Sunday, August 21, 2011

Into the Woods . . .

"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach . . . I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, to reduce it to its lowest terms, and, if it proved to be mean, why then to get the whole and genuine meanness of it, and publish its meanness to the world; or if it were sublime to know it by experience, and be able to give a true account of it in my next excursion." -Henry David Thoreau, from Walden

This is a hard post to write. Until now, I've consciously decided to devote this space to documenting the sublime: the smiles and triumphs and joys of our lives. I've trained my mind to focus on the beauty that comes with raising our children and watching the story of our family unfold. I've glossed over the hard because, well, that's stuff I don't care to remember once these precious years have passed. The meanness of life has always lurked in the shadows, as it does for everyone in one way or another, but it's never defined us. It's not our story.

But life is complicated and sometimes the hard stuff is so game-changing that glossing over it would be dishonest. Sometimes the only thing you can do is surrender, survey what's been damaged or lost and figure a new path forward. That's where we are today -- past surrender, surveying the damage and taking our first uncertain steps down a new road.

Okay, so what am I talking about? Our precious 3 year-old little Kaden was casted for progressive infantile scoliosis on Friday, August 12th and it's been really hard. Heartbreakingly hard. For everyone. Especially him. But this little boy is amazing and his spirit is mighty and simply will not be crushed, which makes me happy and hopeful at the same time that it makes me sad to know that quality was born of pain and necessity. He is my hero, an absolute giant soul, and I'm so proud to be his mother.

To backtrack a little, I've mentioned here before that Kaden has progressive infantile scoliosis, hypotonia and global developmental delays. I've not mentioned here before that Kaden remains completely non-verbal and is believed by many of his doctors and therapists to have a sensory processing disorder that may or may not be related to an autism-spectrum disorder (ASD). The long and the short of it is that he's had to work extremely hard for every inch of everything when it's come to his development. We've had daily therapy since he was less than a year old: PT, OT, ST, special instruction, craniosacral, you name it and he's done it.

Unfortunately, we found out in April that his scoliosis had once again progressed. Left untreated, progressive infantile scoliosis can compromise heart and lung function and even lead to death. Obviously, doing nothing was not an option. After taking him to another city for a second opinion from an orthopedist on the cutting edge of infantile scoliosis, we decided to begin serial casting of his spine in an effort to regress the curve and, hopefully, avoid or delay dozens of invasive surgeries throughout his childhood and adolescence. Though serial casting, which requires a non-invasive surgical procedure every 2-3 months to adjust his spine and apply a new cast, is not an easy process, it's definitely the lesser evil of all the options available at this point.

We tried everything we could to prepare Kaden for his first casting but I'd be lying if I said that any of us were totally prepared. It's just one of those things -- you can't really know how it's going to go until you do it. We'd seen YouTube videos of other kids in casts who were up and walking within 24 hours, smiling and laughing as if nothing had changed and I guess it was sort of appealing to think things might play out that way for us even though deep down we feared it wouldn't be that simple. And nope, of course, it wasn't.

The first few hours after his casting were awful but not really because of the cast. Kaden had swelling in his throat from being intubated under anesthesia and the restriction from the swelling caused him to panic and hyperventilate. After a few scary moments with doctors and nurses hovering to administer a nebulizer and steroids, Kaden's breathing stabilized and he went into a deep and peaceful sleep.

Despite my relief that he was stable and asleep, my own anxiety began to shift into overdrive. See, I'd lifted Kaden out of his bed when they first brought him out and had felt the weight and stiffness of the cast. How on earth was my baby going to move in that albatross? And how was he going to react once he was coherent enough to understand his new, very different situation? We waited and worried at his bedside for hours. As expected, Kaden was absolutely miserable when he awoke. He refused to eat and laid motionless in bed while his eyes dripped with the biggest, saltiest tears I have ever seen.

Kaden's cast begins immediately under his arms and goes down to about an inch above his groin so he is no longer able to bend at the waist. It's very tight and anchored to his hips, sort of like a corset, which makes diaper changes messy and unpleasant for everyone. In those first hours after surgery it felt SO heavy (we've since learned that it takes 24-48 hours for the plaster to dry completely, and that it feels much lighter once fully dry) and our skinny, exhausted and petrified little boy seemed convinced that he would never move again.

The hospital would only allow one parent to stay at his bedside overnight so I sat alone with him in the dark as he drifted in and out of sleep. Late in the evening, Kaden held my hand and looked at me with big soulful eyes that said "Mommy, I can't move. I'm so scared and I don't understand."

I tried to reassure him. I told him I knew he was scared and I knew it was hard but that he was going to be okay. I told him that he needed to eat and sleep and build up his strength to get moving again and that daddy and I would be there every step of the way. I stroked his hair and kissed his cheeks and read him books until he fell asleep. And once I was sure he was in a deep deep sleep I went to the bathroom and sobbed the kind of gut wrenching sobs that only come a few times in a lifetime.

It's been a week since we left the hospital and Kaden has already made dramatic improvement. We saw his physical therapist everyday last week and he's slowly re-learning how to crawl and sit up on his own. It's going to be a long and difficult road but, as I mentioned earlier, this boy has a mighty mighty spirit and refuses to let this obstacle defeat him. My heart swells with pride whenever I see him get up on his elbows or pick up his tush to move across the floor. He smiles every time he does something new. My baby is awesome.

So, here we go, into the woods and back up a mountain we've already climbed to slay a dragon we thought was long dead.

Wish us luck . . .


Momttorney said...

Oh, mama! This made me cry. You are so very right - the hard times will NOT define us (nor will they define our children). The joy, giggles and love will define us. Thinking of you and that magical little man.

Melissa said...

You have an amazing and strong little boy, and he has an amazing and strong mom. Keeping all of you in my thoughts.

Lia said...

I have been thinking of you! So sorry that Kaden has to endure this completely unfair discomfort, and that you have had to worry and see him in pain.

But I love that he is already smiling and learning his way around this new inconvenience. That's the sign of an awesome spirit, and the amazing parents behind it. Go, Kaden!