It’s hard to explain the deep satisfaction I’ve experienced over the last few weeks, watching Malcolm start to crawl, and then get up on his knees, and then pull himself to standing with all the concentration and force of a new recruit passing his Army physical. It has been astounding and overwhelming, like watching the evolution of man on fast-forward. I’ve been privileged to witness an amazing metamorphosis as this – my own little underdeveloped creature – has forsaken slithering on the ground (you might call it army crawling – I prefer slithering) and gone on to stand upright, sounding his “barbaric yawp over the rooftops of the world.” I have a curious feeling of unreality. In fact, there are times when I wish Malcolm would regress to a time when he did not do pullups with my feet or yawp so barbarically.
All the while during this transformation he’s been huffing and puffing like the Big Bad Wolf, not because he’s craving a little pork, but because his heart (much like an amoeba) has not yet received the whole ‘evolution’ memo. This kid is unstoppable, and I’ve started recently to wonder why. It’s not because he’s a fighter with a will of iron. I mean he might be, later on, but that kind of motivation seems out of the reach of an infant. I’m tempted to think that his persistence is due entirely to the fact that he doesn’t know any better. No one has told him he’s lucky to be alive. As far as he knows, every kid has got a cool zipper scar and a raspy voice from one too many intubations. In short, no one has ever let the cat out of the bag; he doesn’t know that the things he’s doing simply can’t be done. And I’ll be darned if I ever let someone spill the beans.
Ten years ago – five years, even – the survival rate for hypoplastic left heart syndrome was pretty grim. In fact, many parents chose compassionate care (letting the baby die naturally over a period of weeks) over surgery. When Mal was first diagnosed in utero, both the cardiologist and the perinatalogist offered us the option of an abortion. I remember staring at the cardiologist and asking “Why? Why would you terminate a pregnancy if there were surgeries available to fix the problem?”
He shrugged his shoulders. “Some parents don’t want to go through the trauma, or let their baby suffer.”
“We’re not those parents,” I replied. I was unable to say anything more, but I tried, with my tone, to convey something larger: This child, like all of humanity, has the right to suffer and thrive. Let him have his birthright. I rejoiced to see a returning spark of fire in his eyes.
I’m grateful, now more than ever, that we chose the hard way out for Malcolm. Frankly, I think the bulk of the suffering in this situation so far has been on my shoulders, and Dustin’s, which is just the way it should be. Mal is blissfully unaware of the cost, exhaustion, and unbelievable heartache set into motion by his birth, altering the life of his parents, his sister, and all four of his grandparents in a way we can never recover from (nor would we wish to). My heart tells me that this is a special child. The great, rather morbid poet Blake tells us “Some are born to endless night; some are born to sweet delight.” I think that’s an oversimplification (and hard luck on the endless night folks), but he’s right, in a way. Only I think some people are born to both destinies, and little Malcolm Howard is one of those people – shrouded in darkness and suffering, lit up with joy and delight.
No one has told him yet that pain can’t walk with joy, and so he accepts them both with equanimity. He loves people; he loves life. He keeps on slithering until he has the strength to stand. And soon, I hope, he will run unswervingly into a bright and unusual future.