Successful Saturday!

The Phoenix MDA Muscle Walk this year was so great. It started earlier in the day, so our on-site meal was breakfast (thanks, Fresh N Easy!) instead of lunch (lunch didn't go so well last year). The twins did me proud, navigating their chairs in all the crowds. It makes sense that for three year olds, navigating a bright and sunny outdoor crowd of hundreds of people might be taxing on the brain. And it really is.

I am fully convinced that we have conditioned them to be so aware of their surroundings and so conscientious of the safety of pedestrians that when they get strapped into their wheelchairs in large crowds, it overloads their senses after an hour or two. Do you remember how you felt when learning to drive a car? There's the unfamiliarity of a car you've never before driven, those vain feelings of hoping that you "fit in" and that the others on the road don't realize that you only have your learner's permit, and that serious-as-a-heart-attack awareness that you are directly responsible for the safety of others simply by not straying from your lane.

Yeah, you were fifteen years old back then. These kids are three. Years old. And one single hand-talking, backwards-walking woman stepped in between Lauren's wheels and stumbled into her. Lauren melted down because of it. See, ordinarily I read her the riot act when she runs into stationary objects, but this woman was a complete dolt (sorry, lady--I'm so glad you were there to support the cause, but really), and so Lauren reacted appropriately--she ran over a woman's foot, and so melted down and sobbed uncontrollably for ten minutes. From this experience I learned that maybe I've been a little hard on them for their driving mistakes. Honestly, it's just that I know they have such mad driving skills that I want everyone to be a witness to them--but no amount of discipline or self-satisfaction is worth how completely horrible I felt when Lauren took that accident so personally.

I can mostly control my children in their ridiculously expensive wheelchairs. I cannot control the rest of you. I am nearly as inexperienced with dealing with the oblivious public as my preschoolers are. I'm working on how to handle this stuff. All I know at this point is that next year's walk will go even better than this year's. Team Double Trouble raised lots of good money for the MDA, and we had a blast at the Walk. That's really all I care about.

Photographic evidence of the morning's events follow. Phoenix locals, please note the last few photos with local news station celebrities. I'd hate for anyone to think that we're not a big deal and that people know us.

Muscle Walk 2011

The annual Muscular Dystrophy Association Muscle Walk is being held tomorrow in Phoenix. This is the day when I wake up the four other members of my family at 0-dark'thirty to head down to Tempe by 7:15am to join a couple thousand other "walkers" (technically speaking, many of them are "rollers") to raise money for the MDA.

Did you know that the MDA offers free clinics staffed with some of the best neurologists, therapists, and wheelchair/medical device experts ever assembled so that those with muscular dystrophy can consult with experts on their care? No muscular dystrophy case is the same, so there is enormous value in having access to these centers of excellence where one can be confident in the advice given for our varieties of medical needs.

The MDA also funds critical research towards treatments and cures for the 40+ types of muscular dystrophy. They provide opportunities to places like Harvard, Yale, Emory, Johns Hopkins, UCLA, Temple, St. Jude's, UCSD, University of Michigan, Laval University (Canada), and University of Rome (Italy) to CURE. THIS. DISEASE.

The MDA also provides my family with a local, tangible, helpful support system consisting of compassionate MDA staffers and other MDA families where we have found community, advice, and moral support crucial to our financial (and mental!) stability. If my three year old twins had to be diagnosed with a terminal disease, we couldn't be luckier to find ourselves with such an amazing extended family like this.

I don't expect to raise a ton of dough for my MDA. But do me a favor and click this link and read our story. If you're curious as to how muscular dystrophy affects my children and my family, click here and here and here. Donate if you feel compelled, but if you can't right now, that's okay--I have two other fundraisers later this year in which you might choose to participate. :)

Lastly, our family was featured on our local Fox news broadcast earlier this week. The focus of the news story is on the one year anniversary of "Obamacare" and how it has positively affected local families. I tend to keep my political opinions to myself, but suffice it to say that the segment made the kids seem almost as charming as they are in real life. :)

Boy Meets Chair

It's been 13 months, 5 insurance denials (at least), and three phone calls with the governor's office (!), but finally, the boy got his wheels. There are still some tweaks to be made in terms of his seating and joystick placement, but behold the beauty of coordinating boy/girl power wheelchairs:






And note that even photographing them from the back, Kyle is still on the left. Have you noticed that? I almost always put him on the left. I don't think I'm OCD or anything, but the boy being on the left is certainly a recurring theme with me. Also, I am left-handed. Also, the girl is left-handed. The boy is a rightie. I don't know what all this means--you pick it apart for me because I'm already confused after just writing this paragraph.

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So, in case you're joining us for the first time, my twins just turned 3 years old and have a neuromuscular disease called Spinal Muscular Atrophy. They didn't show any symptoms until about 9 months of age, and it took 6 more months to get a diagnosis. SMA kiddos are super smart and social, but their bodies are weak. This is a degenerative disease. It is terminal. There is no cure. That bears repeating: My twins have a terminal disease, and there is no cure. But there are some nifty ways to make life more normal for them, and $65,000 power wheelchairs are one of those ways.

We also have a daughter about to start the first grade, and she does not have SMA--however, she does have what I like to call 'bout-to-be-terminal-sassyness. But my middle name is patience, so 'we shall overcome'. No worries.

Lauren got her chair in January, but Kyle's chair inexplicably got delayed 6 more months. The powerchairs are the reason why we're moving to a different house. We closed on the new house last week and hope to be moved in by the time school starts next month. We're also shopping for a wheelchair accessible van so that we can, you know, actually go places with their chairs. We're looking at shelling out well over $50k for such a thing, which completely blows, quite frankly. If I spend $50k on anything, it better include some sort of kick-ass tummy tuck for Mom, amiright?

So to those who stuck with me during this year-long ordeal, thank you. I know that complaints are not very interesting to read, but you hung in there and I high-five you for that. And my blogging frequency may be affected with the big move we're about to embark upon, but I hope to get back to the regular funny shortly after that. xo

p.s. the Jerry Lewis MDA telethon will occur Labor Day weekend, somewheres around September 5th, 2010. Watch the blog for some potentially interesting updates on this. Nothing is finalized yet, but let's say that the twins and TV cameras could be involved. Shhh, you didn't hear it from me.

Stride N Ride 2010

Alert! Only one more day to donate! We're $600+ away from our fundraising goal--would you like to support Team Double Trouble in the MDA Stride N Ride this Saturday?

We love us some MDA. Spinal Muscular Atrophy is one of the 40+ muscular dystrophies, and one of the diseases closest to a cure. The MDA provides our family with moral and financial support and so we do whatever we can to support them when we can.

I'll take your money, but I'd love your presence at Tempe Town Lake on Saturday to walk with us. Click on Team Double Trouble to register to walk (it's free) or to donate (which is not free) (obviously).

Our 15 Seconds of Fame

We made it on TV for a few seconds this morning. Channel 3 was running about an hour behind, but the babies hung in there for us and we got to say a few words about how the MDA is financially assisted our family with the babies' AFO's.

Our friends the Keeney family met us there, and the kids all had a blast. The clowns, with their balloon art and face painting, were the real stars this morning. I grabbed a business card from them, because Jenna is so in love with Juji Fruit The Clown that we may have to hire him for her birthday party next year.

There lots of companies who had booths and were giving away free food and gifts. Rubios and Chick Fil A and Famous Daves BBQ were favorites, plus Verizon and Hubbard Swim School, Bass Pro Shops, Petco, Home Depot, the list goes on. Riverview Toyota is really a standup firm, and not actually too far away (Loop 101 at Dobson, just east of the Loop 202). They hosted the satellite event today, where we were at, and they were just great. It was a great time, and the kids had a blast and we really appreciate their involvement with the MDA.

Little does Chick Fil A realize that these two vastly prefer McDonald's chicken nuggets.

Grandma and Kyle

Jenna and the completely sane clown posse.

Jenna with Ariel, courtesy of Juji Fruit.


Waiting for the cameras to turn towards us....

Jenna and her new BFF, Juji Fruit The Clown

Chris with his new BFF, the A-Team van. K.I.T. is in the foreground.

Money and Telethons

Quick! I'm in the running for raising the most money for the Phoenix chapter of the MDA! Help me regain the lead I had in week 1 (five weeks ago) by giving me your money!
https://www.joinmda.org/phoenixbeastar09/cass1218

Whew. What in the heck was that? It was like some stranger came though my blog post in a drive-by, begging for money. That is some crazy talk. Pardon? Huh. You mean that because my babies get money from the MDA that it makes sense for me to whore out my fundraising site on my blog? I'm not saying I disagree, I'm just saying maybe someone could run it by me first. I mean, 3 whole people read this blog each week, and I really need to increase the perception of my babies' cuteness a little more before I start pimping them out for the MDA. Wait, who am I kidding? They're cute enough. You know it. Now give me your money. Via that link above.

Speaking of money and the MDA, guess who will be on Phoenix Channel 3 tomorrow (Monday) morning, during the MDA telethon? Jerry Lewis? Good guess. Charro? Yeah, probably. Firefighters? You betcha. Also? Me. For real. I am so not joshing you here. Chris and me and the kids will totally be the best 60 seconds that the MDA Telethon has ever seen! Set your Tivo--channel 3, sometime between 9:40-10am. I'm figuring that when the Channel 3 people get past the cuteness of my adorable children, and how handsome and well-spoken and intelligent--not to mention spikey-haired--my husband is, they're totally going to realize my heretofore unrecognized talent for being sly and clever and dryly sarcastic on the air, all while sounding totally professional, and also for being very interested in critical lifestyle choices such as golfing, wining, and parenting. And also, for how great I can make a $16 dress from Target look. I could be their on-air (and highly paid) bargain shopper correspondent. Right? Or anytime they need someone funny and interesting who didn't actually graduate from U of A (because everyone who is funny and interesting usually has graduated from UA, but not me, I only went there for two amazing years. Two years from which I doubt Tucson has recovered.).

Just please, nobody tell Channel 3 that I really just watch Channel 12. I'm sorry, but way back in the 90's, there was a huge local television switcheroo where all the channels switched affiliates, except for Channel 12/NBC. As it turned out, I could never keep track which channel was which network, and so I just gave up. I watch Channel 12, just to keep things simple.

Also, big news at the Byrd house--we made an offer on a new house. It's a major short sale, so I don't want to tell you too much about it because I don't want you to become too attached to it. But really, it's perfect for us. It was literally made for people in wheelchairs. It has a roll-in shower in one bathroom. No steps. Wide hallways. Hardwood floors (wheelchairs tear up carpet, eventually). Ah, I've said too much. I bet you're getting attached. Stop it! The bank will probably never approve this sale, because they're going to lose way too much money in the end. But we tried. And we keep looking for more single-level houses in the meantime, until the bank informs us that we're crazy for thinking they'd even consider handing this house to us practically for free. I'll keep you posted.

Alrighty roo, I need my beauty sleep. This undereye area doesn't stay wrinkle free from staying up all night blogging, you know. So! Set your Tivos! Watch your Twitter tomorrow morning! 'Cause you know I'll be all a-twitter with the goings on before we go on camera. TTFN.

Hey Phoenix: Eat Some Pizza and Support the MDA (and therefore SMA research)

NYPD Pizza this Thursday is enlisting the help of the Phoenix Police Department to wait tables, and your tips will be donated to the MDA.
http://www.evliving.com/2009/03/10/4210/fight-muscular-dystrophy/

The MDA "buy a shamrock for $1" campaign ends one week from today. My twins benefit from real financial aid from the MDA, so now you that that's where your money goes. Maybe my babies should be poster children for the MDA. Indeed, they are cute enough. But anyway. I digress.

I bought my MDA shamrock at a Honeybaked Ham store this week, of all places, but I know all the grocery stores are selling them, too.

So if you like your cops walking up with a pizza instead of a traffic ticket, join us at 20th Street and Camelback at NYPD Pizza on 3/12, from 4-9pm. Or, just swing by and drop some money in the tip jar that I'm sure they'll have out. (And I suspect that there is more than one NYPD Pizza participating in this, but I'm not sure...)

Thanks to everyone for their support! Go buy a shamrock!

Holy Expensive Leg Braces, Batman

I got the babies fitted for their AFO's this week. (Those are leg braces.) They're quite attractive. And freaking expensive! $1300 per pair, per baby. And they have to be replaced as their feet grow, just like regular shoes. Zoinks. And you thought Stride Rite was expensive?

They look something like this:






Many, many thanks to the local Muscular Dystrophy Association, who is actually paying for these this time. They have a certain amount to spend per patient every few years, and these braces fall within their limit. So we'll have to buy next few sets, but they'll chip in every 3 years or so. Woo hoo for free money!