Tuesday, March 20, 2012

World Down Syndrome Awareness Day

Nothing in life is easy or simple with me. Because tomorrow is not only World Down Syndrome Awareness day, in honor of 3/21, 3 copies of the 21st chromosome, tomorrow is also my brothers birthday.

And most people would say - wow that's great - what a special day for uncle and nephew to share.

The thing is, my son has never met my brother, he committed suicide when I was six months pregnant, about a month after I received the DS diagnosis.

And so for the last four years I have neglected to celebrate March 21st. For the last four years I've been sad about the fact that Seth never met my brother Chris, I've been angry for the last four years that my brother shared such an important day in the life of my son because I think my son deserves at least this much - a day of his own.

The same goes for my family. I can't call my mom and ask her to wear her blue and yellow or my sisters or my remaining brother - I can't tell them to be celebratory and choose to pick happiness that day over sadness about our brothers departure from this Earth. It wouldn't be fair to ask them to make that choice.

This year I don't want to think about my brother. I don't. Therapy has helped tremendously in venting all of my feelings and thoughts surrounding his death and I think I'm done, I think I'm not going to let him rent negative space in my head. I'll just remember that he was my brother, once upon a time, long ago, and that that part of my life is over and a new part has begun.

I'll never forget him, he's my brother, but we had a very complicated non-relationship. We weren't close and although I do miss him, I feel more grief that the rest of my family is suffering, rather than having that sadness coming from my loss. I think about my son and nephew loosing an uncle and that saddens me tremendously as well.

But this post is about tomorrow - not tomorrow my dead brothers birthday - tomorrow World Down Syndrome Awareness Day - a day to celebrate my son and his proverbial brothers and sisters all over the world. A day to celebrate all those kids with those lines across their palms, beautiful almond eyes and the best smiles ever.

And I'm sure tomorrow I will remember you brother and think of you, I can't not because you are still in my heart, but I'm not going to wallow in grief or sadness or anger. I can't do it anymore. I'm going to celebrate my son, my Seth, my life now. And I'm going to be happy.

A poem in honor of my son

I didn't know.

didn't know about your almond shaped eyes,

button nose,

the space between your toes.


I didn't know.

didn't know that you were more the same

than we thought you different.

about your personality outshining the 47 pieces.


I didn't know.

didn't know that I had hurt others with my ignorance,

that I didn't think before I spoke

didn't know their pain til I felt it myself.


I didn't know.

didn't know that I'd love that line across your palm,

the space I kiss between your eyes,

the rosy red of your cheeks.


I didn't know.

didn't know that I would fight for you,

wipe tears out of my own eyes,

to prevent future ones in yours.


Now I know.

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