What Might Go Right

October 4, 2007 | 12 comments
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I was signing copies of GIFTS at a Barnes and Noble author event when a tall, brunette middle-aged woman approached the table. She peered at me and the stack of books at my elbow with curiosity.

“Do you have any friends or family members with Down syndrome?” I asked.

“No,” she said. “I’ve been lucky.”

It took me a few long seconds to recover from that remark. I don’t remember what I said in reply, but I took care to keep my voice friendly. Surely she wasn’t intending to be insensitive. And after all, until my son Thomas was born–and for several months afterward–I shared her sentiment: We’re lucky if we never have to deal with Down syndrome.

I don’t believe that anymore.

Thomas is about to turn two. He’s taking his first steps and speaking his first words. The fact that he has Down syndrome does not in any way lessen the delight of his childhood. If anything, our family’s pleasure in his company is heightened by his diagnosis, thanks to the many ways his presence has opened our minds and hearts. We are the ones who are lucky.

I didn’t know that from the start. And that’s why I compiled GIFTS, a collection of 63 personal essays written by moms of kids with Down syndrome, each describing the gifts of respect, strength, delight, perspective, and love which their child has brought into their families. The purpose of the book is to illustrate why the life of a child with Down syndrome is something to celebrate.

This is a message desperately needed in our society. In a previous post I noted that in the USA, 90% of fetuses with Down syndrome are aborted. I drew attention to the current clinical climate surrounding a diagnosis of Down syndrome, and asserted that the unbalanced information given to patients by their doctors might contribute to the alarming abortion rate. Medical professionals do a great job educating parents about what might go wrong if they welcome a child with Down syndrome into their family. My lament: If only parents could know what might go right. If only every parent facing a diagnosis of Down syndrome could read supportive, candid, hopeful stories like those in GIFTS.

I’m pleased to announce that Barnes and Noble Booksellers are taking steps in this direction, led by CEO Steve Riggio, whose adult daughter has Down syndrome.

–On Saturday October 13, Utah Barnes and Noble stores are hosting a book fair to benefit the Gifts Outreach program.

–Barnes and Noble will give the program up to 25% of all sales accompanied by a Gifts Outreach book fair voucher on the appointed day.

–The voucher is valid at any Utah Barnes and Noble bookstore, all day.

–All funds raised will be used to buy copies of GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives for Utah’s Down syndrome support organizations to distribute to new parents and medical professionals statewide.

Special book fair events will be held at several Wasatch Front stores.

If this event is successful, Barnes and Noble will consider hosting a regional or even national Gifts Outreach book fair next spring, in connection with their second annual Down Syndrome Awareness Day. Such an event would enable Gifts Outreach to get thousands of copies of GIFTS into the hands of new parents.

October is National Down Syndrome Awareness Month. Take positive action by supporting the Gifts Outreach book fair! If you’re a Utah resident, please spread the word in your schools, churches, and communities (you can download an explanatory flyer here). If not, please forward this information to your Utah contacts and encourage them to participate.

Thanks for helping families touched by Down syndrome understand what might go right.

12 Responses to What Might Go Right

  1. Matt Evans on October 4, 2007 at 5:05 pm

    This is wonderful, Kathy, you’re doing great, great work!

    I have a couple B&N cards that I’ve been wanting to clear out of my wallet — I’ll print your voucher and do it on the 13th to support GIFTS.

  2. Curtis DeGraw on October 4, 2007 at 5:17 pm

    Wonderful, Kathryn. I hope it exceeds even your wildest expectations.

  3. Adam Greenwood on October 4, 2007 at 5:55 pm

    Sounds great.

  4. Kathryn Lynard Soper on October 4, 2007 at 6:03 pm

    Thanks, guys. Matt, you rock!

    fyi, everything counts as far as sales go: books, music, calendars, gift items, chocolate… the only things that don’t count towards the book fair are gift cards (meaning, you can’t purchase new ones as part of the fundraiser–you CAN buy other items with gift cards you’ve got on hand, though) and cafe items (darn). Get a jump start on your holiday shopping, Utah folks! The good feelings are free.

  5. john f. on October 5, 2007 at 7:15 am

    This is wonderful, wonderful work you are doing. Thank you.

    My childhood was enriched by the fact that my elementary school had the “special” kids, although back in those days, they were not integrated into regular classes but had their own program. Still, they were there in the halls, the cafeteria, and on the playground. I believe that I greatly benefited from this.

    My daughter has a child with Down syndrome in her Year 2 class (approximately second grade) here in our neighborhood. She was in her Year 1 class as well and advanced with the rest of the class up to Year 2. My daughter’s day brightens up when she sees her as I drop her off at school and the kids all line up to go inside. With her childhood enthusiasm, she goes right up to her every morning and gives her a huge hug. And it is wonderful to watch my daughter interact with this girl because although she treats her as a friend, she also shows her all the tenderness she shows her little sisters.

  6. Patricia Karamesines on October 5, 2007 at 11:12 am

    Wow Kathryn, this is wonderful, on your part, on the parts of the contributors to GIFTS, and on B&N’s part. I deeply appreciate your efforts to keep the “other story” of raising Down syndrome kids open. Parents looking for hope and direction — many of them instinctively, going against the prevailing health care (including insurance companies’) narrative — will celebrate what you will help make possible for them.

    As an aside, I know people vehemently against buying anything from big bookstores or even selling one’s wares through them on moral grounds. Big bookstores crush the smaller, independent competition, etc. But here’s a case where a big bookstore has the interest and the means many smaller ones wouldn’t have to promote a special project that will, I expect, have a large-scale, creative, productive, maybe even moral effect.

  7. Lisa F. on October 5, 2007 at 12:53 pm

    Kathryn,
    Our small public library in rural Wyoming has a copy of your book. They have graciously increased their books on the topic of Down Syndrome in the past years. I think, though they have never told me so, that they simply did it after seeing the number of inter-library loans that I requested for books about Down Syndrome. So I have read your book! It is exactly the type of writing I would have loved when my daughter was born 10 years ago. I just needed to read about other people’s experiences and get some kind of vision of what this journey would be like.

    Have you thought about doing this again (editing a book, I mean), with essays from parents or family members of older children/ teens/ young adults with Down Syndrome? I think there is a significant need for that as well. The best one I have found is “Differences in Common” by Marilyn Trainer. “Life as We Know It: a father, a family, and an exceptional child” by Michael
    Berube is also excellent.

    I wish I were going to be in Utah on Oct. 13. Hooray for B&N and for you. Thanks, thanks.

    Lisa F.

  8. MDS on October 5, 2007 at 1:37 pm

    Kathryn,

    You may already know this, but the T&S readership may not. Another Utah mom, Melanie Miner, who I consider a friend, has written a similar book:

    http://www.amazon.com/Lives-Touched-Syndrome-Melanie-Miner/dp/1411664051

  9. Kathryn Lynard Soper on October 5, 2007 at 6:31 pm

    MDS, thanks for referencing Melanie’s book. I discovered it a year or so ago and it was exciting to see how other women have been inspired to undertake outreach efforts. I especially appreciate how she offers stories on her website, so that parents who can’t/won’t buy a book can catch glimpses into the positive experiences of others.

    Lisa, hooray! So glad GIFTS is on the shelf. Yes, we’re currently accepting submissions for a companion volume which will focus on school-age kids on up, with stories written by a variety of people: friends, family members, professionals, etc who have a relationship with someone with Down syndrome. The submission guidelines are here: http://www.giftsds.segullah.org/Gifts_vol_II.htm
    I like Trainer’s book as well–I’ll have to pick up Berube’s. All my best to you and your family!

    Patricia, yes, I too am impressed by B&N’s community outreach efforts. Thanks for your encouraging words!

    john f., thanks for sharing this beautiful experience.

  10. Seth R. on October 6, 2007 at 10:25 am

    Down Syndrome is actually rather charming in its own way.

    Autism is just freakish and even scary at times. It’s like your baby was taken away at night and replaced by some doppelganger. It’s sometimes that sudden. You just watch the lights go out and suddenly you’ve got a shell of a kid with no emotion left in him.

    People used to come up to my mom and tell her “oh, what a blessing it must be to have been given such a trial…”

    To which, my mom would reply “I’d rather skip the spiritual growth and have my baby back.”

    Amen mother.

  11. nita on October 6, 2007 at 10:30 pm

    I just started checking out this forum today, usually I look elsewhere. I live in NoVA and got your book out from our local library as well.

    So funny to come here and see you have a post here. I\’ve read a few of the stories and really enjoyed them. In No VA, next weekend they are having a \”Buddy Walk\” (for those who don\’t know, a walk to show support for those w/DS and to help increase awareness). I signed up to help w/the walk, and am excited to be there next week.

    I used to work as a direct care giver for those w/severe disabilities. The people w/whom I worked lived in a state residential facility for those w/these challenges. I worked w/one young man who had DS and many severe physical challenges. He was nonverbal and he functioned in the profound range of mental retardation, etc. Anyway, one day, he gave me one of the greatest gifts- I had endured a frustrating day, and I was on the verge of tears, as I\’d overheard a coworker criticizing my ability to lift our patients. So I was about to cry– and then, I looked at this young man w/DS– and he gave me a huge smile, and he kept me from crying!! It is nearly 13 years later and that smile on that day is still one of the most precious smiles I\’ve ever received!

    Good luck w/your book.

  12. Kathryn Lynard Soper on October 9, 2007 at 2:02 pm

    Seth R., my son is indeed thoroughly charming. Whether that has anything to do with DS is up for debate….

    nita, hello! Thanks for commenting here, and for sharing your experience. Amazing how much good a smile can do.

WELCOME

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