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Location: Cheshire, Connecticut, United States

devilishly handsome, screamingly funny, overly modest

Monday, December 19, 2005

12-19-2005

This blog is dedicated to my classmate Holly.

One thing that was undeniable in our study of blogs is the cathartic effect of the blogging process. All of us discovered significant personal things about each other through our writings even though we spent only a few hours in personal contact. This process is continuing, for me at least, reading the blogs of my classmates who have continued writing. Last Saturday's post by Holly brought me to tears. Here's why.

32 years ago, when my daughter was 2, she was diagnosed with leukemia, which we thought was a death sentence. Medical science had a break-through, but the process was flawed. Amanda was cured of leukemia, but was overdozed with chemotherapy and radiation which left her brain-damaged, " mentally retarded" was the term used. My beautiful, gifted two-year-old was left with an IQ of less than 70. When she was 5, we had her tested at Gengris Center and were told that she would never read or write and they predicted that she would end up eventually in a group home with a very limited existence.Thesignificantly underestimated my daughter's strength of character, and ours.

One of the most difficult adjustments that a parent has to make in this situation is the loss of the "Dream". When a child is born, every mother and father has shining hopes for huge successes in the child's unlimited future. This rosy scenario comes crashing down when a disaster like ours occurs. Many marriages don't survive , as one partner or the other slips into denial, depression, guilt ,anger, or abuse (substance or physical). Some people, however, find the love and the strength to help their child succed in the world, and when the child does, the rewards to the soul are tremendous.

Getting the proper support from the school sysem is a major frustration. Lack of funds, mediocre teaching , and unknowledgeale administrations makes every forward step like slogging through a swamp. Constant vigilance and interactive participation is a must for parent's of "special needs" kids. It's hard to make the system work, but when it does , the results are extremely satisfying.

Gengris was wrong. Amanda, through incredible personal effort, can read and write a little. She is able to live in her own apartment with some daily assistance from an agency (which we chose after some failures). She works in a sheltered workplace, and that combined with her entitlements makes her financially independent, a fact of which she is fiercely proud. At 34 she has a social life and a good relationship with her family. In short, she is happy with her life.

Raising Amanda, after a gut-wrenching start, has had a really beneficial effect on our life also. My wife, originally a school teacher, made the experience into a career, being employed as an educational consultant (and parent contact) at the Special Education Resource Center. I have initiated special needs programs in 5 different sports, and still coach 3 annually. I find a patience there that doesn't exist for me anywhere else.

This is to you, Holly. I'm 20 years down the line from where you are now . My daughter, like yours, makes astounding (to me) insightful remarks out of the blue, making connections that I thought were impossible for her. I wish you all the joy in the world with your daughter. Never underestimate her.

Later.

2 Comments:

Anonymous colleen said...

Hi Bill,
A very powerful post. I appreciate your sharing it.

I just retired from 9 years of providing foster care for an individual with mental retardation and am still very plugged in to that community.

10:18 AM  
Blogger Holly said...

How can words accurately express the range of emotions I felt as I read your post... and linger still?

Thank you.

The beginning is gut-wrentching, isn't it? I vaguely remember those dark days some ten years ago... my memories are clouded over with dark shades of grey, but the emotions live on ... the anger, the guilt, the unfairness of it all... the MOURNING - yes, that was the worst one. We mourned for what would never be - for what Serena would never do - we mourned the loss of the child we hoped to have, we mourned the loss of our own dreams - sadly, while she was still very much alive - just 'different.'

I felt your pain, your wife's pain... I can't imagine having a child diagnosed with something so devastating, then being cured, only to have such consequences to live with for the rest of our lives... and that's it, isn't it? THE REST OF OUR LIVES... It is so overwhelming - so larger than life when you look at it that way. It's bigger than we are. And it's scary.

It took me a long time to accept... and I'm not proud of that fact... and even still, I have my moments. But I have come to find that yes, ignorance IS bliss... and it sometimes takes something like this to make us see that the world isn't all bad. And maybe, just maybe, THEY are the ones truly blessed - they have an inner peace and happiness that we will never know simply because we know too much.

I'm happy to learn that Amanda has a satisfying life. It's all any of us can really ask for anyway.

Thanks again, Bill. Not only do you have a great sense of humor, but you have a sensitive side, too! I knew it was in there - humor is sometimes a way that people like us mask the pain... and avoid making those around us unhappy.

12:06 PM  

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