A featured letter to the editor posed a question that offers a different perspective on a prenatal test result for Down syndrome.
Several years ago now, a book of essays by mothers of children with Down syndrome was published that had a significant impact. The book was edited by Kathryn Lynard Soper, who titled the collection, Gifts: Mothers reflect on how children with Down syndrome enrich their lives. I don’t know how many copies it sold, and it was not a New York Times bestseller, but it still made an impact.
At the 2008 convention of the National Down Syndrome Congress, Kathryn co-hosted a new parents workshop. When the time for Q&A came, a mother stood up, and holding her daughter, shared:
This is Grace. I just wanted you to know that if I hadn’t read your book, my daughter wouldn’t have been born.
Soper would go on to feature this story in the sequel, Gifts 2, which features essays by family members and loved ones about their relationships with individuals with Down syndrome.
These books demonstrate that the term “gifts” is one that is often used to describe children with Down syndrome. It reflects the surprise parents experience in finding out their child has Down syndrome, and how it may not have been something they would have chosen, but is something that they have accepted–so much so that they consider their children gifts.
So, while this idea of children of Down syndrome as gifts is not new, the letter to the editor by a mom put a bit of a different spin on it.
The mom wrote the following:
If someone gave you a package and the outside of the box was tattered, torn, crumpled, etc., would you open it, or would you look at it and just throw it away thinking, “Nothing good could be in this”?
I doubt many people would simply throw away a gift because it was poorly wrapped. Instead, I think most would still accept the gift and still excitedly open it.
Now, I’m posting this while I’m still making my way through George Estreich’s book, The Shape of the Eye. I just finished the section where George shares how, at the time of reading up on Down syndrome after receiving his daughter’s diagnosis, he couldn’t stand the descriptions of children with Down syndrome as “angels” and “sweet.” I wholeheartedly agree with George’s reaction.
When I’ve presented on providing balanced, accurate information about Down syndrome, I’ve derided those who wish to describe children with Down syndrome in such terms as the “sunshine and roses” crowd. Describing and discussing Down syndrome in such a saccharine way is not balanced or accurate, and it strips children with Down syndrome of what most needs to be appreciated: their humanity. And, as humans, they are flawed, difficult, and not “angels” or “sweet,” at least not all the time.
The writer of the letter to the editor goes on to engage in such description, writing of how children with Down syndrome can be “a beautiful, rare diamond.” They can also be as dirty and dark as the lump of coal that preceded the diamond.
But, her point on accepting a gift, even if poorly wrapped, is one that I thought was a good perspective. It should not be read to mean that people with Down syndrome are “poorly wrapped,” or at least no poorly wrapped than the rest of us. But,if someone were to give you a gift, even if it was poorly wrapped and didn’t look on the surface like something you would want, I would bet most of us would still open it up to get a better look at what’s inside. And, that is something we may need to appreciate in this new era when more, and soon most, will receive a diagnosis prenatally before their child is unwrapped from the womb.
Gifts and Gifts 2 are available for purchase at this link. Disclosure: an essay of mine was chosen for Gifts 2. I have written about Kathryn’s experience at the NDSC convention before at this link.
I don’t know about anyone else but this didn’t make too much sense to me. My Daughter, Julie was a precious angel to me. I didn’t know she had Down Syndrome until after she was born. I only had her for about 3 1/2 years and then she went back to be with God. I didn’t love her any less then my other children.
I think this points more towards our cultural need for control rather than acceptance. Including who gets born.
The only poorly here that I can read. Is the persons poor attitude about something they dont understand. My brother has down syndrome. He isnt a poorly anything. Hes my families pride and joy. I wish these ignorant moron would quit looking at facts from ages ago and scientific studies and instead get to know someone with down syndrome and their family. Talk to people who wanted their gift and not those who are selfish amd see it as a burden.
A few years ago at Christmas, I was a participant in a White Elephant Gift Exchange. We were to bring a wrapped gift to be chosen or exchanged based on each person’s turn to draw from the gift pile or “steal” someone else’s gift . Having played this game previously, and with the experience of being a mom who’s delightful daughter with Down syndrome came “wrapped differently,” I intentionally wrapped a really fun gift in a very simple, non-descript package. There wasn’t even a pretty bow placed on it. The first gift chosen was a large, ornately wrapped box that included extra “pretties” attached to the bow. It was actually a box within a box within a box with a very small keyring as the actual gift. (A lot of fluff and effort for an unsubstantial item.) As the exchange continued, I kept watch on my humble package and realized it was not even among the top ten chosen. As you may have guessed, the last gift left in the pile was the one I brought. The person with the last number was not enthused about reaching for the gift, but being a good sport, picked up the little package, sat down and opened it. A broad smile lit across his face and the crowd of on lookers gathered around as together they all thoroughly enjoyed the pictures and stories that appeared in the “Time Life Photo Journal.” It was the best gift of the evening and the receiver refused to exchange it for any of the other ornately wrapped gifts in the group. He knew he had won the best gift, even if by default.