...for a different kind of girl

silent surburban girl releasing her voice, not yet knowing what all she wants to say about her life and the things that make it spin. do you have to be 18 to be here? you'll know when i know.

Friday, October 02, 2009

because he asked nicely, but mostly because he's made of awesome...

For the past two weeks, I've been listening to my youngest son restlessly attempt to sleep when not having his rest interrupted by coughing fits that make me hurt just to hear. He's exhausted. I'm exhausted. While trying to help him, I'm also attempting to fend off the first hint of a seasonal cold I knew was going to attack my immune system when I walked through a fine mist of germs upon entering the children's department at work. My Tool Man is hoping all the vitamin C tablets I'm ingesting work their magic because I may have a bit of a whining problem when I'm sick, the type that I do not doubt makes him question that whole "In sickness and in health" bit from our wedding vows.

But this is not about me and my woe is me headache today. This is about my friend Kevin of Always Home and Uncool. Last month, Kevin hatched an amazing plan to take control of the Internet, and in using the power that type of thing provides, he commanded (nay - asked) his friends and fellow bloggers if they would publish the following post today as a way to help his family in their effort to raise awareness of juvenile myositis, which is a rare autoimmune disease his daughter was diagnosed with seven years ago today. Friday is also his wife's birthday, and this effort is Kevin's gift to his beloved. Kevin is pretty awesome. I hope you'll read today in support of him and his family.

*******************

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.

Labels:

16 Comments:

Blogger Always Home and Uncool said...

You are six shades of awesome and peanut buster parfait, yourself. Thanks, FADKOG. Be well.

Friday, October 02, 2009 6:47:00 AM  
Blogger FTN said...

You ARE awesome, Fadkog. Thanks for posting this. It's great to hear that Megan was finally diagnosed correctly. All 9-year old girls should be able to dance and sing and play soccer.

Friday, October 02, 2009 8:23:00 AM  
Blogger Christina Lee said...

Beautiful! I'm glad to know now!!

Friday, October 02, 2009 9:44:00 AM  
Blogger Swirl Girl said...

me too!

Friday, October 02, 2009 11:23:00 AM  
Blogger ZenMom said...

This is a great cause. Kudos for taking part!

Friday, October 02, 2009 11:38:00 AM  
Blogger txsjewels said...

happy birthday rhonda!!

i think you are all six shades of awesome.

yippeee for megan as well!

Friday, October 02, 2009 3:53:00 PM  
Blogger Mad Woman said...

You are a fantastic friend for posting this fadkog....I know more now than I did 5 minutes ago, and I'm grateful for that.

Hooray for Megan being able to play soccer and dance. Hooray for the doctor for recognising it and teaching her students. And Hooray for Kevin for spreading the word.

And Happy Birthday to his wife too!!

Friday, October 02, 2009 6:34:00 PM  
Blogger The Savage said...

I have nothing to comment....

Friday, October 02, 2009 10:50:00 PM  
Blogger lime said...

god bless that last docotr and god bless this family.

Saturday, October 03, 2009 3:59:00 PM  
Blogger Kristin said...

That poor little munchkin. At least she was blessed with loving and proactive parents!

Sunday, October 04, 2009 12:06:00 AM  
Anonymous Jen said...

Over from I Pick Pretty. Loved your interview and am going to peruse the rest of your blog. I am a fellow midwesterner these days. Not looking forward to winter.

Sunday, October 04, 2009 7:34:00 AM  
Blogger Pat said...

Thanks for the interesting post. How sad that doctors are not aware of this disease. I'm glad that Megan was finally correctly diagnosed. Obviously awareness is half the battle.

Sunday, October 04, 2009 8:11:00 AM  
Blogger bernthis said...

you rock. I am glad to be a part of this blogging group.

Sunday, October 04, 2009 3:24:00 PM  
Blogger WhisperingWriter said...

I hope your son is doing better. Poor guy.

Sunday, October 04, 2009 5:09:00 PM  
Anonymous DCUrbanDad said...

Hope your son is better.

Sunday, October 04, 2009 9:29:00 PM  
Blogger for a different kind of girl said...

Thanks to all of you who read Kevin's post here or on one of the 100+ other blogs this was posted, and for contributing where you could!

(p.s. - My son is better, thanks for the well wishes!)

Sunday, October 11, 2009 2:35:00 PM  

Post a Comment

Links to this post:

Create a Link

<< Home