Letters from the week of December 9, 2004

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.

Thanks for sharing your story! Thanks for looking at your Sophie so honestly, so wonderfully.
Cheryl Fisher, mother to three adopted special-needs children

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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