If bringing a new baby home is parenting basecamp, a swirling chaotic celebration, the first flashes of a million photos, instant inclusion in a village of enthusiastic peers, then launching them into the world as fledgling adults is the mythical mountaintop. They’ll be grown by the time you get there; you’ll be ready to say goodbye. Unimaginable at first, but the mountain whispers, “Climb” and, enchanted, you do. One day the peaks, no longer obscured, are precariously underfoot. The sun is blazing and that infant, now grown, all wings and restlessness, is hovering, ready. It’s breathtaking, this place. It’s not just the altitude that hurts.
Shouldn’t it be easier, letting them go? You’ve had so much practice saying goodbye. What’s weaning but affirmation of independence? Walking, school, summer camp, sports. As teenagers they’re sprinting ahead, reaching markers on their own, casually shouting updates back, gathering talents and skills like they were born to it. A thousand milestones before they’re grown, a thousand ways to say goodbye before they’re flown.
And a hundred times, a thousand times, more fraught for the parents of medically complex kids.
Your experience up the mountain was not the same. Every milestone reached was made more precious for the worry and work that went into it, the product multiplied in your heart, proof repeated with every beat of theirs. You’re exuberant, celebrating every elevation you feared might never be gained, but it’s a paradox. The farther from the safety of the known they roam, the more you need to prepare the way so they can go without being singled out, left behind, or hurt.
You already know the world is not kind enough. The pandemic made clear that for too many people inconvenience is not worth the hassle to protect themselves, let alone strangers. How can you trust the world to keep your kid safe?
You can’t.
You have to count on your ability to teach independence, and your child’s ability to learn it. One of my kids was fearless around water, supremely confident that they could swim like their older siblings. They couldn’t. At all. They celebrated sinking joyfully, over and over, as if it were a talent, a kind of wonderful underwater event. As many times as we pulled them out, soaked and choking, they ran right back in. Swimming lessons and mandatory life jackets were strictly enforced until they could follow water’s laws safely.
The difficulty with rare and chronic illnesses is that there may never be a time when your child’s knowledge of the rules of their condition is enough to ensure their safety. When their life depends not just on what they can control but on others’ understanding and the world’s willingness to change, their growing independence feels more complicated.
You get used to it. They do too. You follow less traveled paths, but you’re headed the same direction. The climb is harder and you may not have a map, but your kiddo is resilient, you’re strong, and doing whatever it takes is the only option anyway. You carve out a bubble as safe as possible until they can carve their own. They’re scrambling onwards, hinting at where they’ll go in the world, how they’ll fly.
You’re getting there.
The closer they get to launching, the more they’re off running trails on their own, meeting friends, going places without you and your big bag of backup supplies. It’s good. They’re confident that the world is an exciting and welcome place. You’ve put the labor into making it so, because you didn’t want their lives diminished to the size of a diagnostic code, allergen, or prescription. Except sometimes, in carelessness or the desire to fit in, they leave their medicine at home or eat something they shouldn’t. You scold. And worry. They may have as many skills of independence as the next teen, but your kid needs more than that to survive.
It’s difficult for any parent, that after a lifetime of Mama-Bearing or Tiger-Parenting, helicoptering, free-ranging, or snow-plowing, after all those years of carrying, cajoling, and chasing their way up the mountain, you’re just supposed to launch them into the world at the exact moment they’re most reckless and least likely to follow instructions. Of all the tasks that parenting requires, the hardest one is letting go. Everyone knows the joke, that they’ll learn the hard way just like we did. But for special needs parents, the joke is cruel; developmentally they’re expected to challenge what we say, but their life may depend on accepting it.
You want more time to make sure.
They’re ready whether you are or not – flexing their wings, testing the wind, looking beyond your fears. You’re rechecking the safety straps, smoothing feathers, praying they fly true, that they follow your advice. You’re fretting over all you haven’t taught them. You think of Daedalus fastening wings to Icarus atop some ancient Mediterranean peak, under this same brilliant sun. He knew wax and feathers wouldn’t be enough to keep his child safe should he fly directly into danger, distracted by the view, overwhelmed by the delicious freedom of the wind. Soaring out of his father’s reach, he’d feel invincible, unbound by human rules. Did Daedalus silently pray for safety while announcing the sure and beautiful flight ahead? Maybe he wondered if he should go first to make the sun move aside, or thought, too late, as Icarus dove off the precipice, that he should have given his son one more swimming lesson, just in case. If he, the inventor of flight, underestimated the danger to his child so tragically, what rare courage will you need to let yours try anyway?
The mountain, once enchanting, is stoic, silent. The wind is teasing, wild. The sun has seen it all and isn’t shy – “You’ve collected courage by the thousands and now you’ll watch them fly.”
In addition to writing, Yalisha Case knows how to make a seven course meal using only cassava, can pack five kids and all their gear in the van without crying once, and enjoys picking glitter out of cracks in the floorboards in her spare time.
photos also by Yalisha Case.