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Monday, May 31, 2010

What a meanie!

We went to the mall today--as all good Americans do on patriotic holidays. I spied a woman in a powerchair and quietly pointed her out to the twins.

Kyle: "It's a power chair!"

Lauren: "It's a red power chair!"

Their voices aren't very loud. They do point, but with weak arms. But this woman was near enough to us that she heard them. And she read them the riot act. "You kids. This chair is like my car, it's how I get around. And I push this button here to get away from people like you."

I have never. been. so. speechless. I point out this role model in her power chair roaming through a public place because I want the twins to see that they won't be the only ones. And she looks down her nose at my babies, assuming these cherubic two year olds are being disrespectful? Well guess what bitch? You're the one who is stuck with a piece of shit Invacare chair while my kids' chairs are individually probably worth more than your house.

She didn't give me a chance to interject before she powered herself away. What can I say? I had three kids who were watching me for cues and me dropping an f-bomb was not an option. My eyes were glazed over and the smile was glued to my face. And then I remembered we had cookies from Paradise Bakery which are WAY better than any meaningless approval from some disabled stranger.

So now that I've settled down (can't you tell that I've settled down?), I'd like to remind everyone about karma. And assumptions. Just because my kids are gorgeous doesn't mean that they aren't severely disabled (how can you not notice this?). Also? Their chairs weigh 300+ lbs and they will run over your foot if I give them the code word. (I'm just kidding. We're not so smooth a machine yet. If they run you over, it's by accident. Unless you're a British Petroleum executive and then it's totally on purpose--after all, I raise my children to be responsible citizens.) But really, all the rest of yous--I get that many people are saddled with crappy situations and we're all fighting a battle of some sort. But there's a special place for those of you who talk down to kids and don't even let them engage you enough for you to realize that they're worth listening to.

Also, this isn't the first time this has happened. It's just the first time I've told you about it. This is at least the second time. Our elders sure can behave like ass-hats.

Thursday, May 20, 2010

Interested in plugging your business?

At the 2010 annual Families of SMA conference there will be an auction. All the families attending the conference are tasked with bringing something to donate to the auction. I'm having a hard time coming up with something suitable to contribute to the auction, so I thought I would throw this out to the blogosphere:

If you own your own business, or if you sell handmade items of value, consider donating to the FSMA auction, or offer me a discount to buy it so that I may donate it. Many of the attendees are not typical families with young children--their children may be on critical life-saving machines all day, be fed through tubes, be on ventilators. The tragedy of SMA is what brings us together at this conference, and so our hearts can sometimes get heavy. Themed gift baskets, books, jewelry or other gift items might all be appropriate for this auction.

Proceeds from the auction benefit Families of Spinal Muscular Atrophy--a great cause. I'd love to support any mommy entrepreneur by bringing your creations with me to this auction. There is no set dollar amount, but I'd like any item I bring to have a little "oomph". Pass the word, and please get in touch with me by mid-June if you're interested.

Update 9 June: I've had a great response from the SMA community! I have a few great items to bring along to contribute to the auction, but would love more. Gift certificates, handmade items, local services, movie tickets, music or anything else that a family/couple might enjoy would be welcomed contributions to this auction. FSMA is a charitable, tax-exempt organization, and I can provide you with their tax ID number that helps anyone.

Tuesday, May 18, 2010

My First Guest Blog

I "met" my friend Debi years ago when I was pregnant with the twins. We were pregnant with our twins at about the same time, and we've been Facebook friends and Twitter buddies since day 1. I haven't actually met Debi face-to-face, but we're great virtual friends!

Debi writes a popular mommy blog, and when she planned a long roadtrip with her family this month she approached a few of us to guest blog for her while she was gone. I happily agreed, and wanted to share! My post is a light hearted look back at my pregnancy with the twins. Enjoy!

Bouffard 11: Who Says 8 Is Enough?

Monday, May 17, 2010

My Million Dollar Idea! Golfers, Keep Reading.

Summer golf league is off and running, and Jenna wants to golf with me sometimes. That's understandable. It makes me sad, though, that golf can't be a family activity for us because of the twins' disability. Chris golfs (he's better than me) (which actually isn't saying much), Jenna could golf with us, but the twins don't have the arm strength or hand dexterity to swing a club.

A-ha! I have an idea--mark the calendar.

What if there could be a way to mount our golf bags on the twins' powerchairs? Can you imagine! The twins could be the only three year olds in the world who understand "the 90 degree rule". They could get so good at observing my game that they suggest which club to use at that tricky spot when I'm 120 yards from the green (they'll know the distance based on the golf Garmin that I shall mount to the arms of their joysticks) and on a bad lie--4? 5? 6 iron? It's a crapshoot with me at that distance and a cruddy lie, really.

There must be a way for this to happen. On the Permobil C300, it's easy--just insert the clubs on the platform behind the seat (or rather, prop them up out of the top of the opening if necessary), and secure them with some sort of hefty belt. But the K450 presents a dilemma. There is no real platform behind the seat of the K450, so that only leaves the sides. And there's no legitimate platform on either side on which a bag can rest. This might require a DIY add-a-platform-to-wherever-it-will-fit project. And the bad news is that I did not take shop class in school--I was a violinist, so I gave up a class on practical, real life experience in order to goof around in the band room. I might need some help.

I emailed Josh the wheelchair guy tonight, and he promised he can find a way to custom-mount my bag on that K450--sweet! But I'm not sure I believe him...

But hey! I'm a mom! And a mom of twins! Is there anything we can't do? Any problem I can't solve? I think not. So, I give you this:



Done and DONE!

Sometimes I'm just so awesome that I amaze even myself. You'd think I'd be used to so much Awesome by now.

Friday, May 14, 2010

Friday Kitchen Sink

1. I am almost completely healed from all my various itis'es and sprains and strains. I'm back golfing, and am slowly getting back to running (after a 3 week hiatus).

2. Chris has booked his trip back to MS for his 20 year high school reunion. In Mississippi. In July. What a masochist.

3. Jenna only has two weeks of school left. What the.... ?

4. Lauren is doing great. Tonight, she only called me Captain Feathersword, and only answered to "Murray Wiggle". Jenna was "Jenna Wiggle" and Kyle was "Max Wiggle". Not sure what that was about, because there is no such thing as Max Wiggle.

5. Kyle still does not have his wheelchair. Not even close. In fact, he might be further away now than he's been this whole entire process--it's been one year since we began this journey. He also has significant knee contractures. And he's so low on the growth chart (does anyone have a link to that "special needs children growth chart" from the NIH?) that the neurologist is writing a letter to our GI doc to recommend a feeding tube. Kyle (and Lauren, too) cemented that argument by choking on their juice boxes. The neuro is contacting our GI doctor to recommend feeding tubes before next fall.

So, I'm not opposed to getting my kids what they need, but I hate that they seem to be getting stronger in so many ways, yet continue to choke and potentially aspirate liquids. This is it, kids. If we make the decision to install that feeding tube (mickey button), it's in there forever. Is it the right choice? Is there hope for a sudden leap in swallowing strength in the near future? Or do I give up and go with the option that painlessly adds nutrition and calories and bulks him (them?) up a bit before next flu season? And that option, ugh, it means adding an externally visible sign that says "I'm not normal" and also reminds me of that fact every day? I do a decent job pretending that there's nothing wrong with the twins, most of the time. Dealing with a g-tube and boluses and whatever else...well, to be honest? I thought we would have cured SMA before I had to make these decisions. They'll turn 3 next month. They've beaten the odds. But I do want them to be in the best possible shape to survive all their future flu seasons. Proper nutrition is key. I get that.

I'm going to get pity-partyish if I don't stop now. It's just that I don't want to tube feed my babies. I want them to eat what every other two year old eats--hot dogs and goldfish and juiceboxes. And I don't want them to aspirate while they do it.

We've resumed our house hunt. Our "perfect wheelchair accessible house" that we've had a contract on since last October finally got foreclosed on and the bank sold it to another buyer this week. Chris and I are wondering if we shouldn't increase our price range and just buy a home on a golf course. It'd decrease the mileage on my vehicle (and increase our popularity among friends) significantly.

Happy Weekend. Peace.

Thursday, May 6, 2010

An Open Letter to Children's Rehab Services and Arizona Physicians IPA:

Dear CRS and APIPA:

I am the frustrated mother of three children--they're all fabulously gorgeous and clever, but two of my three have a form of muscular dystrophy called Spinal Muscular Atrophy.

My 2-year-old twins have SMA, which means that they can't roll, crawl, or walk. They can sit upright for a short period of time, but a sneeze will knock them right over. Here in Arizona, they qualify for a variety of services based on their diagnosis--including AHCCCS (Medicaid), Arizona Long Term Care (ALTC), the Arizona Department of Developmental Disabilities (DDD), and Children's Rehabilitative Services (CRS).

At this point in his life, Kyle ("the boy twin") should be exhausting me everyday with his energy--running to and fro, being mischievous, and getting dirty. He can't, though, because he is not self-mobile. And at this rate he never will be.

You see, I've been working to get him his own set of wheels since last summer. A kiddo with type 2 Spinal Muscular Atrophy at his age can absolutely operate a powerchair on his own--I know it, because I've seen him do it, and I have home video to prove it. I've provided AHCCCS/APIPA with various published studies, letters of medical necessity, and dozens of pages of other documentation explaining and supporting why this toddler needs and deserves a powerchair of his own.

APIPA is his secondary insurance--we pay a mint for primary insurance through my husband's employer, who covers 80% of the cost of his chair. So far the remaining 20% of the cost of his powerchair is still pending approval from APIPA and CRS. Our primary insurer has already sent approval to cover their 80% of the cost.

The first APIPA denial was because the wrong ICD-9 code was used in paperwork from his doctor. The second denial was because Kyle's claim needed to go through CRS--even though he was denied membership to CRS last year after I applied for him. And then we got a random and confusing letter from CRS suddenly saying he was approved for CRS services. And then his request for a powerchair was finally denied this week for the third time because we didn't go through CRS for our request.

Are you confused? Because I am. Do you think I would waste my time casually asking and appealing and re-appealing for something that he didn't need? Perhaps I have nothing better to do than this? Because I have one child with asthma and two others who require constant attention, not to mention the administration of meds, plus stander time and Cough Assist, and have regular appointments to schedule and keep with neurologists, pulmonologists, pediatricians, orthopedic surgeons and gastro-enterologists, plus physical and occupational therapists, not mention a half dozen meetings with their new special needs preschool. I spend my "down time" researching ways to keep feeding tubes out of them and how to get them to spend more time in their AFO's and standers and hey maybe in my extra time I might fit in some stretches to prevent their knee and ankle contractures. Do you think I have time for your bureaucratic nonsense? As a taxpayer, I resent that you used this many stamps to send me denial letters when you could have just called me to determine what our situation was.

I need a hero there at Arizona Department of Health Services. I need a hero with some common sense and the power to make decisions and make this headache go away. Because what I haven't told you yet is that Kyle's twin sister, Lauren? You've already approved and paid for her powerchair and he has the exact same diagnosis and the exact same insurances. She's been sporting her new wheels since January. So how about we straighten Kyle's chair situation out, or maybe YOU can be the one to explain to my boy why his sister can go off and do whatever she wants to do while he has to ask his mother to pick him and carry him from one activity to another. And then you consider how his mother is going to have the time and money to schedule her own physical therapy sessions (thrice weekly) because of the daily physical strain of caring for twin babies with this debilitating disease.

And when you're done explaining, and paying, and considering, maybe you can help me figure out a way to trade my fancy top of the line minivan for something that can transport two powerchairs.

I know the saying "life isn't fair". But I've given up my entire life for my children (nope, this was not my Master Plan--I did have a lucrative career in IT back in The Day), and their disease is a hundred different levels of overwhelming. I am sick of wasting my time and falling through cracks and making pointless phone calls. What I do not need is one more schmucky, ignorant customer service rep of yours to get fucking condescending with me. I didn't ask to battle anyone, but you make NOTHING easy. What are the chances that one of you will read this and make my year? Probably no chance, I know. But I do feel better having dropped an f-bomb and pretending that you've read it.

The Obnoxious Mother of the Month

If you happen to be a friend reading this, consider copy/paste Tweeting this message:
Dear @AZDHS, Your bureaucracy is keeping a little boy without the equipment he needs. A little help? @GovBrewer

Monday, May 3, 2010

Today, I shook the hand of the next Tiger Woods

In the golf course pro shop today, the clerk nodded towards the 9th hole and asked, "Have you ever seen that kid before?"

I turned my head to see who he meant--a ragamuffin Latino child, wearing a Teenage Mutant Ninja Turtles t-shirt and basketball shorts, with hair down to his waist flying out of his baseball cap. (He was a sight. I wish I had been in a position to take his photo for you.)

"Nope, I haven't."

The man replied, "That kid doesn't have a bad swing. He's here everyday, practicing putting and chipping. He plays 18 holes once a week here with his dad and uncle."

My knee might be taller than this kid. Seriously.

I watch as the dad and uncle drive away from the 9th cup. Nico, the golfing wunderkind, tears after the cart. He catches it and passes it up, his long hair flying behind him and runs up the stairs to the pro shop.

Says the pro shop clerk, "Nico! My man! What're you shooting today?"

"I got an eagle and two birdies," replies Nico.

Nico's dad tallies up Nico's score for the front nine. The four year old shot a 44. I watch him tee off at the tenth hole, with his wee little driver. The kid shoots from the men's tees. The drive went at least 50 yards, I think.

I need golf lessons from Nico. But for today, he just made me happy.