Long road home

I can’t remember ever feeling so desperate–so lonely–as I did lying in the Georgia hospital bed that day after Thanksgiving.  The baby girl in the bassinet beside me was as much a stranger as there ever was, in spite of that fact that I’d spent all those weeks pining away for her.  Waiting.

That young doctor girl turned it all on its side when she came to me and uttered words so unexpected: down syndrome.

I go back and forth.  Would I rather have known ahead of time?  Would the slow steep of truth have stung any less than the jarring shock of a diagnosis delivered that day–that way?  I suspect it would have been easier.  Less lonely.

It was just she and I there in the sterile light.  I flipped through channels to drown the hum of silence.  It was November 26th, 1999.  Dateline aired a show about a boy fighting for his life–a genetic disease that left no hope.  My strangerbaby slept in my arms as I watched.  The parents of that sick little boy had no clue that a young mom would be watching from her hospital bed, the day after giving birth to a daughter with an extra chromosome.  And so when they tearfully spoke about their son’s imminent passing, they weren’t speaking to me, directly.  When they talked about all the things he wouldn’t do–all the places he’d never go, I wasn’t even a blip on their radar.   Even when they said that they see people with Down syndrome bagging groceries and they wish they could tell the parents of those same grocery baggers how very blessed they are, they weren’t really talking to me.  But also?  They were.

I wish I could find a clip of the show.  I wish I knew their names at least, so that I could track them down and tell them how much I needed to hear that message that night.  I wish I could tell them that whether they knew it or not, God used them–wrote them right into my story without them ever even knowing.

Cass reads1 (1 of 1)The baby I held grew out of my arms.  Now she’s a teenager struggling to find a balance somewhere between what has passed and what is yet to come.  She makes me cringe when she repeats certain words and phrases from school.  When I walk into her room to put away clean clothes she stops her play, requiring the utmost privacy for such things as sing-a-long CD’s and a DocMcStuffins kit.  She throws her glasses when she’s mad, without regard to the cost of replacing scratched lenses.  She ignores what she wants to and grumbles in response to most everything else.  Don’t be fooled; she knows what appropriate behavior looks like.  Choosing to comply is another thing entirely.  She’s stuck in this teenchild place and sees fit to bring me along for the ride.

The roadmap to where we are lists turns at Exhausting Avenue and Exasperated Sigh Boulevard.  And then there’s a long straightaway on Keep the Faith Interstate.  This map, though, it unfolds as we go–no end in sight.  Just a destination that promises to be worth the trip.

Judging by where we’ve been, I’ll believe it.

Cass reads (1 of 1)

7 Replies to “Long road home”

  1. It’s not any easier knowing ahead of time…it’s still just as lonely. However, you and Cass are an inspiration for us and I have driven down the Super Success Road with Cass many times and know that will be her ultimate direction…and it’s all because of her loving family.

    1. You’ve done more than driven down that road with her, my friend; you mapped the route! We are eternally grateful for your love for our girl then and now. I know that it might be hard to see the way from where you are now, but you’ll get through all of this, too. And your little man will be such a source of tremendous joy (when he’s not making you pull out your hair or do the peeps on the potty dance!). XO

  2. God obviously hand picked you as being the very best mom on earth for your little girl – thanks for sharing such beautiful & heartfelt words.

  3. It may be a long road, but definitely a blessed one! My life in infinitely better having known you and especially having met sweet Cass in person.

    PS Cate loves Amelia Bedelia books, too ;)

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