Making The World Better: Help Cure JM

The beauty of the blogosphere is the ability to help make the world a better place by reaching out to people you otherwise might have never known. Today is on of those opportunities.

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.

***

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

Brought to you by Dad Blogs and their Fatherhood Fridays

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Old Timey Movie Extravaganza

Well, my last several posts have been a bit... um... heavy (and probably too long). My wife is blaming it on me falling off the wagon with my Midol addiction. It's likely I'll be back in Betty Ford by the end of the week.

In the meantime, how about I just show a couple old movies from the golden age of film. Did you know Indiana Jones, Forrest Gump and Ghost Busters were all remakes of originals from the 40's and 50's? No, it's true. Here, watch.

Indiana Jones

Forrest Gump

Ghost Busters

Okay so they're not really remakes, but I thought them very clever. Gotta run. I'll write you all from the clinic.

"Hello, Liza and Lindsay! How long has it been?"

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The Hypocrite

When I wrote the Dear Soccer Mom post, I had no idea it would illicit such a response which is ironic seeing as how I almost didn’t publish it. Reading the comments, emails and tweets, I wondered why it had resonated so strongly with everyone, and what I concluded was that so many of us live our lives without pretention. We buy in bulk to save money, we drive cars that meet our needs, and we extend courtesy to those around us, all the while teaching our children to abide by the same general principles. So, when someone like Dear Soccer Mom looks down their nose at us, it flies in the face of not just our lifestyle but also of who we are. No one wants to be judged for wearing clothes from a discount store or for the dents in their minivan and there’s an indignity that swells within us—an indignity we have all experienced at some point. It was vindicating to see how many people felt the same as I did, and yet, this vindication was damped by an unexpected feeling of hypocrisy within me.

There is a portion of my life that I rarely, if ever, write about covering the years immediately divorce my divorce. There are several reasons for this, one of which being that I think a majority of people as parents would find it hard to relate to the carefree life I lead as a bachelor. And now with Jon Gosselin running around like the biggest tool in Lowes’ hardware section, I doubt many would sympathize with me either. I wasn’t quite as dumb as him, but there were moments. Partying with The Pussy Cat Dolls and Jenny McCarthy, dating gorgeous women, and generally living like a rock star isn’t going to win me any Father of the Year awards. However, what separated me from Jon was a my self-imposed rule never to engage in anything with consequences that would hurt my parenting responsibilities. Thus, no doing lines of blow off hookers’ asses. Even still, I also bought into this image—the hot car, the pricey lofts, the expensive clothes—and although I may not have been as snotty as Dear Soccer Mom, I based my identity on this extravagant lifestyle in the same manner portrayed in my letter. Of course, in the end we know how that turned out for me.

In a three-month span I met my wife, lost my job, and was forced to become a stay-at-home dad. All the major components of my identity were gone and everything I thought I knew had to be reevaluated. The change turned me into an asshole. I punched the console of the minivan out of the anger of having to trade in my car; I lashed out at my wife for having to move to our apartment in the “projects;” and I blamed everyone else for the fact I was apart from my sons. Time has changed my attitude now, but a part of me wondered if my contempt for Dear Soccer Mom stemmed from a jealousy of her owning the comforts that once made my life easier. But I don’t believe that’s the case.

With me staying home, my wife Ashley’s career has flourished, particularly her freelance work with many of her clients being some of Houston’s most prominent, hip socialites. The night after posting Dear Soccer Mom, we attended a party thrown by this hip group of cliental. Ashley was supposed to be a co-host and I thought it ironic that I now played the part of arm candy when a few years earlier it would have been the other way around. Needless to say, there were few parents at the bash aside from a great single father who is also a child therapist. Other than him, Ashley and I had difficulty connecting with the crowd beyond a superficial level.

We chatted with this young district attorney who thought he was impressing us with the details of a serious child abuse case. “Yeah, someone dropped these kids off in my office first thing in the morning and I had to baby sit them all day. They had had the shit beat out of them.” Of course this was horrifying and more so when he told us about having to drop them off back home with the very people he was prosecuting. “Well, not my problem.” He laughed.

Hey Chucklehead, you and your perfect hair wouldn't feel that way if you were parent.

An abrupt awkwardness set in prompting him to ask for direction to the bathroom. As he walked off, I scanned the room. I used to be a regular part of this kind of scene and now it felt like wearing an old pair of jeans from college that no longer fit. This wasn’t me.

The thought resurfaced in my groggy brain the next morning while making a donut run for the girls. A Coldplay song started to drown out mysterious rattle in the minivan’s engine. “The Hardest Part” off their X&Y album. I play this tune at least once a day much to the chagrin of my musically enlightened wife. I’ve heard it hundreds of time before, without ever hearing its message until this past year. It’s about dealing with change, the kind we have no choice other than to accept it which I find apt with respect to the recent events of my own life. I’m stunned into silence every time it crescendos into the end.

Everything I know is wrong

Everything I do it just comes undone

And everything is torn apart

Oh that’s the hardest part

That’s the hardest part

Yeah, that's the hardest part

That's the hardest part

The words are reminder of how little I knew about myself before becoming a stay-at-home dad, how, no matter what I did to get back to that former identity built on the same things as Dear Soccer Mom, my efforts would just come undone.

With the music playing, I thought of reading the blogs of Matt Haverkamp, Eric Skates, PJ Mullen, Justin Howefitz and other great dads with new children, and they amaze me. When my kids were this age I wasn’t half as attentive as these guys. Even back then my struggle to build a false identity overshadowed the joy I should’ve been taking in my children. It took a divorce to finally make me tune into my boys’ needs, then it took me losing my job to understand who I really was—a father. Pulling away from the Starbucks drive-through, another realization occurred to me, one that brought with it an intense sadness: I hadn’t chose to be a father like some of these other dads; instead, I had to have fatherhood thrust upon me through circumstances that stripped away all those unimportant things I had been trying to hold on to.

After brining home the donuts, I went in the bedroom and cried for twenty minutes—partly out of shame for being so selfish and partly out of gratitude for what I know now.

P.S. Found out Friday that Dear Soccer Mom's daughter is having a birthday party next week to which we are invited. As a present we're getting her kid monogrammed bath towels... just like she did for our stepdaughter's birthday.

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Dear Soccer Mom

Disclaimer: Just like stay-at-home dads who don't like the "Mr. Mom" title, I know there are mothers who feel the same about the term "Soccer Mom." If you are one of those (or any) mothers who loathes being categorized as such, please forgive me. In fact, this post is NOT even directed to the "Soccer Mom” demographic but rather, a particular person I had dealings with this summer who I'm referring to as such since she personified this stereotype.

Dear Soccer Mom,

I just wanted to take an opportunity to tell you thanks for having my stepdaughter over for a play date with your daughter. From what I heard afterward, it sounds like they had a wonderful time. My stepdaughter couldn’t wait till school started again so they could see each other every day.

I also wanted to express my thanks for being the first person to make me feel inferior about my life as a stay-at-home dad. It’s entirely possible that I am being overly sensitive here; there is an awkwardness that comes over me when explaining what I do to other men, but this never happens when I’m around mothers. However, from the moment when you came to pick up my stepdaughter and crawled down out of that ten-foot high SUV, you immediately put me on edge without a word. There is certainly nothing wrong with owning a nice vehicle that can also crush cars, nor is there a problem with wearing a skimpy white tennis outfit that failed horribly in hiding your spray-tanned skin, the consistency of which reminded me of a worn out catcher’s mitt. Had this been our first meeting, I wouldn’t have judged you on such a superficial basis, but you brought this upon yourself.

I understand how you could find this claim incredulous given the way you were intently gawking at the buildings in the apartment complex where my family lives. Again, I would’ve thought nothing of it until you hesitated after saying “this place is….” It seemed like you were searching that perfect word to complete your statement, but that pause changed the implied meaning in your use of “nice.” Yes, this place is nothing spectacular. It’s just that, we needed something in a hurry inside this school district, and being in a lease also helps make it easier for a future move to Chicago. I would’ve explained this to you, had you not been busy telling your daughter not to mess up the car’s interior loud enough for my stepdaughter to hear you.

Thanks too for informing me to be early in picking my stepdaughter up since you now needed to run a previously unplanned errand in the afternoon. As you may recall, I made good on your request, but then again, how could you forget, what with the dented minivan I pulled up in. By your facial expression, I thought maybe by parking it in front of your place your property value had dropped by 50%. Forgive me; I’m jesting of course. If the neighbors in your exquisitely manicured cul-de-sac inquire as to the van’s presence, feel free to explain that it was a pizza delivery or that the cleaners had come a day earlier than usual.

Again, maybe I was reading too much into our encounter, but I think not, not when you burst out with, “how did that happen!” after I admitted to being a stay-at-home dad. Maybe there hasn’t been much talk about it the country club, but the economy’s not doing well, so being unemployed is not all that uncommon right now. It was kind of funny the way you chuckled under your breath when you mentioned how your husband couldn’t lose his job because he’s too valuable to his company. I thought that once myself which is why I laughed too.

I hope you believed me when I answered yes to all those questions pertaining to my proficiency at cooking meals, clean our apartment in the projects, getting the girls ready in the morning, picking up groceries and performing all those other duties you pay others to do. And yes, I’m a writer, and I’m happy about it. You’re right, it doesn’t make much money, and sometimes I wonder the same thing you did aloud about not being able to see how anyone could make it financially in such a profession. That’s why I felt compelled to add on that part about my consulting work with financial firms; it’s irregular, but sounds good at least. Besides suddenly not feeling good enough as a person, I didn’t want you calling CPS because you thought the children were living in squalor.

After so many probing questions, I trust you were still able to make it to that unexpected errand in time. You probably could’ve saved yourself twenty minutes by asking the one question that all the others appeared to have some basis in: What tax bracket did I file my 2008 Federal Return under? When you approached us at the school musical, I’m betting that they way my wife and I dressed caused you to believe we all were in the same bracket didn’t it? That’s probably silly of me to think, but I’m only saying this since that’s how you’ve been judging me all day. My wife says all the time that money can’t buy class, and I just got what this meant. Ha!

Well, here’s to surviving the new school year. It’s too bad that the girls don’t seem to be hanging so much now after being practically sisters before the summer break. I’m sorry the several invites for your daughter to have a sleepover don’t seem to fit with your schedule. Honestly, it’s for the best; I don’t want my stepdaughter using the words “Botox” and “augmentation” in her vocabulary until she’s old enough to vote. Despite everything, I do hope your daughter liked the bracelet my stepdaughter made for her to wear on the first day of school. That reminds me; I’ll have to send you an autographed copy of my book when it comes out. See you at the next school function?

Toddles.


- Ron

PS. I noticed you’re 3,500 square-foot home was for sale and I wanted to mention a few things: There are several shingles on the garage roof that need to be replaced; that green stuff at the gutter spouts should be power-sprayed as should the mildew on your siding, and adding a little color to your flower beds might give some curb-appeal. Also, I checked and your home’s been listed for almost six months, it’s priced well above the market and competing with four other newer homes less than a mile away. I guess I forgot to mention that my last job was as a VP of sales for the largest homebuilder in town. Had you not looked down your nose at me so much, I would’ve offered to contact three of the top realtors in the area and they could’ve had it sold before I ever made it back to the projects with my busted up minivan. Now I hope you loose a butt-load on it.

This Fatherhood Friday post brought to you courtesy of the good people at Dad-Blogs. Go there to read other great posts, by great parents. While you’re there, look around and join the Dad-Blogs community.

Additional fun provided courtesy of Kat's "Dear So & So." Join the fun.

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