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An unexpected journey.

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The words widow, widower, and orphan all serve to inform people that there has been the loss of a spouse or of parents. These words all provide information about what has happened in a person's life. There is no word in the English language to describe a parent who has lost one or more children. Perhaps no word could ever describe the pain of a parent mourning the loss of a child. It is simply ineffable and unfathomable.

My very strong and long-time dream of having a large family turned into the worst nightmare I ever could have imagined. Suspecting there was something seriously wrong with our first baby, Jonathan, I took him to multiple doctors before one would listen to me. I was in shock and in a total state of disbelief when we were given the diagnosis of Canavan Disease at nine months. We were told that he would live 2-3 years. Moreover, when I was told there was no prenatal testing for the disease, a feeling of hopelessness enveloped my entire existence. The impending sense of doom I had felt since I first suspected something was not right with Jonathan was darker and bigger than ever. After he was diagnosed, it was almost as if I were looking at him for the first time. I realized later that I was looking at him for the first time in a totally new way: that of a mother looking at her dying baby.

Several months later, I became pregnant again. As we did not have prenatal testing available, almost every waking moment was spent obsessing about the one major "what if" that was facing me. I looked for every possible difference between my pregnancy with Jonathan and this pregnancy. After Amy was born, I immediately began comparing her early days to what I remembered of Jonathan's. She was alert and was able to breastfeed, two differences when compared to Jonathan. These differences helped me to feel hopeful. However, when she was four weeks old, Amy showed me that she, too, had Canavan Disease. A neurological sign that Jonathan had not exhibited at that age was the telling fact. Lightning had struck again.

Canavan Disease, a genetic disease more prevalent in people of Ashkenazi Jewish descent, is a degenerative neurological disease of the white matter of the brain. It is a recessive disease, in which each parent is a carrier. There is a 25% chance with each pregnancy of conceiving an affected baby. Although the specific enzyme was unknown at the time, each affected baby is born with a missing enzyme, aspartoacylase. As a result, a substance called N-acetyl-aspartic acid (NAA) accumulates in the brain and other organs. This results in demyelination, which causes deterioration of all skills and eventually leads to an early death.

Was I being punished for something by not being "allowed" to fulfill my dream of having children? As I heaved myself into the depths of sorrow, I encountered a sense of hopelessness and desperation like none I had ever experienced. Now, I would watch not only one, but two children, die.

Though my husband, Danny, and I had been looking into the possibility of adoption even before Amy's birth, it did not look promising. The agencies were turned off by our challenge, one even telling us that we could not possibly be suitable parents until Jonathan died and we went through the grieving process. Several months after Amy was born, through word of mouth, we were able to privately adopt our daughter, Stephanie. Three years later, we privately adopted our daughter, Michelle. Two and a half years after we adopted Michelle, believing we finally had prenatal testing, I gave birth to Joshua, a healthy baby boy. Although we were lucky, that prenatal test turned out to be unreliable. Several carrier couples subsequently gave birth to affected children, even though they were told their babies were free of the disease.

Over time, Jonathan and Amy were instrumental in furthering medical research, as it was their blood, urine, and skin samples which enabled researchers to discover the missing enzyme in Canavan Disease. Their fragile lives and the fragile lives of a number of their Canavan friends set into motion the continued research to find the defective gene, ultimately resulting in reliable DNA testing. In 1997, several years after the Canavan gene was isolated, it was patented by Miami Children's Hospital. Instead of using the gene for the public good, the hospital limited testing and charged testing royalties to profit from the information which would spare families from tragedy, much to our dismay. Litigation partially rectified that travesty.

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Even though I felt so much joy from our three healthy children, the sadness in my heart did not go away. It did not matter if I had one healthy baby or one hundred. Losing two children has been a traumatic injury, wounding me with immeasurable pain and sadness. Sometimes, I do not even know how I survived this pain that had rooted itself so deeply in my inner self, in my spirit, in my soul. It is a pain that I would not wish upon my worst enemy. Jonathan's and Amy's short lives and deaths still have a profound effect on my life. In working through my grief, though, I started to accept the fact that losing two children was a major part of my identity. This defined who I was and always will be as a mother, as I had never experienced a normal motherhood.

Functioning physically at a newborn level and cognitively at a three month level, Jonathan and Amy were tube-fed and had no head control, visual tracking skills, or voluntary movements. They never talked, crawled, or walked. But, they gave us more smiles than we ever imagined. They showed us joy and happiness that we never thought possible. Whenever they responded to a crazy noise or a sudden movement, their contagious smiles infected anyone who was lucky enough to savor the moment. This helped give us the strength we needed to live this challenge that was set before us.

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One of the most difficult decisions we made was to place Jonathan and Amy in a pediatric skilled nursing facility. We quickly saw that Misericordia Home in Chicago was all about love, devotion, and assuring lives of dignity for 120 severely and profoundly disabled infants and children. It provided much more than care for these special children. Misericordia provided a safe haven for the families who chose to make it a prominent part of their lives. This was a place where we could go and feel the same warmth that radiated out to all of the children. This was a place where we could be reassured over and over again that our decision to accept Misericordia's care for Jonathan and Amy was the right decision for us. This was a place where we were completely and entirely understood and accepted. We, as parents, felt embraced and loved by the staff, who always had time to talk to us, or simply just to listen.

Jonathan and Amy taught me that we cannot always find answers to our questions. Only recently have I come to the realization that there are no answers to the questions "Why?" "What did I do to deserve this?" and "Is this a punishment for something I have done?" Because of the limitations of human comprehension, I may or may not find complete answers to my questions in my lifetime. What I can do, though, is fill my life with the lessons that Jonathan and Amy taught me so their spirits will continue to soar.

Living well beyond their life expectancies, Jonathan and Amy were eleven and sixteen, respectively, when they died. They taught me many lessons about unconditional love, compassion, acceptance of things over which I have no control, and living in the moment. They taught me about inner strength, accepting help when needed, and giving to others without expecting anything in return. Though they have been gone for over a decade, I feel their presence more than ever. They are a part of me. I take them with me wherever I go.

Having and then losing Jonathan and Amy affected so many facets of my life: my identity, my marriage, my interactions with others, my faith, and the way in which I look at life. As I think about my purpose in life, I am filled with wonder. Have I had these experiences because I am supposed to be an example for others, to show that one can continue to go on despite multiple adversities? Many of my friends are "blown away" by all that I have been handed and by how positive I am after all these years. I am not writing these words to pat myself on the back. I am writing these words to show that life can still be lived, even when there has been one major challenge after another. My writing is a living legacy to Jonathan and Amy. Their smiles and laughs, the ways in which they touched so many people, the tears they evoked from others, the research they helped make possible--it is all in the story of their short lives.

Though it has taken me a very long time, I now look at my life as a very colorful one. My life is rich with experiences I never dreamed I would have. It is filled with lessons I never wanted or thought I would need. I am learning to accept and embrace uncertainty. I am convinced that my life was not meant to be an ordinary one. My journey has been filled with the unexpected. It is what it is. And it is all okay.

Author's note: I a in the process of writing a book. My hope is that besides sharing my pain of going through this long and weary journey, it will show others they are not alone. Feeling and sharing one's grief is not an easy task, but it is absolutely necessary if one wants to live a life that is as full as possible. My grief that resulted from the loss of my two children will always define who I am as a person, especially as a mother. I have learned that sharing some of one's sorrow with others helps to make the huge monster a bit smaller. It helps one to face a tragedy that at first seems simply unfathomable. By writing a book and sharing my story, I would like to be able to instill hopefulness in others who are in similar situations.

For more information on Deborah's book plans (and to get involved with its publication efforts) contact her at littlelefty1@sbcglobal.net.
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Title Annotation:GENETIC DNA DISORDERS
Author:Greenberg, Deborah P.
Publication:The Exceptional Parent
Article Type:Essay
Geographic Code:1USA
Date:Aug 1, 2010
Words:1792
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