Tuesday, October 09, 2012


As we go along, hand in hand with the extra chromosome through the ordinary paths of our lives, we hear whispers from other pathways.

"It makes me feel guilty that God didn't give me a child with Down syndrome."
"I can't see the gift of imperfection in my child's life.  It's not that easy." 
"Kellie Hampton makes it all too rosy, too happy.  She glosses over the difficulties."
"You, obviously, have access to all the resources you need.  Other families aren't so lucky.  What about them?"
"The way of acceptance is weak.  I will never accept; I will fight for my child." 

To you who feel these ways, we are listening.

Amy Carmichael has said: "Remember our God did not say to me, 'I have something greater for you to do.'  This life is not greater than the other, but it is different."

We are not all at the same place on our journeys; I often think of the fact that when Wade was less than two months old, the National Down Syndrome Convention was held in Atlanta, a scant 150 miles from us.

Now I know what a treasure was available there: resources and families, experts and novices, all at brain's length from what we needed to know.  But then, I felt too shell-shocked even to consider attending.

It took all the nerve I had to make it to the first support group meeting when Wade was several months old.  Nevin was much better at searching out information and acting on it; there still seem to be holes in my memory from those first weeks--doctors, diagnoses, and darkness all blurring together, only pausing to stretch out the long moments of uncertainty before hurrying into fast forward again.

What I would have done without Nevin to piece it all together for me, I don't know.  It wasn't that he didn't feel the same way.  But he was able to handle it differently.  His strength was there for my weakness.

And therein, for me, lies the beauty in hearing the aspects of different journeys.  God doesn't require us all to process life in the same ways.  And as we listen to another's viewpoint, our own world is stretched in ways that enlarge our hearts forever.

I like to think it's a bit like these pictures:

Not laughing while you're still crying,

but pausing to listen...

and then leaning in to say, "I hear you and I care..."

The wisdom of the Magi is the greatest of all wisdom on earth, because it knows its own ignorance.  And that is the secret of power.
...And in that thought, accepted and embraced, there was peace.  It was not resignation.  It was not submission.  It was something more profound and searching.  He knew that all was well, because he had done the best that he could from day to day.  He had been true to the light that had been given him.                         --Henry van Dyke from The Other Wise Man

For more reading, click on the link to Gillian Marchenko's thoughtful essay entitled "For Parents Who Aren't Ready to Celebrate Down Syndrome".

1 comment:

Me ;-) said...

Great post! Respect, instead of judging, the journey.