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Sunday, September 18, 2011

6th Annual Walk N Roll to Cure SMA -- 11/20/2011 Scottsdale, AZ

What: Walk N Roll To Cure SMA
When: 20 November 2011, 9am
Where: El Dorado Park, Scottsdale AZ

I need a dozen or so volunteers to work the registration table, raffle desk, buffet lunch setup, to post our signs on the walk route, and host the kids games.  It's easy work--show up by 8am, then you're done by about noon.  Your family is welcome to come, too--the weather should be perfect as usual, there is a playground within easy walking/rolling distance, and you can't beat the company you'll be keeping (me!).  Scouts can earn community service hours, your kids can have a little fun, and your whole family can meet and talk with our other fundraisers and other families affected by Spinal Muscular Atrophy.  The jobs involving cash may be better suited for adults, but older kids are more than welcome to volunteer as well--we will keep them busy, I promise.  And the volunteers will never be far from the event organizers, so if you find yourself with a question we will be right there to help.

If you want to volunteer only your time, comment here or contact me directly.  If you care to volunteer your time plus a few bucks, join Team Double Trouble by clicking here, and then ping me here, too. 

Thanks to the Arizona Barbecue Association for providing lunch at our event again, free to all of our attendees--fundraisers and volunteers!  Also, every year we hold a raffle for some great prizes, so even if you think you are coming to *just* volunteer, you might consider bringing your checkbook just in case some of the raffle prizes are too appealing to resist.  Because they usually are!

Monday, September 12, 2011

I guess Kyle doesn't care for hospital stays.

Locally here in the southwest, we have an amusing commercial for a tire company.  The premise is that a man in the hospital is completely bandaged with broken limbs is listening to his doctors exchange niceties about a tire deal and is so moved that he leaps out of his bed--and out of traction--ripping out tubes and IV and all, conceivably in order to get in his car and take advantage of such a deal.

The first few times Kyle saw this commercial, he was upset and disturbed because he thinks the man looks like a mummy (he does).  But now he loves watching this commercial.  Why?  He has recognized the patient's free will.  That guy can get up and run out of his hospital bed.  Yes, Kyle envies the actor in that commercial because that man can leave his bed and leave the hospital.

Kyle: I wish I was like that man with the casts, I wish I could get out of my bed and leave the hospital.

Me:  Oh, it's okay, his doctors were right there taking care of him and he didn't really HAVE to leave.

Kyle: Mama! When I'm in the hospital, I wish I could jump out of bed and leave.

Me:  It's okay, hun.  If you're in the hospital, I'm with you and you're right where you're supposed to be. I wouldn't want you to leave, not until the doctors say we can go home.

Kyle:  Mom, the next time I'm in the hospital, I want my legs to get strong and I want to run out of there like the man on that commercial.

My heart = broken.

Friday, September 9, 2011

Kitchen Sink

I haven't done a great job lately of utilizing this blog to update certain family members about life.  Let's remedy that.

Jenna is in week 3 of second grade and she's a rock star.  She has lots of homework but finishes it rapidly every night.  We've been walking to school every morning (too hot to walk home in the afternoon), and that's been nice.

The twins are back into the groove of school, but they're sick.  Lauren seemed to have monster allergies last weekend but was back to near-perfect health by the start of the week, but Kyle caught something (which he passed on to me, yay) and has had this lingering cough all week.  He missed every day of school this week, though today seems to be much better.  But now Lauren has a fever, terrible cough, and is throwing up.  I'm getting frustrated.  And worried.

I managed to golf three times this week.  Go me.

Also, baby shower planning in full effect.  You're welcome, economy.  

So, to make up for my laziness in blogging, enjoy some first day of school photos:

Year Three of a closed-eyes photo of Jenna on her first day of school.

Saturday, September 3, 2011

I Hate Stairs. Part 1.

I nabbed the title of this series from my friends at I Hate Stairs.  It's actually a great site, administrated by two good lookin' fellas who really, really hate stairs.

I chose to steal this title from them because as a parent of two kids in wheelchairs, I really do hate stairs.  They do, too.  I scream, you scream, "we all hate stairs."  When the twins come within fifteen yards of an unguarded staircase, I panic and try to remember if I took my blood pressure medication that day.  Even though they are just four years old and are incredibly mature, but that doesn't make me freak out any less.

When it comes to our wheelchairs, I freak out over lots of scenarios.  In fact, whether I have the twins with me or not, I find myself surveying everything about your establishment to determine how wheelchair friendly it is.

Here in the United States, almost every building must be handicap accessible.  But there is a big difference between 'handicap accessible' and 'wheelchair friendly'.

I'll spend my money anywhere once.  If you want me back, you'd better be wheelchair friendly.  If you want me to not complain about your lack of accessibility, then fix it.  This "I Hate Stairs" series serves as a forum for me to vent about establishments who are wheelchair-ignorant.  It's not that I hate you, it's that I hate that my children can't come into your store.  It's a fine line between me bitching about a bad experience and you taking my feedback seriously because maybe just maybe we're not the only family with wheelchairs who dreads patronizing you because we cause a scene just trying to enter your store.

I'm not EVEN going to address Gymboree here.  Every family with a stroller hates Gymboree's lack of accessibility.  That's a given.  Oh c'mon, Gymoree--like you didn't know?  QUIT PACKING 30 CIRCULARS INTO 400 SQUARE FEET OF SPACE.  That we still purchase your product at all means that moms who are desperate for adorable, quality children's clothing also have some child-less time during the week when we can visit you without strollers.  Or wheelchairs.  Do you catch my drift?  Stop that strategy of blocking your doorways with tables of corduroys on sale for $19.50--that's all we can even see because we can't navigate a stroller into your store for all the mother effing displays.  Whew.  Okay then, stepping off my Gymboree soap box.  So, I guess I addressed Gymboree even though I promised not to.  Gymboree:  I really do love your product.  If I could ever reach your cashiers to buy it, you'd be in the black.  I pinky swear.

No, this "I Hate Stairs" series will be focused on specific local establishments.  Do you own an establishment in the Phoenix metro area?  Is it wheelchair friendly?  If not, then maybe you can look forward to finding yourself highlighted in this series someday.

I've got news for you, world--if my kids' wheelchairs can't get into your store, then neither can most medical strollers.  And twin strollers.  And senior citizens in walkers.  If you have steps at your entrance, then you darned well better have an alternate entrance--or you will lose business.

Seriously, I am done with apologizing to YOU because my kids can't get into your store so that I can buy something.  Our wheelchairs are not temporary inconveniences, they are our reality and I will apologize for inconveniencing you as soon as you find a cure for neuromuscular disease.  I will not stand for ambivalence and apathetic attitudes for another minute.  If you aren't in a designated historic building, build my kids a damned ramp.

Now, excuse me for a moment while I take the children to Wal-Mart BECAUSE THEY HAVE NO BARRIERS TO THE ENTRANCE AND ALSO WIDE AISLES AND AN UNDERSTANDING ATTITUDE.  That may be the first/only compliment I make to Wal-Mart--but they get it.  You don't.  Suck on that, able-bodied smaller-retail decision makers.