I still remember the sound of his laugh, that little giggle that made everything feel lighter, even though it was always too short. He didn't have enough breath to let it last, but it was always there—a small, bright burst of joy that could fill up a room. He was just three years old, but he had a way of making you feel like everything was okay, even when it wasn't. His tiny hands would reach out for mine, always looking for something to hold on to, and I was there, holding him just like he held me. I was his big sister, and he was my baby brother.
I was supposed to protect him, but that's not how it turned out. The thing is, I knew something was wrong, even before we were told exactly what it was. Cystic fibrosis had already woven its way into my life, had already made itself a part of me. I had CF, too. But when he was born, I never thought it would be different for him, that it would be worse for him. I thought we'd have time—time to grow up together, time for me to show him the ropes, time for us both to figure out how to live with this disease. But time, like everything else, wasn't on our side.
I remember the first few months when I watched him, a tiny baby struggling to breathe, struggling to eat, struggling to just be like other kids. I was old enough to understand that he wasn't like me—not in the way I had been. The treatments, the constant hospital visits, the endless rounds of medications—it was more for him than it ever was for me. I had lived with CF long enough to know how it felt to be in and out of hospitals, but he didn't understand it the way I did. And that broke my heart more than anything.
I did my best to protect him. I'd hold his hand when he was scared. I'd sit by his crib and sing, even when my own chest ached from the effort. But I also knew the truth, and it was something I couldn't tell him. I knew that CF was a ticking time bomb inside of him, and even though I had been fighting it all my life, even though I knew every doctor, every medication, every machine that could help keep me alive, it didn't mean I could save him.
No matter how hard I tried. I remember one night in particular—sitting by his bed in the hospital, my IVs still connected, my own breathing machine whirring softly beside him. He was hooked up to a ventilator, his chest rising and falling in uneven rhythms, struggling with every breath. I tried to comfort him, like I always did, but this time I knew it was different. I knew we weren't going to make it through this one. I knew the sound of his breathing, so shallow, so ragged, wasn't going to last much longer. I didn't know how I knew. I just did.
And then, the silence. The kind that crashes down like a heavy weight, the kind that takes all the air out of the room and leaves nothing behind. The kind of silence that stays with you, wraps around your lungs and won't let go.
He was gone.
I was supposed to be the one who understood how to live with CF, the one who could tell him everything would be okay. But I didn't know how to live with the grief of losing him. I didn't know how to breathe without him beside me. I didn't know how to face the world, knowing that my baby brother, the little boy who had fought so hard to stay here, was gone.
There's nothing in the world that can prepare you for the moment you lose someone like that. Nothing. Losing him felt like losing a part of myself. There's a scar in my chest now, right where my heart used to be, that will never heal. I can still hear his laugh sometimes, echoing in the quiet parts of my mind. I can still see his tiny face, the way his eyes would light up when I walked into the room. I can still feel the weight of him in my arms, his little fingers gripping mine. But none of that brings him back. In a way, it felt like I lost two people that day.
I lost my baby brother, but I also lost a version of myself—the version of me that was supposed to be the healthy one, the one who could show him how to survive. I was supposed to be his protector, his guide. And I failed. It's hard to explain what it's like to lose your baby brother when you have CF, too. It's different. It's not just grief—it's the realization that CF doesn't just take people from you, it rips away the future you thought you'd have. My brother was supposed to grow up beside me.
We were supposed to navigate this disease together. And now I'm here, still fighting for my own breath, but with an empty space beside me where he should be. Every day, I still carry him with me. I don't know how to let go of him, and maybe I'm not supposed to. I remember the way his tiny fingers would curl around mine, like he thought I could hold the whole world for him.
I remember how I promised I'd always take care of him, but I couldn't. And I live with that now. Grief doesn't ever really go away. It doesn't get easier. It just becomes a part of you. And sometimes, when the world feels heavy, when my own CF weighs me down and the treatments feel endless, I wonder if I'm fighting for him too—not just for myself, but for the brother I lost. For the brother who never got to grow up and live the life I'm still fighting for. Sometimes, I still catch myself reaching out, as if he's going to be there. As if he'll laugh that little laugh of his, and I can hold his hand one more time. But then I remember. And everything comes crashing back. I will never stop missing him. I will never forget him. And maybe that's the only thing I can do now—hold on to the pieces of him I still have and keep fighting. Keep breathing. Keep living. For him. For both of us.
