Cystic Fibrosis · Family · Grief · Life · Parenting

You Can

We were at the CF center this morning (regular checkup; all’s well). Because of infection control stuff, we don’t see much of other patients and families. Sometimes you see people you know in the hall and wave goofily from a safe distance. (You can occasionally determine by text that your friends are a couple of rooms down, and send hello pictures back and forth, which feels almost as if you are getting away with something and so is extra fun.)

And today, there were people in the hall that I’d seen just a few minutes before in the parking garage. Everything about them screamed new diagnosis. Both parents and a grandpa were there with a tiny new baby, they clearly didn’t know where they were going or what all the odd procedures were about, and they all looked like they were carrying 200-pound packs on their shoulders.

So basically us, seven and a half years ago.

I wanted to hug them all so hard and so long that they could barely breathe.

I really couldn’t, HIPAA being what it is, and a stranger hugging the life out of them might be a teensy bit overwhelming right now anyway. But if I could do exactly what I wanted, I would sit them down and hold all their hands at once and tell them this:


You can. I know you think you can’t. I know it feels like the sky is falling. I know you woke up this morning and thought you might possibly rather die yourself than go to the hospital and listen to some doctor you’ve never seen before tell you how this disease is going to try to kill your baby. It is dreadful. If you feel like swearing, you should go right ahead, but there really aren’t words bad enough.

I won’t lie. It’s going to be hard, and you are going to have awful days. But you will find things buried deep in yourself that you had no idea existed. Things like resilience and grit. How do I know this? Because I saw it in every line on your faces today and in the bleakness in your eyes. I saw how much you love that baby and how far you will go to fight this disease, and the answer to both of those hows is infinity. And I know it because I was where you are, and I didn’t think I could do it either.

This is my baby. He is suddenly, alarmingly tall and asks me math questions that require a calculator. He swam for an hour and a half last night without getting short of breath and is involved in brotherly fistfights on the regular. Those papers he’s holding explain that his lungs are currently in great shape. Today is a good day.

You will have good days, too, along with the awful ones.

You will love that baby fiercely and hate this disease just as much.

You aren’t alone, and you can ask for help, and you can do this.

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