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.


   

She Nailed It

It's been awhile since I've blogged, clearly--and I have about five different drafts that I need to flesh out and finish.  But, for now, I wanted to share a great story that a friend sent me by the mother of a boy with Tay Sach's disease.  It is dead on, and worth reading.  Please enjoy. 

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html

Today, I'm grateful*

*Written at Methodist Children's Hospital after Dylan's feeding tube surgery.

Today, I'm grateful for modern medicine, that it will allow Dylan's quality of life to be better by sparing him the exertion of sucking and swallowing his nutrition from bottles. His life will be that much nicer  through spoonfuls of ice cream and mashed potatoes, and through eating at the table with his mommy, daddy and brother. 

Today we no longer worry that he's not getting enough calories.

Today, I'm grateful that we had no surprises during the night--no drops in oxygen levels, fevers, infections or other issues.

Today, there is no more forgetting that we have an SMA child--no pretending that our lives fit the typical definition of "normal." We are solidly, undeniably on a path that doctors call the "disease process."

Today, I feel the weight of learning how to use the tube--how to feed, administer meds, and what to do if it comes out.

Today I feel an even greater responsibility toward Dylan than ever.

Today I am eager to start slow feedings, because it will make Dylan happy, and it is one step closer to going home.

Today I thank the family and friends who prayed, texted, called and walked with us through the last 24 hours.

Today I miss seeing Colin in the morning, and I miss my bed.

Today my heart is lightened by the return of Dylan's gummy grin, feet flapping and babbling through the morphine fog.

Milestones: Dylan's Feeding Tube

Dylan has surgery to inset a feeding tube on September 20, and we couldn't be happier.

Before you get sad reading this, hear me out. Before the diagnosis, if someone told me that about their child, I would have fought back tears. But what a feeding tube represents for parents of an SMA child is a happy milestone. See, with SMA babies, the act of eating--of getting the proper nourishment by mouth--is a significant challenge. Eating means sucking and swallowing, an exercise that can be very tiring for both the baby and the parents. It means expending calories as you are taking them in. It means having to stop in the middle so your baby can rest from the strain--sometimes several times during one bottle. It means eating less and less each bottle over the course of time, and therefore more bottles and more frequent feedings in a day to get the necessary nutrition needed. It means struggling more as you grow--as you need even more. It means not getting yummy baby food that day if you haven't consumed enough nutrition from formula.

But a feeding tube means getting your calories without working so hard because they are pumped directly into the stomach. It means you can get fed part of your daily nutrition at night while you sleep--leaving daytime for play, tube feedings that don't tire you out, and eating fun foods like pureed fruit and ice cream by mouth at the table with mom, dad and brother (if you're an SMA child who can still eat by mouth, as Dylan is). It means Dylan can be weaned off bottles (and parents can be spared the preparing and washing of them). It means growing faster and (potentially) having more energy to play Peekaboo Barn on the iPad--which totally rocks. 

It's the closest to mirroring the regular milestone of weaning your child off the bottle.

With an SMA Type 1 baby, your concept of milestones is turned on its ear. Accepting the feeding tube as a benefit is a major step of acceptance with SMA.  Essentially, you must alter your thought process to accept a new definition of milestones, so that your child can still be enriched by pleasurable experiences. I look forward to feeding him mashed potatoes much like I look forward to pulling him in his first wagon ride--which I'll accomplish by placing his Tumbleform chair inside the wagon and securing it around the sides so he doesn't fall out.

It's a practice akin to starting yoga, in which you have to contort your body into positions that are not normal for you, and you practice them over and over, and they get easier. It's no coincidence that people refer to yoga as a practice. You may get good at those positions, but there are always more, new positions you have to adjust to doing, and in that practice you open up physical and mental pathways you never knew you could.

I now look for new ways to help him swing, bounce on the trampoline (in my arms and very gently, of course) play, sit. I never would have let a 10-month-old use an iPad before Dylan, but his touching the screen to make the next barn animal appear and make a sound is his way to play.

Thank God for feeding tubes, and Thank God for Dylan.

Float like Chuck E., dance like Colin.

This one's about Colin. Mostly.

We had Colin's 6th birthday party recently, at Chuck E. Cheese, with about a dozen of his closest friends. As my stepmom says, you invite a bunch of kids to a party where they don't even play with each other--which is completely true. They run around like monkeys to their favorite games and may not even so much as smile or laugh in their friends' directions until they're corralled for pizza and the sugary cake high. But Colin ADORES Chuck, and it's a mess I don't have to clean.

This experience usually feels a bit painful for parents--it's noisy, there's no alcohol, and it's a complete roller coaster of kids, gifts, greeting parents, being moved along by the staff to keep it within the two-hour limit and, of course, the Big Mouse.  But this time, I think I had the best time of my life.  For two reasons:

1. All Colin wants to do is dance, dance, dance. And he got to do that.  He could care less about most of the games, prefering instead to stand up on stage with the animatronic Chuck and get his groove on.  I looked up at one point to find him doing a Dieter-like Euro waving move with his arms to the kiddie version of "I Ran" by Flock of Seagulls. Nice.  Plus, he stalked the big silent Chuck that comes out to dance until he got maybe ten hugs. Besides not getting the answers he wanted when he quizzed the voiceless giant mouse ("Why don't you talk? Say you love me!"), he was wildly happy through the whole party. And those little dance moves I used to take for granted make me want to cry out to God with sheer gratitude that Colin can actually do those things with his arms and legs.

2. This is the second thing that made my day:
 

Colin went wild over this little balloon, and so did I. I mean, how cool is it that Chuck can stand up and even walk?  (You just have to move his feet for him). Colin got to take home a little buddy. And Chuck's staying power is amazing--he was still floating around the house after 2 1/2 weeks.

Mostly, I looked at that little balloon and thought about Dylan.  For a few minutes, I stopped wondering all the things that pervade my thoughts nearly every minute of every day-- how long he'd be on this Earth, what medical ailments and challenges he (and we) will face ahead that will threaten his life and further weaken his muscles, if we're doing things right for him, if we're doing enough for him, how much everything will cost, or how Colin might suffer. 

I only thought, wouldn't it be cool to have a helium apparatus like that to strap Dilly into and let him float around as if he were standing up? The thought of my little guy getting a ride like that made me giddy for the joy that would provide him.

The balloon also reminded me that just because you might not be able to sit, stand, walk or even move on your own, you can still be perfectly happy.  And dearly loved.

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.