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Saturday, October 22, 2011

"How do you even stand yourself?"

Kyle woke up screaming for me to turn him at 0'dark-thirty today.  It was completely dark outside, yet he greeted me with the silliest wide-eyed massive-grin face.  I was grumpy about having been woken up, but his expression lightened my mood.  As I turned him, I told him, "Dude, you are a crack-up.  How do you even stand yourself?"  He let go of the silly face and informed me, "Momma, I can't stand."

Kids can be so literal that it hurts.

Our 6th Annual Arizona Walk N Roll to Cure SMA is upon us.  This year marks our third appearance at this Walk N Roll.  Last year we couldn't all attend, as Lauren was in the hospital fighting pneumonia.  The rest of us crusaded on at this Walk without her, to help raise money to cure this terrible, terminal disease.  Six months later her twin brother also spent a couple weeks in the hospital with pneumonia, and that's when I realized that we can expect at least one hospitalization per kid per year.  And somehow we've gotten lucky--so many SMA families spend ten times that in the hospital every year.

What did you do with your kids this summer?  Take them to the beach?  Road trip to see grandparents?  Sleep in and enjoy the lack of rigid routine that the school year typically brings?  For us, we had no less than twenty six doctors appointments for the twins this summer.  We kept up with their neurologist, pulmonologist, gastroenterologist, orthopedic surgeon, general surgeons, and pediatrician during the summer.  We also spent many, many hours this summer with the twins' nutritionist, orthotics specialists, and with the therapists and genius engineers at their wheelchair clinic.  Not to mention the hours I spent on the phone trying to coordinate these appointments, arguing with our health insurance company, and then driving us downtown for these appointments.  My twins have dealt with more blood draws, IV insertions, and surgeries this summer than most people will their whole lives.  They are trained how to behave in their wheelchairs in public.  They rarely deviate from my wheelchair rules because they know they could hurt someone, or themselves, if they do.  The public seems tickled with four year olds in wheelchairs.  I think the public assumes that they will always be in wheelchairs.  Terrible assumption.  It doesn't have to be this way.  That's what enrages me--as a mother, and as a person with common sense.

I'm not sure I can adequately express how much we hate SMA.  I hate this disease with every fiber of my body--a body which is strong enough to allow me to stand, walk, sit up, and even turn over in my sleep.  My twins can't do any of these things.  They are completely dependent upon us to do these things for them--including waking up multiple times per night to turn them over or adjust their hips to relieve the pressure points that their small bodies place on them.  The strongest "muscle" they have is their brain, though--it's doubtful you'll ever meet someone as smart as a person with SMA.

There is no cure for SMA.  There is no treatment for SMA.  There is no drug regimen to help manage the symptoms for people with SMA.  But there could be.  Soon.  Research in the areas of gene therapy, stem cell therapy, and other traditional drug therapies are in the pipeline.  This is exciting.  SMA is one of the very few muscular dystrophies which are [thisclose] to a cure.  A cure!  Can you imagine?  I can.  But even if a cure is found, each year that passes takes a toll on their skeletons, muscles, and organs.  Lauren is to the point where no injection of an insta-cure is going to fix her scoliosis, for example.

As I type these words I can hear Kyle's scraggly breaths as he sleeps.  His body is trying so hard.  I need to ease his respiratory system with the bipap machine but I can't sell him on it.  He doesn't want to be constricted with a face mask which blows cool air into his mouth, and it's not easy persuading a preschooler to do something he doesn't want to do.  He told me today that he can't wait until he gets bigger so that he can play baseball.  I keep telling him that it's not his age, it's his muscles.  He can't throw a baseball because he can't really lift a baseball--not because he's a baby, because he's not.  "But Momma, I can play baseball when I get bigger, so I can stand up and throw, and then I will hit it like Justin Upton and make a home run!"  I never tell him he won't, because what do I know?  Stranger things have happened.  Science is extraordinary.  Kyle is so proud of his Dbacks that he wants to be one, but I am the one who has to tell him that he will never stand.  He will never play baseball.  Even if his Make-A-Wish is to eventually throw the first pitch, he can't throw he ball more than a foot.

And Lauren, his twin sister who also suffers from SMA, is an absolute riot.  She has an incredible memory, would put Kate Middleton to shame with her style and manners, has a smile that lights up the room, and makes you want to give her candy.  How I know that is that we hang out at all kinds of places and people she meets feel compelled to give her candy.  Mostly, I wish that people felt compelled to ask her mother if giving her candy was okay.  This girl, I am telling you--if charm were a currency, she'd be a bazillionaire.  I hate even putting her to bed sometimes, lest I lose a great conversationalist.

But I will outlive both of them.  I can't change that.  What I can do is raise money (and disease awareness!) to help find a cure so that no other parent has to endure this diagnosis.  So that no more children are born with such a death sentence.  As a member of the board of the Arizona Families of Spinal Muscular Atrophy, I help coordinate this Walk N Roll and I need your support.  Join our Team Double Trouble and walk and raise money with us (email me to join the team), or simply donate to Team Double Trouble.  If your company could use our 300+ walkers knowing that you support our cause, contact me for sponsorship details (starting at just $500) and so that I can get your .png file.  I am also still looking for local firms to donate nifty stuff for our raffle--gift cards, merchandise, hotel stays, golf rounds, seats to theater or sporting events, services of any type.

This week also marks the three year anniversary of the twins' diagnosis.  October 26, 2008 is a date I won't forget because it's the date I finally allowed myself to Google "spinal muscular atrophy" after weeks of wondering.  The doctor warned me not to until the twins' blood test results came back.  Should you wonder why I don't want anyone else to have to Google it, just Google it.  And then join us at our Walk N Roll next month.  Let's work together to ensure that we don't need to hold these Walk N Rolls another year.

1 comment:

  1. I remember so clearly when you found out.

    I'm always here. And I always love you all.