Honea Express

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.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.

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:

DadCentric:

“Amazing Tales for Making Men Out of Boys” a Book Review by My Wife With a Running Commentary by Me, a Man That Used to be a Boy

Dan Zanes and the Fine Friends DVD – The DadCentric Review

A Pot to Potion

The Art of Pointing Fingers

A bunch of stuff at UpTake.

My part at Polite Fictions.

MamaPop:

The Beatles and Disney – It’s On!

Twitter Fail Starring Jon Gosselin

And I Know God Because of KRS-One

FameCrawler can always use your clicks. That’s how the kids eat.

Then there was Twitter…

And here are some pictures Atticus took:

At this moment you are sleeping in my bed. You have the company of two dogs, two cats and dreams that only know innocence. You fell asleep crying and there is a smile upon your lips.

You will wake up in your own bed – perhaps with a pet. It will be the crack of dawn or the hour before it. You will wake with an energy that I envy and you will do things I wish you wouldn’t. Like getting up.

You will try to be quiet with whispers at a roar and you will wake your brother with the same ‘accident’ you did yesterday morning. And the day before that. The day is new and you dare not face it without him.

It is easy for you to pick up where your brother left off. It is also unfair. You spent a year walking him to school and a year counting down the hours until he returned. You spent a year planting kisses upon his cheek and a year making him cry. And vice versa. A year is a long time when you have only known three.

You look up to your brother and rightfully so. His footsteps are deep upon us all, but as inviting as you may find them they are not for you to follow. Your path is yours to make. I trust you will go the right direction. I trust there will be many turns along the way. I trust.

And tomorrow you start your walk. It starts with a few hours here, a few hours there. It starts with a circle and a song. It snakes and it winds past pretty flowers sharp with thorns and pockets of warm sunshine through darkened trees. This is the metaphor where adventures are made and yours is in the taking them. It is a baby step of epic proportion. There is no turning back now.

Perhaps we take preschool too lightly. Perhaps we take it for granted. But the truth is that it is new to you and it is new to us. There are unchartered waters before your feet and tomorrow you get wet.

Dry is dull and overrated.

Enjoy your day and the start of it all. Your mother and I will be waiting in the silence that you left us – it is solace with a bitter streak.

When in doubt, flash your dimples.