Saturday, September 12, 2009

September is Sickle Cell Awareness Month

After my second son was born and diagnosed with Sickle Cell Anemia, I joined an online group of special needs moms for support. I remember us passing around emails in those much earlier days of the internet, one of which was about how we were chosen to be mothers to these children for God's own reasons. While I clung to that belief at the time because so much uncertainty awaited us, I understand that poem much better now, 12 years later.

I'm lucky to be chosen as the caretaker of a terrific kid with an awful disease. I see and nurture the strength in him that I know he'll need when I'm no longer able to escort him into a doctor's office and speak on his behalf. The disease has developed character and advocacy in me I didn't know I had, but I still want it cured.

We had an awful spell around Memorial Day when he was hospitalized for the first time in almost two years. We're fortunate that he does not experience daily pain episodes like some children do, that he's only had one transfusion -- preceding removal of his tonsils and adenoids at two -- and that he's been stroke-free. But, boy, a few months ago. . .well, it still makes my breath catch in my chest and brings tears to my eyes.

Sickle Cell isn't as media-sexy as childhood cancer or pediatric AIDS, but it hurts. And to see your child unable to walk or move because it hurts so bad, to watch as another dose of morphine doesn't make it better. Oh, my dear God. I cannot tell you what that is like as a mother. I even had to pause in writing this to try and shake off the memory.

But I tell the story because there is kinship among those of us who share this difficult walk with our children. And kinship among those who've watched their children grow up with this disease and now worry about whether or not they'll find mates who understand and provide them with the support they need, and whether or not the disease will be passed to grandchildren and beyond.

As a global village, we all have parts we can play in eradicating this disease that afflicts one in nine African Americans as well as people of Greek, Italian and Middle Eastern descent (and others, too). My role is to write about our experiences and donate to the cause. Researchers are so close to a universal cure and I want to believe with all my heart that when my son is grown and finds a good woman to be his wife that passing on this disease to their children will not be the issue it is today. Let's hope, pray and act today.

To learn more about Sickle Cell, visit the Sickle Cell Disease Center of America.
My essay about The Baby God Gave Me

Please join us for the Sickle Cell Health Awareness Fair on Saturday, Sept. 19th, from 5:30 - 9 p.m.at the Boll Family YMCA (downtown Detroit). There'll be hustle lessons, food, fun and education. Tix are $20. Call 313-864-4406 for info. I'll be there signing books and spreading hope for a cure on behalf of my son.

Stefanie
http://www.stefanieworth.com/
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