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To My Younger Self When My Son Was Just Diagnosed With Heterotaxy Syndrome

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It’s been more than two years since my son, Ethan, was diagnosed with heterotaxy syndromeIt was the day I found out my journey wouldn’t be the one I had expected. It’s the day I lost my home and my community and my job, and the day that I started an entirely different life on an entirely different continent than the one I’d been accustomed to.

I’m shaking my head as I type this. There’s an incredulous smile on my face as I look at how far we’ve come, while the rest of me is terrified when I think about how uncertain the road ahead of us still is.

I never thought this is what it would look like — this boy who defies the odds and grows at lightning speed, entirely unaware he’s working with half a heart, while I sit and watch in wonder. Every day, I watch my children play together with a lump in my throat because how is it even possible that we have been given this gift of time when on that day I was so sure I was watching it slip through my fingers?

I just wish I could go back to that day, to sit down next to myself in that dimly-lit room where I was so sure that my life was ending and tell myself a thing or two. And if you’re at the start of this journey, if you’ve just had your heart handed to you in a million jagged pieces, I want to tell you, too. I know there’s a very real chance you’re not ready to hear any of it, but this, as far as I can tell, is true.

I’d tell myself, and I’m telling you, that it’s OK to fall apart for a little while. I felt so guilty about that at the beginning, like I was failing this helpless baby who needed me to be strong for him, but the further I get into this journey (desperately praying every day that I’m still only at the beginning), the more I realize that emotions run so much deeper (and higher and longer and stronger and just more) when it’s your child’s life that’s in danger.

I’d tell myself anything I was feeling was the right thing to be feeling. That I had every right to ignore the people who told me that it was all going to be OK, to silently scream at the ones who offered meaningless platitudes, to lie and say that I was fine or tell the truth and admit that I was scared out of my mind. You don’t have to be happy or sad or brave or scared just because you feel like you should; it’s perfectly acceptable to be all of those things at once or none of them at all, and no one gets to tell you what’s proper.

I would stretch out my hands to my shaking self and offer to carry some of the weight of lost innocence. It’s shocking how massive the absence of something can be, especially something you never really paid attention to holding. But when your belief that “this only happens to other people” is wrenched from you in one swift moment, you’ll realize pretty quickly that it leaves a hole that’s black and terrifying and heavier than you can possibly imagine. And you’ll feel like you can’t even take another breath and getting up tomorrow morning seems about as easy as running barefoot up Everest, but there will be people who are brave enough to take off their shoes, too, and run alongside you. They are your lifelines; hold their hands and run (or walk or crawl or just sit for a while in stunned silence) together.

You know the darkness won’t last forever, don’t you? Impossible as it may seem, dawn follows dusk, winter gives way to spring and you will find your joy again. It won’t look exactly like it used to, and it will never feel quite the same; it’ll always be laced with that bittersweet knowledge that you are “other people” now, the ones without a guarantee, but that won’t make it any less beautiful. Just like the pain, your joy can be so much more now. Every single first is one more thing that wasn’t promised and that makes the smiles and the coos and the crawls and all the myriad other things you suddenly find yourself counting as milestones infinitely more precious.

Your life will be different. There’s no sense in denying that. It will be different and it will be harder and it will be lonelier and so much more complicated, but I want to throw my arms around myself, the one weeping in the dark almost two years ago, and tell you: “The best is yet to come.” You’re going to learn to love with a fire that burns away everything that doesn’t matter, and what’s left is going to be perfect (for your new, completely unorthodox definition of that word).

If Ethan’s heart had formed correctly, mine wouldn’t be shaped the way it is today, all broken and patched and reinforced with that special kind of steel that’s only to be found beside hospital beds and in waiting rooms and on the other side of endless, worry-filled nights.

His diagnosis stripped me of everything that didn’t matter and left me holding nothing but a love that had suddenly grown past anything I recognized, a love that was all at once fierce and stubborn and desperate and so much more powerful than I ever thought possible.

Not bad for a broken heart.

Ali Chandra's son, Ethan
Ali’s son, Ethan.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 30, 2016
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