What My Son's Terminal Diagnosis Taught Me
The very first thing I learned when I was given the news my child has a fatal degenerative condition — and will be lucky to live until 30 — was that the heart and brain are incredibly strong organs.
I learned in that moment that, as your body floods with stress hormones upon hearing the worst news a parent can get, your heart still stubbornly beats — even as it breaks into pieces. Your mind refuses to check out; it stays put, absorbing the information on a technical level but unable to grasp the unthinkable fact: My child will probably die before me.
My son was exactly 13 months old — and I was one week shy of my 30th birthday — when a very apologetic geneticist told me my baby had Duchenne muscular dystrophy. This degenerative condition affects 1 in every 3,500 live male births worldwide and is usually passed from mother to son. In my case, a burgundy vial of my own blood offered up no logical source; there was no gene to trace back, just a freak instance of bad luck. Somewhere in the first seconds of my child’s conception, something had gone wrong.
Muscle by muscle, his body will fail. He will stop walking, will need to use a wheelchair. Then, he'll lose power in his hands and will finally need a breathing machine. There is no treatment and no cure.
It was news that forced me to reset the entire compass of my life. I came home and cried harder than I’ve ever cried while my son sat playing, oblivious. In the coming days, the delicate idea of a future that I had built around my motherhood shattered completely. Our life as we knew it was over.
And then, a surprising thing happened.
It started with the grain of hope that was still stashed away somewhere in my mind. Initially, it took the form of thinking the doctors must be wrong. But then it grew into something else. Having been plunged into darkness, hope was my only source of light. Hope, I learned, would be my single most important ally on this journey.
Time passed. My heart kept on beating. My child grew and began to miss milestones. And still, my mind never checked out. There were days when hope would blow into my sails and send me soaring with optimism into a bold new future. But hope was also there, in small doses, when I was falling apart and had to break the day into digestible moments. "Get through the next five minutes," hope said, "and then get through the next five until this hour is done, until this day is behind you. And then start again tomorrow."
My son’s diagnosis taught me that in spite of what I had first thought, our life was not over. My child’s future had not disappeared. It was all still there; I just needed to look in a different direction. The diagnosis taught me to parent in circles around an obstacle, something that has proven useful for raising both my children.
Sure, he’d never walk on the moon, but he might work on the science to put the next person there.
There have been some more difficult lessons to learn too, like the fact that when I needed them the most, certain people disappeared from my life. Over time, I’ve realized the ones who left made space for a better, stronger support system.
But perhaps the most important lesson my son’s diagnosis taught me is how beautiful life is. It might sound strange, but before I knew there was a clock ticking in the background somewhere, I took a lot for granted. I searched for fulfillment in all the wrong places, I allowed negative people to stay in my life, and I put my own dreams on the back burner for the sake of financial security.
Since my son's diagnosis, and now knowing the battle ahead, I've become galvanized in a way that was previously unimaginable to me. I've found physical and mental strength that I'd never tapped into before. I spring-cleaned relationships and resurrected dreams. I'm learning to truly live in the moment, because the future belongs to none of us, and my life is much better as a result.
I've learned that, even in the darkest of moments, our minds have an incredible ability to dream and to hope. My initial sorrow at how frustratingly fragile life is has transformed into a kind of awe. Yes, the kaleidoscope of our hopes and desires is fragile and delicate, and it breaks when life comes crashing down on it. But this is also what makes it so exquisite. We just need to pick it up and hold it to a glowing speck of hope, no matter how tiny, to see the beautiful network that’s rearranged itself.
Because even though tomorrow and the next day and the next are not ours to own, hope is nonlinear. And hope is the prism through which life can still look wondrous.