Sabrina

For three-and-a-half years now, I’ve wanted somehow to begin telling the story of my daughter, the challenges that she faces every day, and the inspiration that she brings to my life.

I’ll admit, it’s taken me this long to even know how to start it off properly, with words that carefully work their way through the fear and despair of the past, to show you the unequivocal joy that I feel every day I spend with her.  She is, without a doubt, a very special child.  And I feel like the luckiest man in the world to be able to call myself her father.

I don’t know how she was able to survive the incredible odds stacked against her.  Other children diagnosed with “HPE (Holoprosencephaly)”:http://www.stanford.edu/group/hpe/about/ rarely make it to birth.  About 3%, in fact.  From those that do, the prognosis of living longer than a half-year is extremely unlikely.  Sabrina has managed to do this seven times now.  Born on July 4th, 2002, she exploded into our lives like the very fireworks that bloomed over our heads.  Every day is now simply the first day of the rest of her life.

I’ll not lie to you and say that it’s gotten any easier.  But perhaps we’ve just gotten a little more durable to the incredible amount of work that it takes to parent a child with disabilities.  Even now, I listen to her slumbering breath over the monitor, waiting to drop everything if I am needed.

Developmentally, her progression has been slow.  She’s gotten longer, and leaner, a little stronger, yet still is limited to the abilities of an infant.  So, rather than push the impossible, we have adapted and learned how to watch for the nearly imperceptible achievements.  The little things that bring tears of joy, where anyone else simply sees a small hand made to fist.

As much as she’s affected all of our lives, I can’t imagine what it must be like for her older brother.  Jesse is six now, and I’d swear that he’s smarter than any kid in his class, if I knew them well enough to say so.  He’s a wonderful kid, and loves his baby sister deeply, even if he doesn’t yet understand why she can’t play in the same ways that he can.

If you, or anyone you know, is expecting a child, do not ever fear the chances of something going “wrong”, as much as something going “right”.  Children with disabilities can change your life in ways that you’ll never understand until it happens.

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