Thursday, August 03, 2006

Embracing Opportunity

Samantha* is a seventeen year old girl with Spina Bifida in the end-stages of renal failure. She travels over 200 miles one-way twice a week to receive hemo-dialysis. Her live expectancy is very short.

She is also one of the sweetest, most cheerful people I have ever had the pleasure of knowing. Big-hearted and sincere, her smiles are infectious, her words are tinged with wisdom that comes from having to live too hard too soon, and she is tempered with complete acceptance and peace as to who she is. Truly, she is another hero of mine, and certainly an inspiration to all who have met her.

Born with the same birth defect as my daughter, they formed a bond very early in Em's life. In fact, Sam is probably the friend she's had the longest. They've always shared laughter, and have had wheelchair races when Em was confined to hers, and Em has pushed Sam around when she was able. Sam, you see, has never taken a step in her whole life, being paralyzed from the waist down. She also weighs a whopping 50-ish pounds and is not much larger than my notably small six-year old. But you've never met a more determined girl.

She's been before Congress lobbying on behalf of the Spina Bifida community. She's a long-standing ambassador for Children's Miracle Network as well as one of their miracle children. She is an advocate for the disabled community as a whole, and is as involved in her education as she is in her volunteering. Yes, Sam just completed her junior year of high school.

I asked her once why she was so committed to her education, considering her prognosis, and she said something brilliantly akin to "because I intend to live much longer than anyone else does, and I need my education." Wow. Draw your own conclusions as to her character, work ethic, and drive.

Sam only has one working kidney, and now it is in end-stage failure. It is the gravest fear of every parent of a child with spina bifida. They just can't do anything about kidney failure. It's certainly Em's Kryptonite.

But Em walks (with assistive devices). She can move even her toes, if only a little. She can do what no one told me she could. They told me to expect a child with the physical abilities of Sam. You want proof of miracles? Samantha and Em share the same birth defect to the same vertebral degree. What I mean by this is that they both had a myelomeningeocele at the L3, L4 level. They should have been identical in abilities. My daughter, too, should've had a "short-life expectancy" prognosis. My tears for Sam should be as guilt-ridden for tears for my daughter as they are sad for Sam.

Somehow, by some miracles, my daughter is almost unscathed by comparison. Or maybe I just take her relative health for granted. Probably both.

It's easy to forget that life is disturbingly fragile at times. Given an "Em should be able to live well into adulthood" prognosis, which really means only that she should survive 18 by a few years, but no guarantees that she'll live into her 30's, 40's, or beyond, I am allowed a cavalier attitude that I do not deserve. But Em does. And so does Sam. I cannot control either of their fates, but I can embrace life as it has been offered to me and hope that I can learn from Sam as to how to live life to its fullest, making something special out of what we are offered. I hope we all can.

*Samantha's name has been changed to protect her identity.

1 comment:

Anonymous said...

I would love to know where you are getting the, not so great, prognosis for your daughter. I'm not exactly sure of your daughter's age but I get the impression she is much younger than I. I have same level as your daughter and have already made it to 37 years. It still amazes me the poor pictures parents are still being painted for their children born today...or net yet born children. I have been working full time since I graduated with my associates degree and do not have plans to slow down anytime soon. I'm married and am helping to raise and 8 year old. I'm very involved in my community by volunteering with my church, hospital and anything else I can get my hands on. I understand that everyone with the same level is not the same but not believing that your daughter can have the same life expectancy as anyone else is crazy.

I'm starting to believe that my family genetics for cancer will most likely be thing thing to take me out "before my time". I had a grandmother die, at age 43, from breast cancer and lost my mother, at age 49, to colon cancer. That is what scares me....not Spina Bifida.

If you haven't already, you need to take a trip to one of the National Spina Bifida Conferences that are held every June. You will see so many that are living into retirement. By the way, the chairman of the board is a grown man with Spina Bifida.