Monthly Archives: July 2015

Some Are Born To Sweet Delight

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.

The Myth Of ‘Fixed’

I’ve just spent the last half-hour staring blankly at a magazine article entitled “The Myth of ‘Fixed’.” I want to stop, because I’m starting to feel that sandwich I ate for lunch make an encore appearance, but it’s like watching a train wreck, or an episode of Honey Boo-Boo; I can’t turn away. And every few minutes, a phrase leaps off the page and whacks me solidly between the eyes:

“…about 85% of the roughly 40,000 babies born each year with congenital heart defects in the US will live to see their 18th birthdays…”

“not so long ago…kids born with hypoplastic left heart syndrome would simply not survive – the oldest person living with this defect is in their early 30s…”

“On top of the multiple surgeries, heart rhythm problems, developmental and psychological issues, strokes, and other medical issues they may endure, adult survivors also contend with lapses in care, insurance issues, doctors who are unqualified to handle CHDs, and a variety of other unique concerns.”

The myth of ‘fixed.’ It’s a lovely myth, and one I’ve been holding on to for over a year: Malcolm is getting fixed, and then he’ll be fine just like all the other kids and we’ll move on with our lives. But, like Atlantis and fat-free desserts and “God will never give you anything more than you can handle” (a detestable phrase), it is just a myth after all. I realize, now, that Malcolm will never be really fixed, not completely. Oh, he’ll be patched up and jury-rigged. He will be given second and third and fourth chances at life, and odds are he’ll live to a respectable age with his wonky, duct-taped heart valiantly pumping away. But nothing is going to change the fact that his heart is a hot mess. Nothing can alter the reality that valves and arteries are in all the wrong places, and one ventricle is worse than useless, and the whole thing looks like it was assembled by God’s three-year-old nephew, Rick.

I’m scared.

Repair of congenital heart defects is such a new science that there aren’t even cardiologists who specialize in care of adult survivors. That’s not a thing. Traditional cardiology students receive, on average, six hours of training in pediatric heart defects. Six hours. That’s over seven years of med school. Which means that adults with Malcolm’s condition currently have no one to go to when things go pear-shaped. Add that to the fact that no one knows what the heck happens to these kids after they turn forty (at the most), and you’ve got a recipe for disaster. Will Mal live to be a dad? Or a granddad? No one knows.

I usually try to stay pretty positive, first because it’s better than wallowing in a tepid pool of mud and despair, and second, because the minute I say anything negative or sad I get blasted with the deadly ray guns of good intentions. Horribly hurtful little word projectiles, like “Just trust God,” and “Malcolm is in good hands” and “It doesn’t do any good to worry about it” and “Try to stay positive, because it’s better than wallowing in a tepid pool of mud and despair.” What they’re really saying is, “You are making me uncomfortable. You are not playing the game. We’ve all signed the contract that says we have to make the best of things, and you are in violation.” If there is anything that people hate, it is the person who refuses to keep up appearances when life becomes bitter. That’s why everyone raves about the cancer patient who stays strong and cheerful; everyone likes the widow who learns how to move on with life, or the Joni Erikson Tada who forges ahead in the face of terrible suffering. I get it. Redemption is great – it’s the best, really. We all want to see something beautiful grow from the dung hill of life every once in a while. But believe me, sometimes dung is just dung, and you have to live with the smell of the whole putrid, rotting mess for years before it starts to resemble fertilizer. I’m going to have to tell my son someday that his future prospects are unknown, that what awaits him may not be college, marriage, and kids, but a long, agonizing wait for a heart transplant that may never come, or a debilitating stroke, or a long, drawn-out convalescence. And that is NOT okay. And I am NOT going to act like it is.

Do you know why I really like Jesus? I mean, apart from his deity and perfection and all that stuff? I like Jesus because his first words to the widow who lost her only son were not “Can’t you have a little faith?” or “He’s gone to a better place.” I like to think he enveloped her in a big hug and held her tight and let her sob it out before simply saying “Don’t cry.” I like Jesus because when Mary and Martha told him about their brother’s death, he sat down with them and bawled like a baby. Jesus knew that this stuff wasn’t okay, and even though he was in a position (none better) to know that everything would turn out for the best, he didn’t force that knowledge on anyone. He just let them cry, and joined in for good measure. Do you know what I think? I think God is okay with bitterness and anger and despair. God can handle it, believe me. It’s we who are too fragile to let it near us, too weak to grasp the hand of suffering and walk with it for as long as we must.

I confess, life is hard right now. I feel scared and hopeless today. Malcolm is…well…the sweetest creature you could ever imagine, with two cute teeth, one on top and one on the bottom, and two lopsided dimples, and a weird cowlick that parts in the front and makes him look like Thomas Edison. I love him, and I love his weirdo personality, and I love his crazy, stupid, ugly mess of a heart.  I wish he was okay, but he’s not, and neither am I. We might not be okay for a long, long time, and that’s the way it is right now. I am done buying in to the myth of ‘fixed.’ So I ask, will you let us be broken? Can you handle that?

I know Jesus can, and I think I can too.