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
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!
Thanks for sharing the Huffs' story. I hate it when people say patronizing things, but they are truly heroes!
Lisa Lilienthal, Atlanta, Georgia
Feeling connected: I don't have children, and don't know if I ever will. But, Amy, I just wanted to tell you that I'm glad you shared with the readers your personal story. Even though I am a complete alien to the world of motherhood, you made me connect with you and with the families profiled. Thanks again for a story that made me think and feel at the same time.
Valeria Fernandez, via the Internet
Not in it alone: I have a three-and-a-half-year-old daughter, Sarah, who has Down syndrome. I just got done reading your article, which had been on my bookshelf since my sister-in-law gave it to me a week earlier. She read me bits and pieces of it, and then my husband read it, but to be honest I didn't know if I wanted to read it. I didn't know if I wanted to face the realities that you would speak of.
But I just have to say, "Thank you." I am so glad to see someone write about Down syndrome and not sugarcoat it. It is a big deal, just like you said. Yes, children with Down syndrome tend to be happy most of the time -- my Sarah sure is -- but she is also like taking care of 10 kids at once.
I am so busy with her that I feel like I haven't stopped and sat down since she was born. I constantly have people telling me, "It's okay," or, "Oh, she's doing so good." I know they don't know what to say and are just trying to make me feel better. Sometimes I want to scream and say, "Don't you see her? No, she's not. She can't do anything. No talking, barely eats on her own, just started walking, and she's three and a half. She's a baby, and I have to take care of this baby forever!"
It does make me sad to think of what future my daughter won't have because she has Down syndrome. But I'm also happy to think of how happy she'll always be and the joy she has brought to my entire family.
I like it when I read stories about other families who have children with Down, and I like it when the truth is told. It reminds me that I'm not in this alone, that my feelings are not strange. I appreciate the story about the Huff family and your decision to share your story about Sophie.
Shelly Umbanhowar, Phoenix
Not terribly nice: I just finished your article, and I laughed and cried. You see, my 17-month-old son has Down syndrome. I really don't understand, because I am not terribly nice, either, and I always thought that you had to be to have a child with Down. I, too, have avoided sugary-sweet support groups. Thanks for the great article!
Kim Ward Hart, Phoenix
Special parents: I am the parent of an adopted Down syndrome little girl named Madeline. My husband and I just finished your story, Amy, and we want to thank you for your candor. It certainly was a refreshing change of pace to hear you be so real about the experiences you share with the Huff family.
One thing I have learned: Every parent with a special-needs child is a saint in their own right. Moms especially. I love the poem by Erma Bombeck about "Special Mothers," and I hope you have seen it. I also hope that you, in spite of what your story suggests, have found support in a group of some sort.
Like you, I also originally approached Gina Johnson's group, and was "put off," too, for myriad reasons. I joined the DSNetwork, even serving as the group's president until recently, and found that it, also, was just a different time and place than I needed to be in. I am not suggesting that there aren't good groups out there, but I think you have to find the one that fits where you are right now.
An unforgettable story: Let me add my voice to the many others who have no doubt written. I have to say that I've never cried at Taco Bell until today. No fooling. I had to wipe away a few tears over my nachos. They were tears of shame at looking down at those with Down syndrome and their family members, as well as tears of joy from reading how happy those family members are.
Stephen King wrote in his book On Writing that good writing is an act of telepathy, that the writer projects what he or she is thinking into the minds of the reader. Although I understood that concept when I first read his book, I never truly experienced it. Not until this article. I've never felt so completely in tune with the author as I did with this piece.
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It took courage to open up like Amy Silverman did in sharing her story and that of the Huffs. I can understand why Amy indicates that she and Paul Rubin make fun of journalists who share their lives in print; I imagine that it is difficult to consider yourself a hard news journalist without engaging in this practice. However, in this case, it made the piece unforgettable.
Drew Grgich, Gilbert
The way it was supposed to be: Your article gave me a small picture of what my cousin and his wife go through on a daily basis.
I had one moment much like that of your best friend, only I said to the both of them, "I am happy for you." This was after their Down syndrome child was diagnosed. I had just thought that they could do well, and that somehow it was the way it was supposed to be. Your story opened a great picture show about the beautiful little girl in my family.
Trevor Gummere, St. Clairsville, Ohio