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Article of Interest - Fragile X

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Bridges4Kids LogoGrief Can be a Gift
by Sally Nantais, The News-Herald, August 1, 2004
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With the dog days of summer upon us, I was sitting at this silly computer trying to find the direction for a column. My mind wandered far from summer to a personal experience.

It's a unique experience that only a parent of a child with a disability can understand: the grief that one experiences with a diagnosis of a disability.

These thoughts were brought on by the images of Nancy Reagan having to be coaxed from her husband's coffin, so weary and grief-stricken. It's a vision some of us won't quickly forget.

It intensified with a column I read for the Grosse Pointe News by close friends Mary Beth Langan and Ted Coutilish on "D-Day," which had nothing to do with World War II. "D-Day" for them was "Diagnosis Day."

Having a child with a disability is not something one ordinarily chooses. The beginning, the diagnosis stage, is one of the most difficult.

We all have dreams for our children that may be shattered with a diagnosis of a disability, be it physical or developmental.

With the loss of those dreams comes grief and all the emotions that go with it: denial, fear, guilt, blame, anger, sorrow and acceptance. Grief doesn't exclude things we can't see or touch.

Grief over our shattered dreams can be as intense as that for the death of a loved one.

Denial came first. "They can't be right, look at what he can do, at how bright he is?" Why do they measure our children on what they can't do and not by what they are capable of doing?

Fear of the unknown is always present. As a parent, you want to know as much as possible and have all the answers. Unfortunately, you quickly discover there are no answers for the important questions.

Will my child have friends? Will my child be happy? Will my child be able to live independently when he's older? What will happen to my child when I'm no longer able to care for him?

Guilt and blame quickly followed, which for me was an easy trap to fall into. After all, my son's disability, Fragile X syndrome, is genetic.

Prior to his diagnosis (he was diagnosed when he was 4) I had no idea that I had a 50/50 chance of passing a developmental disability to my child.

Anger became apparent when I questioned why this happened to me. I wondered why I had to be the one to pass it on and not one of my sisters? It didn't seem fair, but is life ever fair?

At times, my anger has been misdirected. My son has a condition that he was born with and he will die with.

At least that's how one insurance company explained a denial of service to a parent of a child with Fragile X syndrome. At this time, it's not curable and it's not terminal.

There's no Make A Wish or Rainbow Connection for my child or other children like him. Sometimes it seems as though no one cares about the quality of his life, or others like him.

Sorrow was never as intense as it was in the beginning. It's difficult to explain the depth of your sorrow: It was, and at times still is, immeasurable.

Surprisingly, sorrow didn't occur immediately, but happened a little later when hearing the words "mentally retarded" used to describe my son's disability.

Grief may never completely end, but its intensity can subside. From time to time it will resurface and I've learned to welcome it, as it gives me the opportunity to be reborn.

In the movie, "Harry Potter and the Chamber of Secrets" there is a special bird called a phoenix. The phoenix has some unusual characteristics.

When he reaches the end of his life, he bursts into flames and is reborn from his ashes. His tears can heal the wounded and he has the ability to carry incredible loads.

There are times when I feel like the phoenix. I need to burn up so I can start over. From the ash comes additional strength and courage to go on and never give up.

My tears may not heal the wounded, but they do heal me. Lastly, it feels as though the weight on my shoulders is almost unbearable, but I've managed to carry it.

With the passage of time my grief has become a gift. Another door has opened in which my life has become more meaningful. One day, my husband asked me to imagine our lives without our son.

I could describe it with a single word: "shallow." I've found you can live a "shallow" life just as easily as you can drown in shallow water. It's only a matter of choice.

Strangely, many years ago "perfect" was something I strived for. Now, I strive for less than perfect.

All because of a child who may never be "perfect," who may never be "normal," but who will simply love me with all his heart, no matter what.

A lesson learned through the process of grief.


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