Friday, June 13, 2014

No Footprint So Small

"How long ago was this?" the man next to me at the bar asked about Gabriel's birth and death.
  I was at Amestoy's to speak with the bartender, Jessica, about advertising Gabriel's Magic Mullet Run.  The fundraiser will benefit Duke University Molecular Physiology Institute's research study of anencephaly.

"He would be three in June."

"And you're still on this?"

"What do you mean?"

"You're still working on this condition?"  He kept looking at the wallet-sized picture of Gabriel that accompanied the sponsor request letter.

I find that people are frequently in awe of my efforts towards research.  It's a feeling that you have to experience to understand, but it's an experience I wouldn't wish on anyone, which is exactly why I continue raising funds to find a cause, and perhaps someday a remedy or at least something beyond palliative care for babies with anencephaly.  Until you've lost your child to the condition, you can't understand the burning desire to protect even one more family from that grief.  Until your child dies before he can walk, talk, run, or write you can't understand the fervent hope that he will be remembered although his time on earth was short.
There is no footprint so small that it cannot make an imprint in this world.

I'd heard the above platitude many times before it applied to my son Gabriel.  It was nothing more than a platitude until my son started leaving his footprint all over the world.

The motivation to honor his memory, broaden awareness, and promote research isn't just something that lives in me.  I've been inspired by the women who have shared this experience with me.  Missy Axt, after the birth and death of her daughter Grace Mary, makes items for NICU babies and does presentations about anencephaly.  Jenny Lees, Palmer Joseph's mother, knits caps for NICU babies, and promotes organ donor awareness.  Bethany Conkel, mother to Amalya Nathaniel, is also tireless in her efforts to raise awareness of infant organ donation.  Amy Hale creates memorial memes for other anencephaly moms, after her daughter Makenna was born with anencephaly.  And Kelly Alvstad,  whose son Andrew Layne also lived for ten days, does fundraising for the March of Dimes.

Each of us have been inspired by the woman who has done the greatest amount of work towards anencephaly awareness and support for families who carry to term, Monika Jaquier.  Monika's daughter Anouk was born with anencephaly nearly 14 years ago.  Monika lives in Switzerland, and when Anouk wa diagnosed Monika learned there was very little support for families who carry to term, and a tremendous push to terminate the pregnancy.

Monika Jaquier created the network of support that led Missy, Jenny, Kelly, Amy, Bethany and I together through the adverse diagnosis of our children.  These women met their adversity head-on.  I want to be like these women when I grow up.

My motivations are also slightly selfish.  This time of year surrounding Gabriel's birth and death can be very bittersweet.  The stillness can bring out the bitterness.  It helps to have something to focus on, something to work towards, something that makes me feel like I'm fixing things because I couldn't fix my little boy.

Tomorrow is Gabriel's Magic Mullet Run.  The mullet theme was inspired by the movie "Joe Dirt," about a man born with a piece of his skull missing.  Joe was given a mullet wig, which fused to his head and protected his brain.

I wish it were that simple.  I wish Gabriel could be here with me now, rockin' a mullet.  But since he can't be, I've done my best to get as many people as I can to rock that mullet for him, in hopes that one day we can find the real-life remedy.

Tomorrow friends, family, and local runners will leave footprints in the trails at Rio Bravo Ranch in Bakersfield, because a little boy was born with anencephaly and left his footprints in this world.

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