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Sunday, May 3, 2009

For Ethan and Niki...

I often wonder what life would be like if Ethan were here today...

He'd be one year old.
FVII would mean nothing to me.
"Fly Like A Bird" would merely be another song they play during Communion.
Holy Angels would still only be the name of a church and not also the name of a section at the cemetery.
Niki probably wouldn't be here.

So the question is, if I could, would I change a thing about life as I know it?

Honestly, probably not. Losing Ethan has been devastating, but who am I to wish for something that wasn't meant to be? This was our destiny. He was meant to leave this life just as I was meant to miss him for the rest of mine.

I cling to his memory because that is all I have left. I miss him every day, but losing him has inspired me. I desperately seek answers for Niki because her only direct connection to FVII Deficiency is with a beautiful boy who now resides in heaven. Sure there are two other women that we've connected with so far, but their experience with this condition happened before the blessing that is NovoSeven. Niki really only has Ethan at this point. She needs a friend to grow up with. And maybe, someone out there does too! Maybe there's another mom like me looking for the same thing for her daughter or son. It could happen.

Aside from blogging about the craziness of day-to-day life, I hope that the gods of Google will connect us with another family, another infant or young child, with FVII Deficiency. Somebody out there has has got to be Googling this! Niki can't possibly be the only person in recent history born with this condition. It's a damn shame there isn't a support group for it. The internet is a powerful tool and I intend to use it. Maybe my tiny little speck on this galaxy that is the internet, will shine bright enough to help others like Niki find their way. Or maybe I'm just a dreamer. :-) Either way, it can't hurt.

From this point forward I will start or end most, if not all of my blogs with the name of her medical condition. Hopefully a simple phrase will connect us with people out there who are just like us.

So here it is...for Niki:

FVII Deficiency
Factor VII Deficiency
Factor 7 Deficiency
FVII Deficient

If you have this rare bleeding disorder, message me please!!!!

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