Down Syndrome Awareness: Guest Post by Jodi

Jodi is a very good friend of mine.  She’s a college professor (she teaches Political Science), and one of the smartest, wittiest, and most pragmatic people I know.  We met when she joined my book club a few years back, and since then, she’s been an unending source of support and encouragement to me, not only with regard to Finn and Down syndrome, but through Michael’s cancer and residual health crises, and with regard to my writing.  I’m honored that she wrote this post for my blog.



 My son Jason was born a few weeks before Finn and I envied Lisa what seemed like a very easy pregnancy while I was sick every single day. But while my stomach stopped churning as soon as my son was born, Lisa’s life was turned upside down after Finn’s birth. Not just because Finn has Down syndrome, but also because of the medical problems — having to go to the hospital, seeing him with tubes and medical devices, etc. I sent her something I’d read long ago by Emily Perl Kingsley — “Welcome to Holland,” and then rushed off to the bookstore because on some level I think every problem can be solved with a book. I found what looked like the perfect book, “Road Map to Holland” by Jennifer Graf Groenberg so I bought two copies – one for her and one for me – and found a writer who described her journey honestly and openly. Lisa and I talked about having to mourn for the life she expected for Finn in order to accept the life he would have. But, now – four years later, I realize that every parent has to readjust their expectations of how life will turn out for their children and you really never know.

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” – Elizabeth Stone

The reality is none of us can really predict what will happen to our kids. We try to keep them safe and teach them what they need to know to become productive, happy, well-adjusted adults. But there are no guarantees. Whether our kids get hurt or sick. Whether they become that sports star, whether they are straight or gay, whether they go to the “best school,” whether they are happy and fulfilled. Whether they give us grandchildren and live close enough so we can enjoy watching them as parents. Whether they become addicted to drugs or end up in jail. We all have these expectations for what we want for our children, but we have so little control over the outcome.

It’s interesting to see how the old expectations of children with Down syndrome were so radically different from today. Forty years ago, institutions were standard and families were discouraged from raising their own children. Life expectancies were considerably shorter and there wasn’t much hope for a fulfilling life. Now, the expectations have been broadened so much they seem limitless. Adults with Down syndrome are living productive, independent lives, falling in love, working, and pursuing all kinds of hobbies and interests.

Finn is exactly who he is supposed to be – extra chromosome and all. He’s developing on his own timetable and will become the person he’s supposed to be with the love and support of his family and friends. Just like the rest of us. That’s what I’ve learned. Parenting is accepting our children for who they are and trying not to worry too much about a future out of our control.

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One Comment on “Down Syndrome Awareness: Guest Post by Jodi”

  1. Caryl Becker Phillips
    October 24, 2012 at 12:02 am #

    Well said Jodi!!

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