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/
Showing posts with label sickle cell disease. Show all posts
Showing posts with label sickle cell disease. Show all posts
Saturday, September 12, 2009
Friday, January 30, 2009
In a world 40 years ago my son probably wouldn’t be here
At one point in time, the average life span for people with Sickle Cell Anemia was twelve years of age. Today, my younger son has hit that milestone – and not without a whole lot of reflection and praise from me.
Thank you, Lord!
Mine is a quiet spirituality that has carried me through the difficult reality of raising a child with an uncertain prognosis. When I began doling out medicine droppers filled with prophylactic antibiotics when he was two months old, I did so out of duty (the doctor insisted), obligation (this is my child to care for) and, okay, trepidation (what if I don’t?).
A couple of years ago, I wrote a lengthy and cathartic essay about our journey with Sickle Cell Anemia; the hospitalizations with their umpteen pokes, the threats of being fired for being off with him too much, the anger with a teacher who decided to treat a 104 degree temperature and day-long pain by telling him to get a drink of water instead of calling me as instructed.
If I sounded a little ticked in that last line, it’s because I still am.
The emotion is as much anger with that type of ignorance as it is disappointment with a scientific community that still hasn’t defined a CURE for this disease. It’s one of the oldest (if not the oldest) known genetic conditions. And it took how many years for someone to figure out that one teaspoon of penicillin a day could extend these lives to near “normal” length? Come on now.
Today, what we have are bone marrow and stem cell transplants. But because of what the procedures require, both are reserved for the most severe cases: children who have strokes and other debilitating complications. My sweetie is not quite sick enough, it seems, for that morsel of wholeness.
Stem cell transplants are much less invasive, but not yet widespread – reserved still for those who are most ill. Our hematologist, Dr. Wanda Shurney of Children’s Hospital of Michigan, once told me that she believes that his Sickle Cell Anemia will no longer be an issue for him by the time he grows up; that science will have refined the technique to make the transplants more accessible to all those who need one.
He sure can.
Till that fine day arrives, let’s donate, support the research, know your genetics, and say a little prayer for my son and the thousands of children like him. Please.
Happy Birthday, Sweetheart!
Mom is so glad you’re mine.
Stefanie
www.stefanieworth.com
For more info:
The Sickle Cell Center at Children's Hospital of Michigan
Sickle Cell Disease Association of America
Michigan Citizens for Stem Cell Research and Cures
Sickle Cell Camp
Thank you, Lord!
Mine is a quiet spirituality that has carried me through the difficult reality of raising a child with an uncertain prognosis. When I began doling out medicine droppers filled with prophylactic antibiotics when he was two months old, I did so out of duty (the doctor insisted), obligation (this is my child to care for) and, okay, trepidation (what if I don’t?).
A couple of years ago, I wrote a lengthy and cathartic essay about our journey with Sickle Cell Anemia; the hospitalizations with their umpteen pokes, the threats of being fired for being off with him too much, the anger with a teacher who decided to treat a 104 degree temperature and day-long pain by telling him to get a drink of water instead of calling me as instructed.
If I sounded a little ticked in that last line, it’s because I still am.
The emotion is as much anger with that type of ignorance as it is disappointment with a scientific community that still hasn’t defined a CURE for this disease. It’s one of the oldest (if not the oldest) known genetic conditions. And it took how many years for someone to figure out that one teaspoon of penicillin a day could extend these lives to near “normal” length? Come on now.
Today, what we have are bone marrow and stem cell transplants. But because of what the procedures require, both are reserved for the most severe cases: children who have strokes and other debilitating complications. My sweetie is not quite sick enough, it seems, for that morsel of wholeness.
Stem cell transplants are much less invasive, but not yet widespread – reserved still for those who are most ill. Our hematologist, Dr. Wanda Shurney of Children’s Hospital of Michigan, once told me that she believes that his Sickle Cell Anemia will no longer be an issue for him by the time he grows up; that science will have refined the technique to make the transplants more accessible to all those who need one.
He sure can.
Till that fine day arrives, let’s donate, support the research, know your genetics, and say a little prayer for my son and the thousands of children like him. Please.
Happy Birthday, Sweetheart!
Mom is so glad you’re mine.
Stefanie
www.stefanieworth.com
For more info:
The Sickle Cell Center at Children's Hospital of Michigan
Sickle Cell Disease Association of America
Michigan Citizens for Stem Cell Research and Cures
Sickle Cell Camp
Tuesday, September 04, 2007
In recognition of Sickle Cell Awareness Month
I've decided to share my family's experience with Sickle Cell Disease. To learn more, visit the Sickle Cell Disease Association of America.
The Baby God Gave Me
“That boy’s going to be a pistol!”
Mom’s response to my unborn son’s refusal to remain head down summed up our shared personality prediction. Estimated at over nine pounds and still breech at 38 weeks, his fetal stubbornness was just a preview of the challenging personality he'd bring to the world. Born a few weeks later at a very healthy 9 lbs. 15 oz after day-long labor and (finally!) a C-section, Pistol Punkin a/k/a Ethan* and I eventually made it back home where life settled into its new normal.
We enjoyed our daytime aloneness, growing and bonding in our own special way. On one of these “all- is-now-right-with-the-world” afternoons, my boyfriend dropped by for lunch --nothing elaborate, just a Big Mac and fries with Young & the Restless humming in the background. I glanced out the window behind us to see that the mailman had just arrived. But instead of the sound of mail sliding through the chute, he rang the bell.
“It’s another present,” I thought.
What the mailman brought that day was a certified letter from the Sickle Cell Disease Association of America--Michigan Chapter. I assumed the communication was a formality, informing me that my newborn carried the Sickle Cell trait like me and his older brother. Cold words from the form letter informed us that our baby’s newborn testing had revealed “a sickle cell condition,” there was a doctor at Children’s Hospital of Michigan prepared to care for our now ten-pound baby, and counselors were on hand if we should “need additional information.”
The mailman brought our whole world down around us.
The story continues on my website
The Baby God Gave Me
“That boy’s going to be a pistol!”
Mom’s response to my unborn son’s refusal to remain head down summed up our shared personality prediction. Estimated at over nine pounds and still breech at 38 weeks, his fetal stubbornness was just a preview of the challenging personality he'd bring to the world. Born a few weeks later at a very healthy 9 lbs. 15 oz after day-long labor and (finally!) a C-section, Pistol Punkin a/k/a Ethan* and I eventually made it back home where life settled into its new normal.
We enjoyed our daytime aloneness, growing and bonding in our own special way. On one of these “all- is-now-right-with-the-world” afternoons, my boyfriend dropped by for lunch --nothing elaborate, just a Big Mac and fries with Young & the Restless humming in the background. I glanced out the window behind us to see that the mailman had just arrived. But instead of the sound of mail sliding through the chute, he rang the bell.
“It’s another present,” I thought.
What the mailman brought that day was a certified letter from the Sickle Cell Disease Association of America--Michigan Chapter. I assumed the communication was a formality, informing me that my newborn carried the Sickle Cell trait like me and his older brother. Cold words from the form letter informed us that our baby’s newborn testing had revealed “a sickle cell condition,” there was a doctor at Children’s Hospital of Michigan prepared to care for our now ten-pound baby, and counselors were on hand if we should “need additional information.”
The mailman brought our whole world down around us.
The story continues on my website
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