Flight into normal

Within two weeks of the diagnosis, we were planning to barbeque.  

Let me say that again: We were thinking we were going to cook for people at our house within two weeks of learning that Dylan has SMA--a disease that FightSMA calls the "leading inherited killer of children under two."

I mean, after all, Memorial Day weekend was coming up, and my mom was out to visit.  The chest-crushing pain of the diagnosis we received on May 6 had ebbed slowly, just enough, to a tide of love and overwhelming gratitude.  Gratitude for all the prayers spoken for Dylan from Jordan to California and up to Canada. Gratitude for our family members reaching out to help.  Gratitude for Colin's good health and Dylan's daily presence.  Gratitude to our companies and our bosses for being so supportive.  Gratitude to God for for the miracles we hoped he would bestow, and for this mystery that, while we didn't understand it, we hoped would have some greater purpose that was meaningful and exquisite.  And dammit, now that we were getting used to our new life as SMA parents and really had a handle on it, we wanted to host a barbeque.  

We also wanted to go on dates, plan our next vacation, meet friends for dinner.  And we set about to do all these things--in the midst of a bloody slew of commitments.  Work (I was transitioning to part-time telecommuting so I could stay home with Dylan, Jason going gangbusters at his). Pulmonologist appointments.  Gastroenterology appointments.  Swallow studies.  Sleep studies.  Colin's weekly swimming lessons.  We were going to do it all.  Keep in mind also that we had no idea how fast or slow Dylan's condition would progress, or if we had more hospital trips ahead, or would have to start purchasing expensive medical equipment.. 

It was our feverish flight into normal.  

I first heard the concept of "flight into _____" from a counselor I saw several years ago.  We were talking about my sister, who struggled with manic depression and alcohol abuse throughout her life.  She had called me in a manically uplifted state describing a newfound happiness and peace.  She was doing yoga and accepting her body, trying to be more spiritual, not drinking, going to speed-metal concerts with some of her college students.  Heck, she might even just move to Cape Cod, or Canada, or Berkeley.  Her newfound happiness felt so forced, inauthentic, and I was worried that she'd crash.  My counselor called it her "flight into health." My sister tried to control or eradicate her sadness and destructive behavior by jumping full force--manically--into some model of a healthy pysche that she idealized. The "flight" was a surge-like overresponse to try to control what she really couldn't. 

And now, here we were, trying to manufacture a model of normal as well.  Zealously.  With white knuckles and clenched jaws. 

It was sort of a blessing that many of our "normal" plans fell through.  Oh, we have spent evenings with good friends and gone on dates.  We're grateful for those lovely down times. But with SMA, normal is a moving target. We have no clue how long he can eat by mouth without his swallowing muscles tiring and putting him at risk of aspirating food into his lungs.  Or how long he will be able to breathe without assistive devices.  Or how long he can lift his spoon to his mouth without his arm dropping in fatigue.

For us, as for Dylan many days, fatigue wins out over lofty plans. And that was normal life for us even before the diagnosis.    

         

Suck, swallow, breathe

I've had so many thoughts about how I would begin this blog, what I would write.  Really good blogs have formed in my head, but I've had to set them aside to focus on making the next Dr.'s appointment, calling the physical therapist, logging in to work.  You would think that such grand ideas would stay in your head until you can get them down.  Apparently that's not the case.  And since we've been dealing with our son's Spinal Muscular Atrophy for a couple of months now, it doesn't make sense to go back and drum up those old mental blogs.  So I'll just start at today. 


Tummy time was the first of many clues that we didn't catch.

A few months back, we used to joke about the fact that Dylan hated tummy time.  He'd cry for a few minutes, lay in his drool without lifting his head or propping up on his arms, and eventually fall asleep.  We'd share our concern, and no one seemed fazed--many told us their child never did tummy time and was JUST FINE.  And he seemed normal in every other way, at that point. 

So, we enjoyed the quiet respite his tummy naps provided and talked adoringly about how stubborn he was, and made trite jokes about which genetic pool contributed to that trait. Ha ha ha ha.  We're all so stubborn.  Isn't that cute?  (Seems like everybody claims stubbornness--it's a socially admirable trait.  But is everyone really that stubborn?) I even posted a photo of him face-down on Facebook.

Well, now we know why he wasn't pushing up on his arms.  We also know why he didn't bring his toes up to his mouth.  And why he seemed to struggle with feeding.  And why he was constipated most of the time. Every seemingly disparate issue he had was connected to his SMA. 

We don't think about most of these activities and what they draw from our bodies.  I certainly didn't.  But all of them require substantial muscle movement that Dylan struggles to support because of a severe deficit in a crucial protein--because of his SMA.  Just think of feeding.  The speech therapist who sees Dylan said to me yesterday, "Just think about how much it takes to suck, swallow, breathe.  Suck, swallow, breathe.  Suck, swallow, breathe.  That's hard work."  She's right.  I watched the X-ray of Dylan sucking, swallowing and breathing, and I felt like I was watching a lumberjack hack away at a redwood with every bit of his strength. 

However, Dylan's big smiles--often after good poops, like normal babies--remind me that it's not so hard that he can't enjoy his success with these things.  He can watch Chuggington wide-eyed. giggle at Daddy's whiskers on his little soft feet, smile at Colin and me at the dinner table, and play with his spoon--and even put it in his mouth. He can push buttons and play with light toys.  And he's not too weak to crab at us when he wants to be moved, or wants more baby food, or doesn't want to play with a certain toy anymore.  So, it turns out that he really is stubborn. 

I think he takes after all of us.