Posts Tagged ‘411’
I would be remiss if I didn’t share our Halloween memories with you. And I do not care to be remiss. No, not at all.
The last one was a neighbor that had Muppet music blaring from his home. There was another neighbor, an attractive young mom, whose costume could best be described as SpongeBoob NoPants, but I was so appalled that I forgot to take a picture and then when I went back and banged on her door at 3am the cops said I had to go home. The nerve of some people.
And now for a few favorites from Halloweens past:
Here’s hoping that you and yours had a good time and that your teeth don’t rot out. Also, Merry Christmas. Apparently.
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.
Thanks for sharing, Kevin.
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 blond 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.
I’m filling in for Jason today over at ManTime. If you like your cursing to be filled with Zanger and dad-talk, come check it out! The show is on at 11am (PT) and will be available on podcast shortly thereafter.
And since this a poor excuse for a post, here are some things I’ve been doing on these here internets:
A bunch of stuff at UpTake.
My part at Polite Fictions.
FameCrawler can always use your clicks. That’s how the kids eat.
Then there was Twitter…
And here are some pictures Atticus took:
You are in your bed right now. You are finally asleep after a wild tale of wild things, a glass of water, several threats and one last hug and sugar. Your little brother is still awake in the bed across from you. I can hear him singing into the flashlight that he thinks I don’t know about.
There are lights turned low. Your mother is watching television. I am sipping a beer by candlelight and listening to music that makes people cry.
You should know that I’m a melancholy fool and I always have been. You’ve probably figured this out by now, even if you don’t know what melancholy means.
A year ago was a milestone and suddenly you’ve leaped to another one. Life is funny like that. Milestones happen.
We are in a new town. A new state. You were born here and so you’ve returned. The school is new, too. It’s your old school turned inside out to protect you from the rain. The bricks are the same color as those you remember. The bathrooms all smell the same.
You seemed so little then. You seem too big now. You have outgrown everything except hugs and sugars. You are sweet like that.
You are smart and kind and so funny it’s dangerous. You are going to find yourself in a lot of trouble and it will be your mouth that gets you there. You got that from me. Also, my eyes. Your smile you got from your mother.
Tomorrow is the first day of first grade. Tomorrow is a new chapter and the adventure is yours for the choosing. Don’t always take the easy way.
Tonight is full of wind in the trees and dogs in the distance and piano keys bouncing off the living room walls. Tonight is the quiet before your storm.
But it’s not really that quiet. We have hatches to batten down, strong and deep, and milestones to go before we sleep.
Milestones to go before we sleep.
Give them hell, Kid.
In case you missed my grown-man crying about kindergarten:
All He’ll Ever Need to Know He’ll Learn in Kindergarten
The Boys of Summer are Gone
In Other Words, Hold My Hand
Me and Atticus Down by the Schoolyard