I don’t know that I’ve ever been as scared as I was today. Or as relieved, in the space of a heartbeat, a few words spoken and lives changed. Or, I suppose in this case, status quo achieved. Well, sort of. As an aside, I don’t know how people work in pediatrics, either. I hope I never have to go back to Children’s Hospital for as long as I live.
But the good news, the great news, is that R passed his sweat test. The last two weeks have been like being stuck in some sort of purgatory, torn between wanting to panic and refusing to believe that anything other than the best possible outcome was likely. I prayed, a lot. I missed my support system, a lot. The possibility that he could have CF overwhelmed me in moments when I least expected it. It felt like every other time I looked at him I welled up, and if you know me, you know I prefer almost anything to crying. I don’t do tears.
So I suppose in some sense getting to today, at least, was a relief. We were quiet, the drive in. We held hands, and didn’t talk about what was coming because I’m not sure either of us knew how to articulate the kind of fear I know we were both feeling. In the days leading up to this I hadn’t prayed for one particular outcome or the other, but merely for the strength to get through what was coming, however it revealed itself.
The sweat test itself was pretty easy. It was sitting in a room waiting for the genetic counselors that was the hardest part, and I won’t lie - when not one, but two women walked in, arms full of folders, I immediately feared the worst. My luck held out one more time, though. He’d passed the sweat test with flying colors. Rory didn’t - doesn’t - have classic CF. All those nightmare scenarios dissolved, in the blink of an eye, another wash of tears. Couldn’t help myself, the relief so palpable that the only way to let it out was in that woosh of breath, the falling of tears. Thank you, God. Hail, Mary.
We still need more testing. Kiddo’s mutation is such that the possibility exists that he is not merely a carrier, but has CRMS. If this is the worst-case scenario, we can be nothing less than elated. It feels like we dodged a bullet, and I suppose we did.
When I was talking with the rector at our church about this, someone in a position to be uniquely sympathetic to what we were going through, she reminded me that we are but caretakers for these children that pass through our lives. They don’t belong to us, but they are entrusted to our care. I read Gibran more than once, and took comfort in those words. I was reminded by a good friend that life provides us with no guarantees for any of our kids, that all we have is this moment, today.
I feel like so much has happened in the last two weeks, since that painful conversation at our pediatrician’s office. That the gray hairs I found today, the first I’ve seen, have been well-earned as I was forced to face the notion of mortality in a very real and painful way. So much of what we surround ourselves with, in our heads and hearts and daily lives, is illusion. Being forced to acknowledge that has probably made me a better parent, if only because I understand now in a way I didn’t before just how fragile the world we make for ourselves really is.
So I’m grateful tonight, and blessed. God is good, and I hope that the what I have learned, what I can no longer take for granted, stays with me as the worry subsides and life returns to something more like normal. What I do know is that we are forever changed, because of this, not just in how we look at the world but in how we interpret our future. No matter what, cystic fibrosis is now a part of our lives. One in twenty-five people carries this disease inside of them, and most don’t have the first clue. We didn’t. At least one of our sons does, and so he won’t have to worry about his own children, we will do what we can now to help work for better treatments, for an eventual cure. There is so much work to be done, and I’m ready to roll up my sleeves. For our baby boy, for his children, for all the amazing people who reached out to me after that first post who have walked this journey in much more painful ways than I have.
God is good. Faith sustains. Love sustains, the love of a partner, of family, of community, as long as we open ourselves to the possibility. The day after Easter, the promise of the day feels more real than it ever has before.
Thanks be.
