One Year Later

I can't believe it has been a whole year. One year. It was one year ago today when we learned you had Spinal Muscular Atrophy.

One year ago when a neurologist whom we'd never met before tested your little legs, your muscles and your nerves. When he was done, he gently but nervously told you how good you were for him. Then he turned to us and revealed the suspicions he had had since I first took you there four days before, but he couldn't yet confirm. He gravely told us that your motor neurons would eventually die because they are missing a protein necessary for their survival. He told us that we would need a pulmonologist. He told us to go see a research doctor in Dallas. He told us to enjoy you for as long as we could. None of these things seemed to string together, to make sense to us, in our state of sheer pain and grief.

One year ago tonight, after you were asleep, we sat on our patio and cried until our faces were stinging, chapped, sore. I smoked cigarettes until my lungs ached from smoke breathed in through heavy sobs.

We got a pulmonologist. We saw the research doctor, who had virtually nothing to offer. We signed up for physical therapy and occupational therapy. In September, we had a g-tube placed in your stomach to feed you when you became too weak to swallow safely. In December, we were lucky enough to watch survive a 2 1/2 week hospital visit for aspiration pneumonia. After that we were able to justify to insurance your need for a bipap ventilator to help your weakened breathing muscles, as well as other respiratory aids and nursing support.

We now have everything we need to help you overcome a cold, allergies, or anything else that is within our control. We now have help for you from home nurses. We know exactly what is supposed to happen as this disease progresses. It all strings together now, and in some fashion, it makes sense. We will never unlearn the things we have learned to do to care for you--the feeding bag and pump, the cough machine, the suctioning of your nasal secretions to keep you from choking.

What we have to do means nothing, because one year later, all that matters is that we still get to see your sweet, smiling face. We get to talk to you, hear the associations you make and the little words you say, help you with an iPad game, position you, swing you, bathe you, and move your limbs. We get to come up with new experiences for you, like the beach or the zoo. We get to watch Pocoyo with you, and relish your beautiful face in its utter delight. We get to make you as happy as possible, every day.

We are blessed beyond our wildest expectations.

The Hierarchy of Horrible Decisions

In December, a little cough of Dylan's sent us to the hospital for what turned out to be a 2 1/2-week trip, complete with lung collapse, intubation, having "the talk" with doctors, having "the talk" with Colin, and then watching Dylan fight his way back off the tube to come home with us on December 22.  It was at once gut-wrenching and exquisite.  So when I returned to this blog and found this draft, which I originally started in November, I realized that it wasn't meant to be finished until now, after making the decision to help Dylan's now-weaker breathing with non-invasive bipap ventilation and daily respiratory therapies.      

The word "decisions" has taken on a new meaning for us. 

As we all do, Jason & I make literally hundreds of decisions every day, every week.  What to cook for dinner...which phone calls can be made today or wait until tomorrow...how to handle a coworker or client who is unhappy...whether to enroll Colin in Taekwondo...what to watch on the DVR before we go to bed. 

On the larger decisions, we are masters at the process. It's almost a pasttime, really. We noodle, discuss, research, state our cases, and ruminate until we come to a well-planned, logical decision, then execute. Even with the fun stuff.  We relish in wondering, Should we rent a house in Flagstaff next Christmas so that Colin can see snow?  How soon should we get the travel trailer?  When we retire, should we stay in San Antonio and buy a condo in King William or move somehwere else?  How old should Colin be before we take him to Europe?  Jason & I each have our wild, dream-filled inspirations and our periods of more rut-driven cynicism, sometimes counter to each other in this sort of dance of balance--one bringing the other down to reality when ideas get too out of control (i.e. expensive or risky), and at times inspiring the other to think bigger. 

Lately, though, the word elicits anxiety.  I have heard it at almost every doctor's appointment from specialists who manage different sub-specialties of his care.  The standard line is: "As Dylan progresses through the 'disease process,' you will be faced with a number of decisions you need to be thinking about now, so you can be prepared."  What they mean is, as his body grows and demands more of this protein, this lifeline to muscle development--the one produced by a gene that is so tragically missing from his body--he will become weaker and need more assistive devices, largely respiratory, to stay alive. 

And while the next typical line, "There is no right or wrong answer," is supposed to be comforting, it isn't.  Because everyone has in their minds a theoretic sense of the right answer.  I did, before I had a child with SMA.  If someone had told me my story two years ago, I would think I knew the exact answer.

After overdosing on "research," i.e., reading dozens of blogs by SMA parents about their kids' journey with SMA, and talking to a few SMA moms, all I did was sink into depression.  There is no way to be prepared.  Because, simply put, these decisions just crush your bones, compress your heart with excruciating pain, water-board you. 

And they're terribly controversial.  And no matter what you decide, you will be judged, and you will have periods of regret for not going another way, and you will wonder for the rest of your life if the outcome would be different had you chosen Door #2.  For every person who believes that any respiratory assistance (which ranges from non-invasive ventilation with a nose mask to full-on tracheostomy) is prolonging life against God's wishes, you will find another who believes that if you aren't using every single medical tool or procedure available to keep your child alive, then you are doing them a disservice by not hoping enough for a cure, not praying enough, advocating enough for their life. 

And then a slew of us are somewhere in the middle.

Some decisions are, oddly, universally agreed on.  We made one of these early on--to feed him through a tube because his swallowing muscles became too weak.  I have never read a case where someone decided to "let nature take its course" when it came to feeding by g-tube. On some primordial level, we mostly agree that letting a child starve is inhumane.  I don't get why I got it, but I got it.  It also buys you time with them, which I think is what really drives the decision.  After that decision, which is often the first to make with SMA, the waters of humane versus inhumane are murky at best.

In December, we brought Dylan home with a bipap ventilator to help him have strong breaths, while he can still initiate them.  By strong, I mean that he takes in enough oxygen and blows out enough carbon dioxide, which is what SMA kids can't do by themselves at some point.  We also give him respiratory therapies every day to help his lungs stay open. We hope that these things will help him for a long time, but realize that it's actually not up to us.

So here's what we did decide: We are not going to waste time doing anything that doesn't give Dylan comfort and pleasure, doesn't keep him safe, doesn't help us connect with him. We will also let Dylan show us what he can do or no longer can do, when he's happy to be here and when it is too hard on him. 

So far, his bright eyes, babbling and big smiles show us how happy he is to be here.  And we are grateful for every day of it. 

Songs

Since Dylan's been diagnosed, I have been struck by certain songs I hear on movies, TV and such.  They stop me in my tracks, usually bringing tears to my face, because of lyrics that hit home about the road we're on with Dylan. There's some odd comfort in the fact that I am never seeking these out--that I'm just caught unaware in what was otherwise a moment of escape and enjoyment from a TV show or film. Odd, I know. But perhaps it just keeps me from being too numb.

Last night I was watching a few minutes of the film "Crazy Heart" while I was giving Dylan his Pulmicort nebulizer treatment. The movie is pretty good, and I've always loved the music. Neither the story line of the movie or the song itself has anything to do with our situation. But these four lines in the chorus of the film's main song, "The Weary Kind," made my face burn with tears.

This ain't no place for the weary kind
This ain't no place to lose your mind
This ain't no place to fall behind
Pick up your crazy heart and give it one more try

I feel like that when I've had two doctors' appointments and two PT/OT appointments in one week, had to discuss his eating, movement, breathing, and the disease progression with too many people in a short amount of time. I feel like this when I am juggling an hour-long conference call, Colin school pickup and feedings all in a two-hour period and I realize I haven't just hugged him or made him smile in that time. I feel like this when I look at pictures from just a few short months ago, where he's holding up his own head in the high chair or moving his arms better. I feel this way when I try unsuccessfully to get him to click a switch toy with his tiny fingers.

It's an anthem for not breaking down.

Songs like this one do as good or better a job of describing how I'm coping sometimes--a fact that the songwriters would probably feel very special about, and should--whether or not they'd ever imagined my interpretation.  This and a couple of other songs I'll write about here are now part of the tapestry of our story. 

You can hear this song here performed by one of its writers, Ryan Bingham, if you're so inclined.