By Diana Early, PT, PhD
We didn’t understand when
the doctor said “I’m sorry,”
the day you were born.
It didn’t matter to us.
You were our beautiful baby.
One extra chromosome made
no difference. We vowed
to give you the best
whatever your best looked like.
Then our fight began.
First came the fight for you to move
to crawl—to walk—to run.
What others took for granted,
did without effort, we practiced
for hours, coaxing, cheering, hoping.
Each milestone reached with the help of a village.
We fought for you to talk
with exercises, signs, motions
encouraging words, demanding words,
waiting for sounds to come.
Words came, then sentences,
and we rejoiced. And we longed
to understand you better. We longed
for others to enjoy what you had to say.
We fought for education.
We believed you had potential
when others doubted, believed
you’d be “Better off in a special classroom.”
We believed they had written you off.
Every year a meeting. Compromise always won.
We left crying, sometimes fuming, knowing
we knew you best.
We fought for your future.
We wanted you to have purpose.
So we fought to help others see
what you could bring to the workplace.
Sometimes we wanted to quit
But we couldn’t. You meant too much.
Small victories came. There were some
who gave you a chance.
Then the fight ended.
We had to return you to your Maker.
We fought back the tears
The world fought off the sorrow.
You gave so much to so many.
Now we fight to fill the gap
and vow to keep your joy alive
to help others fight the fight.
For Zach and Austin
I wrote this poem as an outgrowth of my clinical practice as a physical therapist and my qualitative research including parents of children who have Down syndrome. Recently, I had two adult friends with Down syndrome pass away suddenly and unexpectedly. This poem served as a way to process grief over the untimely deaths of these friends.