A long road begets bumps.
Note: After many months with the Kid all up in my bizness, he's been gone for a week. And -- duh -- I miss him.
What Happens After Suburbia Happens
To a Girl Who Thought
It Would Never Happen to Her
A long road begets bumps.
Joyce Maynard wrote an article for the New York Times "Modern Love" column (which is one of my favorites) a long while back (2009!) in which she talked in detail about her grown daughter. Her daughter responded in turn and the whole thing is played out here.
After giving a toast at the wedding of my cousin this weekend, a toast that I cannot repeat because I had one of those out of body moments that public-speaking inspires and so I can not remember anything I said (except for forgiving my cousin for being born) (I know? What?), my trusty little phone beeped a message at me. I was sure it was from someone in the wedding party wanting to offer me a nationwide motivational speaking tour, but it wasn't. It was from this nice lady Susan at 5 Minutes for Mom who shared this with me:
There's me and Carolyn, acting typically um typical. And this? This was the fifth attempt because the cameraman who I affectionately kept referring to as Jacques (not sure why) was having battery issues. And maybe there were swear words. Maybe.
Her face lined but more perfect than it was back then, different in a better way, better than our yearbook pictures, different in the way she looked after college, after Him. So much more different is her face: it shows, looser now. Better.She pours my drink. She looks me in the eye. I am grateful.
She sits beside me. Her face, her body so much smaller that it was back then, but her voice? It's always truth when she speaks and I find comfort in her all the time. I hold her son's hand and I get zen: this is her son. Hers! I feel lucky and luckier still.
She knows this much.There is some meaning here bigger than feeling yummy good with old friends, and I hope you find it and whoa! maybe write it yourself.
My right eyelid's been doing this effed up twitching thing for what? five days now. I don't dare google it. I remember when my mom ventured onto the 'net (for the first time) to find a cure for my cousin's infant's problems: "swallowing and sucking" she typed in. Even now, I can still feel the burnt-red on my mother's cheeks.
While mopping and swiping and cleaning windows, while hauling four loads of laundry, while hand-washing sweaters, and debating Halloween costumes with Short Drunks (I insist on home-made; they want otherwise), and while defrosting a pork roast that I will not want to eat, ever ever ever: I imagined the death of a girl.
My current obsession: scarves. Not the silky kind, not the wooly kind, but the kind that's mildly bohemian. With the cool colors and the danglies and stuff. Not sure why I am so obsessed but I think it makes me feel um "dressed"when I sling one around my neck, maybe more grown up and dare I say, looking like I might give a shit?
Kevin of Always Home and Uncool has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife's birthday, and so...
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 at www.curejm.org.
To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.
Things You Can Count On, Vehicles: