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.

Letter to my son

I love you, Dylan, for your big, gummy smile, sweet babbles and raspberry noises when I come in every morning to unhook your feeding tube and take you out of your crib for the day.

I love you for letting me squeeze, stretch and tickle your chubby legs and feet.  I love you for tolerating my clumsiness with your little, not-so-chubby arms and floppy head when I pick you up.

I love you for loving Yo Gabba Gabba, Franklin and whatever else your big brother wants to watch.
I love you for crabbing at him when he gets in front of the TV or when your show is over.

I love you for your fingernails and sweet, wavy blond hair, both of which grow so fast!  It amazes me how a child who can't swallow or move his limbs very well can be so healthy in places.

I love you for squeezing my finger as hard as you can, in lieu of being able to hug my neck.

I love you for charming everyone who meets you with your beautiful blue eyes, which you got from your Grandpa Kenny. You manage to drop your chin just enough and peer upward sweetly, and you've got 'em in the palm of your little hands. You've got me there, too.

I love you for being so content even though your condition makes you sweaty and warm, some days so badly the hair is wet on the back of your head.  I love you for babbling with glee when you get to feel cool, fresh air on your body or the warm water of your bath.

I love you for being so relaxed and comfortable in the bath that you poop and make me change out the water.

I love you for sleeping through your nightttime tube feeding, even through the hooking up.  You didn't even awaken when your Grandma Zona and I were so worried we held my iPhone flashlight over you to see if your tube was in place and if the food was flowing through.

I love you for letting Colin clumsily kiss your face and hug you every night, sometimes hitting your tube spot by accident. 

I love how you have made Colin a sweet, tender big brother.

I love you for not being cross when I have bad days where I can't bring myself to exercise you or play with you as much as I should--for starting your cartoons over so that I can get one more work email out, or one more call to a doctor or the insurance company, one more bill paid. Or even just to cry in the next room because it's a particularly sad day and I don't want you to see.

I love when you sneeze and smile afterward because it tickles your nose.

I love that you are so good for the ladies in the chruch nursery, so that your dad and I get much needed worship and spiritual guidance.    

I love you for laughing when you see the baboon on the "Peekaboo Wild" iPad game. 

I love you for the way that this terrible disease has reordered our lives for the better.  I love that you and I can pick up Colin from school, that I can now start dinner earlier and help him with homework before dark.  I love that because of you, I can be a better parent to Colin than I was before.  I love that I am the one to take care of you, that I can represent your best interests to health care providers, that I can invent new games and ways to play with you, even that I can clean the house with my own hands to assure that you are in a clean and safe environment.  These things are by far my most important job--the hardest, most rewarding and most life-changing thing I have ever done or will ever do.

I love you for every day that you are with us, for every motor neuron in your body that hangs on and for every one that doesn't, for every good day and every bad day, for every tear I shed, and for every smile you give that takes my tears away. I am honored that I am the one who gets to take care of you, stroke your hair, make you laugh, and love you for as long as God has allowed you to be with us.

I love you for the awesome gift that you are to all of us.