Letters from the week of December 9, 2004

 Down, but Not Out

One day at a time: Thanks, Amy Silverman, for writing your story. The story on the Huffs was beautiful as well, but it was yours that touched me ("Up the Down Staircase," November 25). I normally wouldn't have read this, as I tend to avoid these types of articles -- even though I have a 17-year-old severely retarded and autistic son named Zane. But my 20-year-old son gave me the article and said, "Read this, Mom, and don't tell me later that you did when you actually didn't. Really read it!" It was Thanksgiving, and, well, I felt I owed him this.

I'm glad I read it. I shared so many of your emotions. Since I had sort of checked out with support groups or reading anything inspirational or motivating on children or families with disabilities years ago, I hadn't really had the opportunity of sharing my emotions with anyone for quite some time. I had found the support groups to be more depressing than helpful, and perhaps, like you, I just really didn't want my life to be defined by my child's disability.

But also like you, while I don't want to solely associate with families who have children with disabilities, I find myself sort of uncomfortable around my friends with typical children. It's like they don't know what to say or how to act around me. I appreciate their sentiment, but some days I just would rather talk about anything but Zane, even though he is the love of my life and my world does revolve around him.

Of course, this roller coaster we ride will have me sad and depressed the next day if no one cares enough to ask how he is. No wonder I have alienated most people in my life.

I had one friend whose child was having tubes put in her ears, and she didn't even tell me about it. I was hurt, because all of my other friends were going to be taking over food and helping out with the other kids, and I wasn't even notified. Later she told me that she didn't want to "bother" me with something so menial when I had so much to deal with on my own. I guess I understand why she might have thought that, but my response back to her was: "Everyone has their own cross to bear, and yours is just as heavy for you as mine is for me."

Anyway, the most poignant thing that you wrote about was your discomfort when looking at older children or adults with the same or a similar disability. Tears welled up inside of me when I read that part. See, that has always been my biggest hang-up with meeting other families or going to support groups. While others might find it comforting to see these families of older children, or adults out there being happy or making the best of their situation, I would just as soon ignore the fact that Zane will never grow up.

When he was 3, I couldn't look at 7- to 10-year-old retarded kids. When he was 10, I couldn't look at 14- to 17-year-olds. Now that he is 17, I can't look at adults with disabilities. I cringe when I see a group of "them" at the mall, or a 60-year-old mom with her 35-year-old Down child at the dentist.

I always had hope that Zane would grow out of it, but at age 5, it was obvious that his would be a lifelong journey. It's a lonely journey most days, as I am a single mom with no family in town, but don't feel sorry for me! I have done enough of that on my own, thank you very much!

I have read about hundreds like the Huffs and could write my own book, but reading your candid account of your range of emotions really did some healing and allowed me to relate to you in a way I haven't with anyone else.

I would send you a picture of Zane, so you could see his beautiful smile. But since you indicate that you are like I was when my child was 2, you would just as soon not look at a 17-year-old like Zane. But I will tell you this: He is beautiful! And just like your Sophie, he brings pure joy, love and innocence into the world. So, for that, I thank God for having the distinct pleasure of being his mom.

You and your husband have a beautiful journey ahead. Make the most of it!
Brenda Gray, Phoenix

The true heroes: I just finished -- in tears -- your New Times article. My 3-year-old son, Cooper, has Down syndrome. His 5-year-old sister, Annabelle, does not. I loved your candor and wit!

We have had some interesting times as well:

I have used a wheelchair since age 8 because of a spinal tumor, so during my pregnancy with Cooper we were certain we would be over our quota for disability. Nonetheless, I had the amnio to satisfy my curiosity. And, of course, I learned that there was more therapy, advocacy and accommodation in my future!

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