On Life vs. Life-As-You-Expected

Every so often I write a note to parents who have just received the diagnosis that changes everything.

Down Syndrome
Cerebral Palsy
Autism
Deafness
Blindness, forever

How can I explain the infinitude of this moment? Everything before those words is one way.  Everything after them is another.

Infinite things happen in that infinite moment. Numbness and rage sit side by side, no regard for the conventional reason which says they can not coexist. You have infinite thoughts in that moment. Infinite fears.

She will never run. She will never play hide-and-seek. She will never color. She will never dance. She will never marvel at the stars.

Dear parent reeling from having experienced infinity in a moment,

I am so sorry. The death of everything you thought you knew, the death of everything you didn’t know you were hoping for – those are deaths. They aren’t to be brushed aside with “It could have been worse,” or “She’ll do great things anyway!” Life-as-you-were-expecting-it has died. Your grief is so real.

But life is so much richer than life-as-you-were-expecting-it.

This is the horrible, beautiful truth. I hate it, and I am grateful for it way down deep in my bones.

This morning, my daughter performed in a school play. She memorized the choreography, her classmates helped her on stage, and she danced her little heart out. I cried, of course, because of this truth: my life is better than life-as-I-expected-it.

It’s harder in every single way - but it’s better, too.

Parent, now that your life is moving in a new and unexpected direction, you will meet the strongest people on the planet: those with special needs and the moms, dads, brothers, sisters, teachers, doctors, and specialists that love them. There is no more passionate, more determined, fiercer, more inspiring group on the planet. You’re in the club now. In the trenches. You will bear witness to miracles.

You will also become a better version of yourself.  You will be more aware, more compassionate, more of an advocate, more hopeful, more organized, and more relentless. You will be you, 2.0.

You will have opportunities that you couldn’t have dreamed up in one million years. They will come in the form of conversations and friendships, and they will fill you to the brim with gratitude.

It will be different, but it will not be bad.

It will be hard, but it will be good.  It will be so, so, so, so good. 

Darling, do not fear what you don't really know. 

 Madeline is in the front row, second from the left. You know, the one straining her neck and voice and lungs. This surprises nobody. She is clearly FEELING IT. 

Madeline is in the front row, second from the left. You know, the one straining her neck and voice and lungs. This surprises nobody. She is clearly FEELING IT.