Home

There’s a street I drive down almost every day to get back home from pretty much anywhere. It’s not a pretty one. Rundown houses and boarded-up taverns sit across from massive parking lots and big-box stores. It’s all concrete and gas stations and tiny storefronts, and the traffic is always terrible. I can remember so vividly the first time we drove the length of it. We were blindly following the GPS, heading to look at a house that we hoped to rent, a place to call our own after living in my parents’ basement for the better part of a year when what was supposed to be a short maternity leave turned into a nightmare of diagnosis and birth and my baby’s chest cracked open twice before he celebrated his first Christmas.

The whole world looked grey that day. We were facing the looming prospect of Ethan’s second surgery, walking the tightrope we call ‘interstage,’ that fragile time after the first operation when it feels like just looking at them wrong might be enough to make it all come crashing down. We had left our former life (as volunteers on board a charity hospital ship off the coast of West Africa for the better part of six years) with no idea that we’d never go back. I walked down the gangway into the hot, Congolese night, carrying only what I could pack into two suitcases, fully expecting to be unpacking again in my tiny cabin a few months later. But then, without the faintest whisper of warning, words like ‘heterotaxy’ and ‘complex, critical congenital heart defects’ wrenched everything that I’d ever held dear out of my shaking hands, and for some reason, on that gloomy day in November, the reality of it all was almost enough to suffocate me.

I didn’t want to live on land. I didn’t want to leave the vibrant community on board the ship, the community I was planning to surround myself with as I raised my children. I certainly didn’t want to be unceremoniously and irrevocably thrown headlong into this very different community, the one made up of mamas and papas fighting for their children’s lives against the shadowy spectre of heterotaxy.

I wanted to go home.

Home. To the ship and the wards and the familiarity of the ever-changing view outside my portholes. To the place where I cared for broken babies at work and went back to my cabin afterwards, certain that I could never find the kind of strength I saw in their mothers. I wanted to go back to the time before everything changed, but the vast, yawning canyon between now and then was deeper than death, and it felt like my heart was breaking all over again every time I thought about how much was wrong with my son’s. There was no way back.

I drove down that street this morning. We had just made a surprise visit to the thrift store, and the kids were happily looking through new-to-them books when Adele came on the radio. Shrieks of pure joy erupted from the back seat, and when I glanced in the mirror, both of them were holding imaginary microphones and lip-synching as though their very lives depended on it. We passed the tiny post office where the woman behind the desk knows my children by name and always has scraps of paper for Zoe to colour on while we take care of our business. We stopped at the light in front of the hole-in-the-wall restaurant that sells what I’m pretty sure is the best fried chicken in a fifty mile radius. My favourite tree, the huge one next to the tavern, reached its bare branches over my car, and I could picture the way it had looked through all the seasons, from the impossibly bright green of a nascent spring to the vibrant, red leaves that fell on us like a prayer through the fall. Zoe chanted the names of the side streets as we passed each one, calling out triumphantly as we passed the house with the purple door that we were almost home.

Home.

It looks nothing like what I expected, but as we’ve slowly filled these empty rooms with the things we’ve collected and covered the bare walls with still frames and memories, my feet are finding their way on this solid ground. I look back over the days and weeks and months between then and now, and I’m someone I barely recognize. We’ve been given the indescribably precious gift of time, and it has changed everything.

Time, when you’re spending it in the company of a medically fragile child, is a strange thing. There are stopping places along the road where it all but stands still, and you’re left staggering under the impossible weight of lost innocence for what feels like forever. There are sudden flashes of pure joy where everything is right with the world, but then you blink and it’s over and you’re left wondering whether you imagined it all in the first place. And there no way to know, just by looking at the clock, which one is coming next, so you put out your hands and you take what you’re given, and you hope with every fiber of your being that you’ll be strong enough to hold all of it.

And this is the beauty of this life, a life without guarantees. Every second of it is precious because none of them were promised. Every hour is made of gold, the awful and the awesome alike, and I think the reason I can’t see myself when I try to look back to before the day when everything changed is because I’m blinded by the truth of everything that’s come after it.

And the truth is that I’ve found my home. It’s the memories of the years spent on the ship, and it’s the pool of sunshine on my living room floor where my broken-hearted boy and his big sister sit together and play. It’s the hallways of the hospital where they cut him open and pieced him back together again, and it’s the playground where we jump in mud puddles. It’s here and there and everywhere in between, because when you’re not promised tomorrow, home is just where you are today.

Welcome home.

(Ali Chandra - Mom to Heterotaxy Hero, Ethan)