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from Spring 97 issue

When a Child Dies 

by Lindie Hunt and Elaine St. Marie

Editor's Note: It is impossible to imagine a loss greater than the loss of a child. Many parents of children with severe disabilities live with the reality that their child may not live into adulthood. We might assume that they are somehow better prepared to deal with the death of their child when it occurs. Lindie Hunt and Elaine St. Marie are two parents who have experienced this ultimate tragedy. I deeply appreciate their willingness to share their experiences with us and to speak openly of their grief and loss. I hope that these stories will help other parents who face this ordeal and give insight to the professionals who reach out to support these families in their time of need. Both Lindie and Elaine are willing to be contacted by other families who need support when a child dies.

KRISTEN

It's been five years since the death of my daughter, Kristen. If someone were to ask me if I'm OK with her death now my answer would have to be, "No." I don't think a parent can be OK with the fact that they have lost a child. But if asked if I have happiness and peace in my life I would easily answer, "Yes." I have been blessed with so much since my daughter's death---none of it replaces her or my relationship with her, but I have found new people and new relationships that bring so much to my life.

For parents facing the possible death of their own child I have the utmost empathy. The waiting and wondering how it will be, how I will feel, if I will survive is very hard. I often heard that I, of all people, should have been prepared for her death. After all I lived with my child's terminal diagnosis for over five years. There is no way to really be prepared. I did visit a funeral home a few years before she died. I did read countless books about the grieving process. I did the things I thought one should do to be prepared. In the end, her death was as much a shock to me as anyone. How did it happen so quickly? Why didn't I see it coming? How do I go on?

When you lose a child you lose so much more that you may not be prepared to lose. I lost my daily support from the nurses that had come to my home to help care for Kristen. I lost my identity as a mom who cared for a child with special needs. I eventually lost my connections to other moms who still cared for their children. After she died, I was left with memories, pictures, and a hole in my heart. Over the years the hole in my heart has healed leaving only a tender scar. One that aches from time to time---especially on her birthday and the anniversary of her death. I still cry but more often I find myself thinking of her and smiling as I remember a love and bond that was beyond description.

MICHAEL

Michael was born with severe brain damage which resulted in cortical vision impairment, cerebral palsy, and many health problems. He was tortured by the treatments he had to undergo; we were tortured by the stress of watching his suffering, the demands of his care, and dealing with schools and professionals.

We loved him dearly, but as I went to the funeral for various friends' children, I often wondered why he was still with us. I was sometimes so exhausted and/or overwhelmed. I almost wished for it to be over. I thought I had prepared myself for the possibility, that he would die. And then that call came when he was almost 7 years old, a page from an attendant. Michael had been having a great day even though he had a poor night the night before, so I didn't expect a real problem. In fact, I remember telling the attendant to have EMS transport him to the hospital and we would meet them as quickly as we could get there. The EMS technician got on the phone and said that he was not going to make it. I didn't know what to say.

When we arrived at the attendant's apartment, there was this beautiful white lace sheet on the floor. I remember thinking he couldn't be under that because it was so small ... his tiny, tortured body no longer. I thought he had been limp in the past...he was so much limper now. My husband and I took turns holding him, cleaning him up, talking to him. The doctor was able to come to be with us, a rare occurrence we later found out. Then came the planning for the funeral. We chose to make it a celebration of his life.

I don't think you can ever really be prepared for death. It was harder than I expected; I've grieved more than I expected. Just as there are only some people we can really talk to about our children while they are alive, it seems that there are only a few people we can talk to about them once they have died. Usually another parent who has gone through the experience. There are some support groups but the one I had experience with was primarily for people who had "normal, healthy" children who became ill; not one who never talked, walked, or laughed. For me, it wasn't the right group.

Where did I fit in? How would I structure my life? I was forever tied to the world of disabilities/medical needs by my work. So I sought solace in helping
others as much as possible. My friends who have children with special needs have been wonderful and accept me as one of them still. Now almost 2 years later, I still cry more easily than I wish when I think of Michael. The tears stream down my face now.

Because we recently adopted a "normal, healthy" eleven year old boy, I am adjusting to mild guilt feelings about "forsaking" Michael. This week, I decided to think of Michael as someone who had grown up and moved out of our home because it wasn't the right place for him to be anymore. So instead of sadness or guilt, I am choosing to be more neutral, that his death was a natural part of life. And I believe it strongly.

I just wish the tears would stop. I don't know if they ever will. They don't come quite as often or quite as easily. I have my pictures and my memories. I was blessed by Michael's life and can't imagine not having had him.

Lindie Hunt
1706 Oakwood Drive
Austin, Texas 78753

Elaine St. Marie
2501 Carlow Dr.
Austin, Tx 78745


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from Spring 97 issue