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Monday, September 27, 2010

So then in the mailbox I found...

Would you just look at that handsome family there at the bottom. Whoever on earth could that be? Read the Consumer Reports guide to health care reform here.

Want another take on this year's health care reform bill? My pals Bill and Victoria--parents of sweet Gwendolyn and founders of the Gwendolyn Strong Foundation--interviewed with the New York Times last week.

Monday, September 20, 2010

Halloween Costume Brainstorming

For Halloween this year, the six year old wants to be a vampiress.

Three year old girl wants to be Snow White. Three year old boy claims he wants to be a pig (?).

My challenge to you, blogosphere, is to help me come up with ways to incorporate the three year olds' wheelchairs into their costumes. I'm not sure what we can do with them for Snow White and a pig, so throw out for our consideration even better original costume ideas which can incorporate their chairs.

My pal Lorraine set the bar high last year with this masterpiece for her daughter, Zoe. See what I mean?

The gauntlet's been thrown! Brainstorm away!

Sunday, September 19, 2010


I know that most of you don't follow me for hockey stuff, and I get that. But this weekend was the beginning of camp for the Phoenix Coyotes (season starts in about 3 weeks) and I was beyond thrilled just knowing that they were back in town and lacing up their skates here. And then I heard that all their practices are open to the public. I figured the kids might really get a kick out of going to see hockey for the first time, and the event is free so even better, right?

I knew I wanted the twins to be at the arena in their wheelchairs--and I'm sorry, I know this probably gets old to you guys, but we're still getting used to them being self-mobile in their chairs all the time. What's funny is when I take them somewhere in the old fashioned baby stroller, they HATE it. They're stuck going where I push them and they can't go here and there and to and fro and they miss their independence. And I love that they miss that. It took me 13 months and seven insurance denials to get them to this point, so they damned well better prefer their own wheels to my stroller.

Anyway, since I've not been to Arena for a long time and didn't know how wheelchair friendly it was, I decided to give them a call to get a feel for what we were in store for. I contacted Director Paul Serbic at Jobing and he promised me he'd hook us up. He gave me his personal cell phone number, met us at the gate, took us down an elevator to the glass and let us stay there for hours while we watched the Coyotes skate. It was so awesome. The crowds were light, but all the big name players were present: Doan, Hanzal, Morris, Prucha, Pyatt, Jovanovski, Bissonnette, etc. I can't guarantee that my babies will ever see a real live NHL game in person, but good golly I let them touch the cold glass, admire the ice, and watch the boys skate.

Lauren was quite concerned that "the boys are playing too rough", and then someone got checked right into the glass in front of her and she about lost it. Kyle only cared about the pucks, which worked in his favor because between the refs and the coaches he got three pucks (with ice still on them as souvenirs). Jenna only cared about howling (it's a thing at Jobing) and hot dogs (that's a thing with six year olds).

We met Jim Brewer, VP of Coyotes Marketing and Communications, and he gave the kids a tour of the down-beneath so that they could see the Zambonis. We met the head of security, who is a fine, patient, capable gentleman. We met Howler, the Coyotes mascot. And Paul gave each of the kids a Coyotes teddy bear.

I walked on air all day. A sport I love, a team I adore, staff who bent over backwards to show my kids a good time--this is why I love my city. If I'd had a second to breathe and reflect that day then I would have gotten all teary-eyed then like I am now. It's just that we can't bring the kids in their wheelchairs everywhere--but this is the place where we can. In the U.S., almost every place by law has to be wheelchair accessible, but there are degrees of wheelchair friendliness. I just am so happy that the Phoenix Coyotes can accommodate my family and I can. not. wait. for the season to start.

Except for the whole "I'm afraid of heights and sitting in the upper bowl completely freaks me out but I can't afford five tickets in the lower bowl so I guess upper bowl it is but I'm going to need a drink" part.

Without further ado:

Also: I am new to hockey. I have never EVER hidden this fact. I don't know icing from a regular pass. I enlist Twitter friends to whisper things to me so that I understand the ABC's and 123's of hockey--Seriously. But if anyone needs a new fan, it's the Phoenix Coyotes, and if the world won't suck it up and accept me as a new fan then I don't know what else to do. I don't know the sport and I've never played it--I'm a Suzuki trained violinist for crying out loud. I bring nothing but enthusiasm for the sport and money for my game tickets. If you don't like me or don't care for my stupid rookie questions then f-u-c-k y-o-u. I'll be in section 118 and you can buy me an $8 beer when you get over yourself.

Thursday, September 16, 2010

This is SMA

Today some of my favorite people are blogging together, simultaneously--it's an "SMA Blog Party". Of course, there isn't much to celebrate. Severe physical disability isn't the stuff that balloons and clowns and ponies can fix (or is it? hmm). I wish I didn't have a reason to know these people, though. I mean, they are perfectly fine individuals--awesome people that I'd be lucky to be friends with under traditional circumstances--but I only know them because our kids suffer from the same terminal illness.

That figures, huh? "Great to meet you, but I'm sorry I have a reason to meet you at all." That's what I tell other parents of kids with Spinal Muscular Atrophy. I admit, that sounds pretty shitty of me to say, but they always understand. They understand because their other, pre-SMA friends don't. And they don't want to know me anymore than I want to know them. I don't want my kids to suffer a debilitating and ultimately terminal disease anymore than they do. But you know, if wasn't our kids then it would be someone else's kids. So I set aside my typical "woe is me" point of view for today.

You want compelling? Read about Andy here.

If you want to learn more about SMA, certainly visit Look for the new video I posted from our recent MDA telethon segment.

If you want a tiny slice of life with kids in wheelchairs, visit this gem of an article.

I was granted the opportunity to guest post on my friend Debi's blog, in honor of today's SMA Blog Party. Check it out.

What I'd really love your support in is regarding the Jimmy Johnson Helmet of Hope contest. You don't have to create a profile or log into anything. Just click here, scroll down to select the Gwendolyn Strong Foundation, enter the security phrases, and hit enter. Piece of cake. You can do this daily until the end of September.

is the same age as my twins, but she has a more severe form of SMA. The amazing thing is that the same cure will help all of them, and a cure for SMA may unlock cures or treatments for other diseases, too. So do me a solid and vote to give the Gwendolyn Strong Foundation $20,000. All the money goes towards funding cure-focused research. The research community agrees that we're on-the-edge-of-our-seats close to a cure for SMA. Let's make it happen, my friends. Click, vote, and let me know that I can add you to my long list of people who support the Byrdlets and our other SMA friends.

Friday, September 3, 2010

Buying in Bulk From Apple?

The twins have limited fine motor skills, so when it comes to holding a pencil or pressing buttons they tend to struggle a little. They have played with the iPhone a little--we don't have iPhones, but we know people who do. Some very patient people who allow clumsy three-year-olds to play with their very expensive electronic gadgets.

I am sold on the iPod touch. I want both twins to have them. And of course Big Sister would need one of her own, too, because heaven forbid my children have to share anything. Plus, this week I also got to play with an iPad, and in an ideal world all my kids would have one.

This technology... just, wow. Does Apple even realize the world they have opened up for people with disabilities? There is no chance that the twins could manage a regular keyboard and computer, so the iPad just, well, it blows my mind. It's incredibly cool--and fragile. Hello, Apple? You listening? Could you make a kid-proof iPad that can be repeatedly dropped without breaking? Thanks.

I want them to have cool "toys". I want to stimulate their minds. I want them to learn stuff. I want them to be comfortable with computers. I cannot even begin to put a price on the value of these Apple products. But Apple sure did, eh? Can you imagine the cost of three iPod touches and three iPads (to help you imagine, I calculated--$2,184. Plus tax.)? I don't blame them for their price points, but I'm feeling a little overwhelmed at the expense. Other kids spend their time walking and running and getting into everything and satisfying their curiosities every minute by exploring the world around them--my kids are stuck in their chairs and can only play with lightweight toys with simple/easy buttons. Plus, their big wheelchairs combined with their short arms means that they can't reach out to grab things very well. Anyway, all I'm saying is that Apple's technology is incredibly innovative and so useful to people in the disabled community and I can't wait for my kids to benefit from it. And if I buy all this stuff at once, any chance that I could get a discount?

On a side note, as I drafted this blog I was unsure how to pluralize "iTouch" and so I asked Twitter. The Twitter community came through for me and made me laugh so hard that I'm still crying a little. It turns out that what I mistakenly thought was an iTouch is actually an "iPod touch® mobile digital device(s)". And now you know, too.