by little he started returning to the land of the living. Initially he couldn’t move anything or eat. Sitting in a chair was a huge step. He was in his right mind and told everyone how much he loved them and didn’t know how much he was loved. His friends from high school would visit him in his room and bring him videos, and music, and one of his friends whose father had died, brought in his father’s old laptop for him to use.

Chapter 24 Forgiveness
There was another health crisis for Mike on a weekend with the same surgeon who had ignored my concerns before he crashed early in the burn. He ignored my concerns again! This time the surgeon and I had a yelling fest. I fired him. He said he didn’t want to take care of Mike either. The problem was that this surgeon was part of a group and firing him wasn’t really an option. A few days later we sat down and talked it over and forgave each other. In the chapter I discuss forgiveness in the context of all we had been through. Where do you draw the line on forgiveness? I had certainly made enough mistakes in the care of Mike. I needed to forgive myself. I also needed to forgive God for creating Mike with a missing piece of chromosome

Chapter 25 Mummy in a Wheelchair
It was May. He still needed to hospitalized and still needed surgeries, but he could sit up in a wheelchair. On the days that the weather was nice I would get him bundled up in his wheelchair and take him all over Downtown Akron just to be out of the hospital. Not sure if it was for Mike’s benefit or my own.

Chapter 26 Sisyphus
This chapter is named after the Greek myth of Sisyphus who was condemned to a hell of rolling a stone up a hill, when he almost got to the top, the stone would roll back down again. Mike finally came home from the hospital in June. The burn team had wanted to send him to a rehab facility, but I wanted him home. My husband and I were both nurses and we knew we could care for him. What we didn’t quite imagine was how time consuming and relentless the care was. We couldn’t go home after an 8 hour shift. The work was relentless and never done.

Chapter 27 Waiting
All the time while Mike was in the hospital and then the early months home, I couldn’t work because it was impossible to get all the paperwork and approvals in place for him to get care in the home and transportation to and from rehab. We were also waiting for Mike’s hand to start working and waiting for him to get better. This chapter I might be whining a little too much.

Chapter 28 Obsession
With the Deletion of Chromosome 22, many of those affected are also missing parathyroid hormone. I wanted Mike to have it for many reasons but no one wanted to prescribe it because it was so expensive. I went from endocrinologist to endocrinologist without success until I discovered a study at NIH. Mike was accepted into the study. I tell of NIH and the visits and adventures there.

Chapter 29 Junkyard Dog
Close to a year and half after the burn, Mike dislocated his shoulder and tore his rotator cuff. I took him to an orthopedic surgeon who knew Mike from high school. His son and Mike had been on the same football team. When this doctor saw Mike with his scars, missing ears, stooped posture and gimpy right hand he kidded Mike and called him a ‘junkyard dog’ Mike laughed and took it as a compliment. He had been through a lot and had the scars to show for it. I also relate that I too had become junkyard dog by proxy. I no longer cared about how things looked. Things are what they are.
This chapter is being published in April’s edition of Recovering the Self Journal. I don’t know the issue and page numbers because they haven’t sent them to me yet.

Chapter 30 New Battlegrounds
Life has settled into a new normal. Mike has a job and is doing well, but now he struggles with alcohol and smoking (which is a very bad problem because of his lungs damaged by the burn.) This book and chapter close with Mike coming home from being out with his friends so drunk he cannot stand up. We call an ambulance because we are afraid of alcohol poisoning. The same paramedic arrives who first transported him when he was a baby, then during adolescence, then with the burn, and now dangerously intoxicated. I smile sheepishly and say hi. He smiles back and asks how we have been doing. I realize in all these years I never learned his name. I grab a jacket, my purse, and a book, prepared for another stay in an emergency room.


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