Sunday, March 17, 2013

Perspective -- Taking Off

Today, we went to the Abilities Expo in LA, which we also went to last year.  And, just as I felt leaving last year, this year, I felt so, so full.  It is amazing to see the possibilities in adaptive equipment . . . things to ensure that someone's physical challenges do not have to be "limits."   All-terrain wheelchairs for the beach, scuba driving equipment and instructors for parapalegics, adaptive Harley's (!) . . . all just amazing, amazing, amazing.   (Though, I will say, taking a step back and realizing the costs of these things is more than a little discouraging.   What we are learning is this --- insurance only covers what is "medically necessary" for someone with disabilities -- not things to make their lives easier or allow a them to interact with world in a more "typical" way,  but just what is "medically necessary" and that's really, the bare minimum.  The bare minimum or what is only "necessary" is certainly not enough for my girl.  So, today, even though I was encouraged to see (again) what incredible and amazing possibilities there are, the fact that these "possibilties" are really only affordable for the 2.5% or so of the population that can afford them . . . is depressing and overwhelming, to say the least).

Anyway, the things we wanted to do today were to (1) look at pediatric wheelchairs (power and manual) and see if we could convince a certain stubborn little lady in lavender glasses to give either a whirl, (2) talk to vendors about funding sources for both, and (3) look at adaptive vans.

So, I'll just get this out of the way so I can turn back to the happy happy parts of the day:  the only tears I had in my eyes all day (other than happy ones that is) were when I walked away from the converted, adaptive van display.  To have a van, exactly like the one we have right now (which is by no stretch a luxury vehicle), equipped to load Sammie B and a power chair into . . . $49,000.   Yep.   So, I cried.   I walked away sad and mad, and thinking through how we'll finagle that cost.   And what it will mean for us logistically that we'll really only have one car that can transport our girl.   Right now, she is regularly in three different cars . . . B's, mine, and our nanny's.   There's no way we can possibly buy another car to have as an extra, which will be required if our nanny needs to use my van during the day (and we sure as hell won't be able to afford an "extra" after paying that much for a van!).   Blech.  Damn.  Darn.  Shit.  Boo.  End of rant.

Here's the thing . . . the rest of the day was happy.  Amazing.   The people working these pediatric chair vendor displays are amazing.   Amazing.  At first, Sammie B was too afraid to even sit in the power chair, but they got out an adult one for B to try, and Sammie B sat in his lap and drove it all over a big open space -- zipping around, screaming with glee.   Then, we went to a booth for small, lightweight sport chairs (manual) and talked her into trying one, and showed her how to move the wheels.  She said, "bye! I'm leaving!" and off she went . . .(backward, but whatever).   My eyes filled with tears -- the happy kind -- and my heart felt so, so full.   There was another mom there whose 5 year old son was also trying one for the first time, and I said, "I thought I'd cry the first time I saw her in a wheelchair.  I thought I'd be sad, but my heart is leaping out of my chest right now . . . " she said, "I know!" and so both of our eyes filled with tears, and mine overflowed.  A moment.  A  really awesome moment.  

Before we left, we went back by the power chair display and I decided just to put Sammie B in one whether she said "no" or not (sometimes, with her, we have to just do that . . . pushing her a teeny bit past her comfort zone).  She loved playing with the "up and down" buttons and making the chair go up and down, but didn't want to make it go, until I said "hey, how about you go chase Mia - maybe you can run her over?"  And, so it goes.   Mia was running around a big wide open area of the Expo and Sammie B was zipping around right behind her while B chased after Sammie trying to keep HER safe and not let her ram into anything (like a $49,000 minivan) while I ran after Mia trying to keep her from getting run over (by her sister in a 300 lb power chair).  With the sweetest, most incredible OT from Sweden (who worked for the power chair company) running around with us, thrilled for all of us.  Getting it.  Getting that this was the first time we were all just zipping around together, some running, one wheeling, but either way . . . zipping around.   Chasing and being chased.   I can't think of any more perfect moment than that one.  

Sammie B trying out the purple manual chair; Mia didn't want to be left out!


Kim said...

That is fabulous! It's great to hear about her taking off and getting to do something so natural as chasing Mia as hard as it can be to see how it needs to happen right now.

laurelsmom said...

you know, making someone's life easier with adaptive equipment should be medically neccessary. By definition, it's a medical condition that creates the disability and makes life harder to begin with. Boooo on the insurance companies. There are just phrases that have an out of tune ring to them. When you hear that sound, you know its a preface to "you're about to be screwed": Phrases like "medically necessary" and "free and appropriate education".
In other news, you made me spit my coke out with "maybe you can run her over". Oh the laughter. As always, I love reading about your amazing magical wonderful girls.

Proto Attorney said...

There have to be resources out there to help outside of insurance or medicaid (although they're probably income-based). One of my best friends from law school is disabled, he has a power chair and has limited mobility in his arms. He was able to get a van just when he started his job, that is controlled by track pad, which is way cool, so he can drive himself to work. I know he didn't pay for it himself, he's a prosecutor. I'll have to ask him next time I see him.

Erica said...

oh mama! this one got me. i love you!

schlennerfamilyof4 said...

just getting on here. Love this crying here!