Some things will always be completely out of our hands. It is a bitter truth, one of the most helpless and hollowing feelings a parent can endure. Standing before your child’s pain, knowing that no amount of love, effort, or willpower can make it stop, is a kind of anguish no one can truly prepare for. The helplessness of being unable to fix what’s broken, of being unable to trade places, of knowing that no matter how deeply you wish it, you cannot wrap your arms around the illness and pull it from their body—it is a grief that cuts deeper than words can convey.
In a world that so often praises control, being the parent of a medically complex child teaches you a hard truth: control is an illusion. In the beginning, you might fight it. You arm yourself with knowledge, becoming fluent in medical jargon, memorizing medication schedules, learning how to advocate for your child’s needs until your voice shakes with exhaustion. You do everything you can to take charge, to ensure their survival, to protect them. But no matter how much you prepare, how hard you fight, there are moments when none of it is enough. The machines hum, the monitors flash, and you are left holding your breath, caught in a silent negotiation with the universe, hoping for just one more stable moment.
And yet, despite all of this, we try, don’t we? We try to hang the stars ourselves, to string light through the darkness and call it hope. We research, we plan, we pray. We reach for anything that will make the unknown more bearable, something to give us control, to ground us when everything feels like it’s slipping away. The unknown, after all, is unbearable—it looms over every decision, every moment spent in the hospital or at home, waiting, hoping, and wondering what will come next. And it is this constant battle against the unknown that teaches us the most difficult lesson of all.
In those moments, when the weight of uncertainty presses down on us, we are asked to dwell in a space where control is no longer possible. It’s a place where we must learn not to fight the truth of what is. We must learn to live, to love, and even to find peace—not because everything is okay, but because we have learned to accept what cannot be changed. Peace doesn’t mean the absence of fear, nor does it mean everything has turned out how we had hoped. It is a quiet peace, the kind that comes with the understanding that not all battles are ours to win.
This kind of peace coexists with fear. It holds space for grief and gratitude in the same trembling breath. It is not a loud, triumphant peace, but a soft one—one that whispers through hospital corridors, in the quiet of the night when you sit by your child’s bedside, watching their chest rise and fall, praying that each breath is one they will take again tomorrow. It is a peace that reminds you, even in the storm, even when we cannot silence the thunder, love remains.
And maybe, in the end, this is what we are meant to discover. That when everything else slips out of reach—when we can no longer hold on to the illusion of control—love is still something we can hold. It is a constant, steady force that remains with us, even when nothing else feels certain. Love is what carries us through the moments of fear, the long nights of worry, and the days when hope feels far away. It is what holds us up when the weight of our child’s pain threatens to crush us. It is what keeps us going when the road ahead seems long and untraveled.
Love does not promise a cure or a happy ending. It does not guarantee that everything will turn out the way we want. But love gives us the strength to keep fighting, to keep holding on, even when we feel like we have nothing left. Love is the one thing that no amount of medical jargon or knowledge can take away. It is the one thing that remains when all else seems lost.
So, we live with the truth that we cannot fix everything, that some things are beyond our control. But we also live with the knowledge that love is something we can give and hold, even in the most difficult of times. And in this love, there is a quiet kind of strength—one that carries us through the darkest hours, one that whispers, “You are not alone.”