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Shook is how I feel when I hear that someone who radiates life is struck down in the prime of her life.
I’m too shook to really write much except to say that she’s been on my mind since I heard the terrible news.
She has such a long road ahead but so much to live for, especially three beautiful children.
Fight hard, Anissa.
You can learn what happened and read updates here.
And, if you can help her family get through this, please click on the link in my sidebar.
Three years ago on October 9, 2006, I hit publish and started this blog. Thanks to all of you who have come along for the ride!
Here is the post that started it all:
Pleased to meet you. I’m Practical.
It happened one night at a bar (you’ll see that many of my posts will begin like this). I had just finished my third Woo Woo of the night. I was bouncing merrily off the crowd when a guy friend came to me, draped his drunken arm around my shoulders and purred into me ear, “Someday, after I’ve found the girl I’m going to marry, I’m going to make sure she meets you. You are so practical, you can teach her to be too”. (ok, I’m sure the wording was a bit different, but give my tired brain a break; I’m lucky I can remember much from my 20’s).
I looked at him with wide, terrified eyes and backed away until I had bumped off enough people to land in my roommate’s lap. I then cried, “PRACTICAL?!?!? I’m doomed! I’ll never get married! Guys don’t want PRACTICAL! They want cute and sexy and fun!” She probably suggested we get another Woo Woo (God Bless You, Sharon).
Of course, deep down, I knew it was true. I always went to the library before hitting the bars. I wrote my research paper notes on index cards so that everything was organized. Our off-campus apartment was spotless. I was dependable; I was a
Friar.Shoot forward many years and, yes, I did find a nice, fun, adorable man who thought, “cute, sexy, fun AND practical!” And then we got married and now have three cute, fun and practical kids (no sexy, never sexy). I kind of like ‘practical’ now. It sounds so safe and comforting. And, while it still reminds me of flat dress shoes, one-pot meals, stain-resistant pants and savings plans, those things now hold a special place in my loud, frazzled, messy life.
“I wish I could take away your pain”, I thought tonight as I hugged my little guy after he wacked his head against the door to his bedroom. Whenever the kids are hurt, or sick, or sad, I wish I could take away their pain and make things better.
I can only imagine how it feels to be a parent of a child whose “hurt, sick, or sad” doesn’t go away with a few kisses and a little TLC. I can only imagine how frustrating it is to go from doctor to doctor, looking for answers, all while your child is not getting better.
Someone who can imagine this is Kevin, the super-cool blogger at Always Home and Uncool, who asked if I’d help spread the news and raise awareness about a disease that has hit too close to home. His daughter has juvenile myositis, a rare autoimmune disease that she was diagnosed with on this day seven years ago.
The day also happens to be his wife’s birthday. Please read his family’s story.
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Our pediatrician admitted it early on.
The rash on our 2-year-old daughter’s cheeks, joints and legs was something he’d never seen before.
The next doctor wouldn’t admit to not knowing.
He rattled off the names of several skins conditions — none of them seemingly worth his time or bedside manner — then quickly prescribed antibiotics and showed us the door.
The third doctor admitted she didn’t know much.
The biopsy of the chunk of skin she had removed from our daughter’s knee showed signs of an “allergic reaction” even though we had ruled out every allergy source — obvious and otherwise — that we could.
The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.
She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:
The rash across her face and temples resembling the silhouette of a butterfly.
The purple-brown spots and smears, called heliotrope, on her eyelids.
The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.
The onset of crippling muscle weakness in her legs and upper body.
She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.
This was her gift — a diagnosis for her little girl.
That was seven years ago — Oct. 2, 2002 — the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.
Our daughter’s first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn’t tip over, as medicine or nourishment dripped from a bag into her body.
Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.
What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don’t know.
I do know that the fourth doctor, the one who brought in others to see our daughter’s condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.
That, too, is my purpose today.
It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.
To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation.
To make a tax-deductible donation toward JM research, please go to Megan, Rhonda and Kevin’s Cure JM page or to the Cure JM donation page.
Christina is a married, homeschooling, part-time working mom to three children in Southeastern Massachusetts. She's funnier on Twitter than in real life, unless she's had a drink. You can email her directly at fairlyoddmother@inbox.com.
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