What some moms have learned from having children with Down syndrome

holding-hands.0212With World Down Syndrome Day happening last Friday, several moms shared their thoughts on having children with Down syndrome. Here are some excerpts.

7 unexpected things my son can do

Kari Wagner-Peck, who blogs at atypicalson.com, shares seven things at Parents.com that her son can do that she couldn’t at his age. She does so not because she’s surprised he can do them given that he has Down syndrome, but because he can do things she couldn’t at his age. She concludes:

In spite of how others perceive him, Thorin likes himself very much. He exudes confidence. How long can he be expected not to internalize the puny view some people have of his Down syndrome? The fear my husband and I have is that the world will extinguish that spark.

In reading over this I realized not only could I have not done these things our son takes for granted many of them I never had to even consider.

The problem facing people with Down syndrome

Meriah Nichols, who blogs at withalittlemoxie.com, writes at news.com.au about the problem people with Down syndrome face. I would add her point to the post I wrote about conserving disability and how we are just now starting to see what having Down syndrome truly means now that individuals are being given a chance to flourish. But, as Meriah notes:

We will never truly learn what anyone with Down syndrome — or any disability, or plain ole’ human being when it comes to that — have to offer if we push people into moulds. If we don’t let them be who they are, if we don’t encourage every aspect of who they are to flourish so that flowers that we never even knew existed would have the wherewithal to emerge, sprout and bloom.

And that’s part of the key here to me — ‘flowers that we never even knew existed‘ — because we know very little about Down syndrome in particular and intellectual disabilities in general. We have been so busy for so long in not listening.

Needy, just like you.

Along similar lines, Amy Julia Becker, who writes everywhere and blogs at Thin Places, shares her appreciation for her daughter’s gift of contentment, and her realization of where Down syndrome fit in the scope of who her daughter is and who we all are:

When Penny was diagnosed with Down syndrome at birth, I was sad and scared. The sadness and the sorrow dissipated with time, replaced by joy and hope. One of the reasons I began to have joy and hope for this baby I loved was because I began to believe that she wasn’t defined by the list of delays and disabilities and diseases associated with her condition. I began to see that I was needy, just like she was, even if I was better able to hide my needs from the world around me. But I also began to see that her needs were only one part of her. She, like me, like everyone else, was also gifted—able to offer something to me and the world around her. I began to see that she was as human as anyone else—broken and beloved, vulnerable and able, one who could give and receive.

A notion that we all have needs and will need help and support that I expressed in my op-ed on World Down Syndrome Day.

Why one mom accepted prenatal testing after her child was born with Down syndrome

Leah Thompson, who blogs at Our Cora Bean, has a guest post at VaginaPagina, on choosing prenatal testing in her pregnancy after having a child with Down syndrome. It’s a take worth appreciating:

I am constantly fielding questions about whether we have done prenatal testing this time around, because the world seems to feel that the possibility of having another child with Down syndrome must be my worst nightmare. But that is not the case. My worst fear is not having my child at all.  * * *

In the end, though, we did decide on limited testing. We realized that having the supports in place for the safe birth of my daughter is more important than my personal stance on upholding the value of a life with disability. Ruling out the most likely possible complications made me feel better about planning a second home birth, and seemed like a good way to begin to quiet the fears that come from my memories of Cora’s roughest moments.

Of course, .. I know that you cannot test for every possible concern. … A diagnosis comes with a list of possible medical conditions, a million worries, and the opinions of many people who believe that your child is of limited value. But a diagnosis absolutely cannot define who a person will be, what will make their heart fill with joy or inspiration, or how much an interaction with them can brighten lives. There is so little that a test can really tell you. And there is no way that any test can show the value of a human life.

Why one mom decided to rest on World Down Syndrome Day

Gary Hughes Bender, who blogs at the ordinary life of an extraordinary girl, wrote that she is resting on World Down Syndrome Day. Her daughter, Alex, is 20 and in college. There are no kids at home. And, so, Gary shares a perspective that I doubt many new or expectant parents can envision–one I surely couldn’t–that there could come a day when this child who is labeled medically fragile, special needs, developmentally delayed, a burden, may move out of your house and you’ll be an empty nester. And, I think I’m going to feel that same pang of longing that all parents feel, probably even more so, should my Juliet go get a place of her own. But, like Gary, I’ll take that day to enjoy the work that has gotten us to that point.

10 things you should know about your prenatal Down syndrome diagnosis

The Maiden Metallurgist, a mom who blogs (and met her husband via his blog), shares “10 things you should know about your prenatal Down syndrome diagnosis.” It is a very helpful list, with all 10 being very good points for expectant moms to appreciate. She ends by linking to downsyndromepregnancy.org, an on-line support community for expectant moms with a free downloadable book on Diagnosis to Delivery. It is the only book of its kind–written specifically for expectant moms who have decided to continue after finding out prenatally–and is recognized by the National Society for Genetic Counselors as an approved resource. “DSP” is part of the National Center for Prenatal & Postnatal Down Syndrome Resources, and is one of the prenatal resources shared on this site. Lists by definition leave things out. After reading her list, please share in the comments what else you think expectant moms should know about a prenatal Down syndrome diagnosis.

Some people yearn for a child with Down syndrome

And, finally, here’s a post that I hope you will read in its entirety, particularly if you have a prenatal test result. It’s written by a mom who knew her child had Down syndrome prenatally, but her child also had significant health concerns. Sadly, her baby did not survive long after birth. But, please read all that she has to say. One excerpt:

What I wouldn’t give to still be facing those worries, fears and stresses. With all that could be unexpected with a baby, I have learned that Down Syndrome is a welcome, livable one. You can have a warm body to hold, smiles to capture and personalities to get to know. I was ready to give up my career and lifestyle to have these opportunities. As I sit here with empty arms, I want you know that some people yearn for a child with Down Syndrome and might even be jealous of your situation.

Read the whole thing, and, particularly if you’re a parent to a child with Down syndrome (prenatally or postnatally), I dare you not to get misty-eyed.

Thank you to all the moms out there sharing what you want others to know about having a child with Down syndrome.

Comments

  1. Great collection of snippets, Mark! I feel honoured to be included

    • I love your phrase, “flowers we never knew existed.” It’s so true, though. This very short-sighted, literally stupid view that if a person isn’t like another person who is better educated, has a better job, or makes more money then it’s the other person who is different, disabled, and needs help, is the root of so many problems. Thank you for shining a light on it and for enjoying Moxie just as she is.

  2. Thanks so much Mark for including the voice of a Mom with an older child with Down syndrome. What a magical journey it is!

  3. Great selection of blogs, I will be sharing them around!

  4. Great collection, I’ve really enjoyed all the different outlooks this year.

  5. Thank you for sharing!

  6. Thanks again Mark. A great collection of viewpoints and sentiments. I love world ds day and the growth it’s experienced in the 7 short years we’ve been on the journey. Part of me, though, thinks it would be nice not to have a “special” day, or perhaps just a “being human” day :)

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