My story

When she was new they kept her in the hospital NICU for seven days. Back then–back before our story filled even a single page–I couldn’t see past the hurdle of simply bringing her home. Of having her near. Like champs, though, we cleared that hurdle and only then did I look up and see countless more stacked so close I wondered how I’d have time to come up for air in between.

There are days when I feel like I’ve left it all on the track and if indeed I find a way to limp across the finish line I’ll be matted, bruised and ragged when I get there. Other days slip easily past, almost to the tune of a familiar song I can hum along with, though the lyrics escape me.

When you give birth to a child with Down syndrome they tell you this story about boarding a plane for a luxurious trip to Italy, only the plane ends up landing in Holland and instead of the Colosseum there are windmills and instead of Tuscany there are tulips. It’s a fitting depiction because if you showed me 100 bucket lists I bet nary a one would mention Holland. No offense to Holland; I’m sure it’s lovely there. I close my eyes and imagine riding a bicycle along a winding path of tulip-lined streets. But it doesn’t make me ache any less for the loss of Venice.

She turns sixteen in just over a month. Already biology has come and camped in my house like a bully, bringing with it the most cruel reminders of what cannot be. Now when I look up the hurdles seem stacked not only close together, but also vertically impossible. I’ve scheduled an appointment with the doctor because I have to ask about birth control. I have to consider the most unfathomable of injustices and the equally unfathomable consequences. We used to have the luxury of unmeasured time. Time to let life fall into place. But here we are now with life having fallen just so and time coming to call. Time’s relentless stalk leaves my breath shallow in places–leaves me sleepless on the pillow.

More than once I’ve heard it said: I could never do it. Though I don’t answer aloud in response I most assuredly think: you’ve never had to. It reminds me of a line from Chronicles of Narnia.

Not very often but every once in a great while I move the ancient boundary stone. I allow my mind to run away imagining how different it would be if–like the others–she would grow and go as part of so natural a plan. There comes at first a wistfulness and then a sort of longing and finally, acquiescence.

Child, said the Lion, I am telling you your story. Not hers. No one is told any story but their own.

I hear the news. A father dead in the ground eight months after a diagnosis–never to meet the twin girls his wife carries. Empty rafts, teddy bears and tiny bodies washing up on the shores of Greece. Students gunned down because they had the audacity to believe.

Child, said the Lion, I am telling you your story. Not hers. No one is told any story but their own.

When first I met my husband he asked me how–while parenting a child against whom the odds are so staggeringly stacked–I could believe in God. To be honest, I’d never considered it that way. To me, the question was always how someone who had met my daughter could not.

If you and I were to meet at a cocktail party one day and the hostess gave us an icebreaker question asking what is the most valuable gift you’ve been given, I wouldn’t even need to think about my answer. It’s faith. Without it, there is nothing to hold on to. No reason to bother.

I trust that one day I will walk a garden path, or maybe pedal along a tulip-lined street–with my Creator and He’ll offer me the chance to ask some whys. Until then, there is only faith that when my last page is turned, the end is only the beginning.