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
Friday, January 30, 2009
Tuesday, January 13, 2009
I've got the magic
When I was little, I loved to watch Cinderella – the Rogers & Hammerstein TV version featuring Leslie Warren. My favorite part was when she sang the song, “In My Own Little Corner” about how she could be anything her imagination wanted in that personal space. Now all grown up, I too, have such a magical space. I’ve most commonly heard it referred to as a Writer’s Cave.
At one point, my Cave consisted of a Sauder desk (complete with hutch) that I assembled myself. It has traveled from apartment to flat to my current home, where it originally bounced from a wall in the living room to a place I carved out for it in my bedroom between my lingerie chest and the bed. That's the Cave that birthed Where Souls Collide. Eventually, I relocated the desk to our unfinished basement and staked my first claim on an official writing territory.
I traded in the hutch desk for a more expansive corner unit that my oldest son helped me assemble. The hutch became a book and binder holder. I added a bookshelf and shelving unit. The patio blinds I hung to hide behind were replaced by drywall two years ago. (Ooooo!) Can You Believe in The Holiday Inn anthology was born there along with countless ideas for the Future File. And just last month I added another shelving unit to relieve, and retire, the 18-year-old hutch. In this new Cave, I've already conceived two new works in progress.
Just as educators tell parents to ensure that their children have a designated place to study, I think it’s important for writers to have their own little corner -- or Cave -- in the world.
Sure, I can write anywhere really. When pressed, my muse speaks in the car, on a plane, at my kids’ sports and dance practices, or at the park while I watch them play. I even wrote by candlelight when we lost power for two days during a recent snowstorm.
I'm sure my writing center will evolve as my craft continues to blossom. While an attic cove getaway overlooking water and trees would be wonderful, I am so cool with having this place that the entire household knows is MINE. Because when I hustle down the basement stairs, navigate the play area obstacle course before me and arrive at my softly-lit, Feng Shui-esque Cave in the corner, then, the magic begins.
Stefanie
www.stefanieworth.com
Treat yourself to Brandy's rendition of "In My Own Little Corner"
At one point, my Cave consisted of a Sauder desk (complete with hutch) that I assembled myself. It has traveled from apartment to flat to my current home, where it originally bounced from a wall in the living room to a place I carved out for it in my bedroom between my lingerie chest and the bed. That's the Cave that birthed Where Souls Collide. Eventually, I relocated the desk to our unfinished basement and staked my first claim on an official writing territory.
I had the pleasure of hearing Beverly Jenkins speak at the Macomb Book Fair and Writers Conference last year where she shared the memory of her first offices; a closet, I believe, and the space under a stairwell. Like her, I have shared my Cave with many a spider over the years. And like the once untamed West, my territory and I have settled into each other.
I traded in the hutch desk for a more expansive corner unit that my oldest son helped me assemble. The hutch became a book and binder holder. I added a bookshelf and shelving unit. The patio blinds I hung to hide behind were replaced by drywall two years ago. (Ooooo!) Can You Believe in The Holiday Inn anthology was born there along with countless ideas for the Future File. And just last month I added another shelving unit to relieve, and retire, the 18-year-old hutch. In this new Cave, I've already conceived two new works in progress.
Just as educators tell parents to ensure that their children have a designated place to study, I think it’s important for writers to have their own little corner -- or Cave -- in the world.
Sure, I can write anywhere really. When pressed, my muse speaks in the car, on a plane, at my kids’ sports and dance practices, or at the park while I watch them play. I even wrote by candlelight when we lost power for two days during a recent snowstorm.
I'm sure my writing center will evolve as my craft continues to blossom. While an attic cove getaway overlooking water and trees would be wonderful, I am so cool with having this place that the entire household knows is MINE. Because when I hustle down the basement stairs, navigate the play area obstacle course before me and arrive at my softly-lit, Feng Shui-esque Cave in the corner, then, the magic begins.
Stefanie
www.stefanieworth.com
Treat yourself to Brandy's rendition of "In My Own Little Corner"
Sunday, January 04, 2009
“Is it fear or courage that compels you, fleshling?”
I thought my favorite line from the movie, Transformers, would make a quick and easy New Year’s blog topic. And it did, for a minute.
One of the quotes listed on my Facebook profile is from a sheet of paper my father gave me when I was about 16. “The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new. Give yourself a chance.”
I can honestly say that I’ve gone beyond the chance aspect of living and changed that into an expectation. My brothers and I might call it the Worth Ethic. We simply have this expectation that if we set our minds to it, the doggone thing will happen. End of story. So fear, I presumed at the start of this blog, has no place in my life.
But it does!
I am deathly afraid of failing to try. I am certain that if I have the slightest inkling of a talent that I don’t put to productive use, the good Lord will look at me as I stand before him and say, “But why didn’t you ever. . .?” I am a staunch believer in the parable of the talents (about multiplying what you’ve been given) to the point that I’m willing to pounce on the slightest glimmer of interest in any new activity by my children.
“Oh, you think you might like to draw?” We try an art class. “Want to be like Denzel Washington, do you?” Acting workshops. “Like to shake it up?” Dance class it is. And for speed, tackling, a good arm, a strong kick, there’s been track, football, hockey, soccer, basketball and baseball. Oh and viola and trumpet lessons -- with the next household instrument to be determined. I even bought a camera for my son who (temporarily) showed a knack for great composition in impromptu photos.
Some might consider it overkill, I call it exposure. How else would Barack Obama have known he could be president if he’d never tried to be an elected official? I just want my kids to venture into new experiences without fear of failure. In our house, it’s not not succeeding that I focus on. It’s not exploring your heart’s desire, not attempting to discern your strengths and weaknesses, not learning what’s out there in the world waiting for you to find it.
As a writer, I’ve done my share of dabbling. Those things that didn’t work out get added to my Lived & Learned file. And I relish those experiences. Taking them along on this writer’s journey is perhaps one way of multiplying my gift; expanding my own mind while sharing with others.
The fear I carry is not a worrisome one that flinches at failure or cringes at condescending viewpoints. It’s more of a "Forget Everything Else And Rise!" motivator that keeps pushing me to do me best.
"Fear or courage"? For this fleshling, it’s both.
Here’s wishing you a FEEAR-ful 2009!
Stefanie
www.stefanieworth.com
One of the quotes listed on my Facebook profile is from a sheet of paper my father gave me when I was about 16. “The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new. Give yourself a chance.”
I can honestly say that I’ve gone beyond the chance aspect of living and changed that into an expectation. My brothers and I might call it the Worth Ethic. We simply have this expectation that if we set our minds to it, the doggone thing will happen. End of story. So fear, I presumed at the start of this blog, has no place in my life.
But it does!
I am deathly afraid of failing to try. I am certain that if I have the slightest inkling of a talent that I don’t put to productive use, the good Lord will look at me as I stand before him and say, “But why didn’t you ever. . .?” I am a staunch believer in the parable of the talents (about multiplying what you’ve been given) to the point that I’m willing to pounce on the slightest glimmer of interest in any new activity by my children.
“Oh, you think you might like to draw?” We try an art class. “Want to be like Denzel Washington, do you?” Acting workshops. “Like to shake it up?” Dance class it is. And for speed, tackling, a good arm, a strong kick, there’s been track, football, hockey, soccer, basketball and baseball. Oh and viola and trumpet lessons -- with the next household instrument to be determined. I even bought a camera for my son who (temporarily) showed a knack for great composition in impromptu photos.
Some might consider it overkill, I call it exposure. How else would Barack Obama have known he could be president if he’d never tried to be an elected official? I just want my kids to venture into new experiences without fear of failure. In our house, it’s not not succeeding that I focus on. It’s not exploring your heart’s desire, not attempting to discern your strengths and weaknesses, not learning what’s out there in the world waiting for you to find it.
As a writer, I’ve done my share of dabbling. Those things that didn’t work out get added to my Lived & Learned file. And I relish those experiences. Taking them along on this writer’s journey is perhaps one way of multiplying my gift; expanding my own mind while sharing with others.
The fear I carry is not a worrisome one that flinches at failure or cringes at condescending viewpoints. It’s more of a "Forget Everything Else And Rise!" motivator that keeps pushing me to do me best.
"Fear or courage"? For this fleshling, it’s both.
Here’s wishing you a FEEAR-ful 2009!
Stefanie
www.stefanieworth.com
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