I am a writer at heart. When I’m angry, I write to exorcise that heat, to find a path to equilibrium. When I’m joyful, I write to celebrate, to commemorate. I write my way through most every major life event, because it’s one of the few ways I know to process what I’m going through, to put it someplace in black and white that is separate from the inside of my head. For better or worse, it’s how I get through things.
I write.
So I am writing this, even though I don’t really want to, because writing somehow makes it real. On March 6th we were blessed with son number 3, our baby, our ginger Red King. 7 lbs 1 oz and 19 inches of beautiful, sweet, peaceful boy and he has fit into our lives as if he was always there. Even S, the now-middle child, has accepted his entry into our lives with an ease that surprised both the husband and myself.
He’s nursing well, he’s starting to be awake more, he’s a joy, and I have enjoyed every minute of our leave together. Tuesday we had our two-week checkup. He gained a pound since hospital discharge, a whole two inches, which, honestly, I expect has more to do with hasty recording at the hospital than a major growth spurt but we’ll take it.
Before the checkup, the nurse practitioner sat down across from me and gently said that the state newborn screening folks had contacted the office. R had popped a flag for cystic fibrosis.
She was smart enough to wait to continue a few moments. I’m sure it was the look of abject terror on the face, maybe it was the fact that all I could hear was the blood rushing past my ears. It took me a minute to realize what she was telling me wasn’t a diagnosis, and then, under the weight of both possibility and relief, I started to cry.
On the day of his birth, R’s bloodwork put him in the top 10% of those born that day at risk for the disease. A second test was run, which ran his profile against the most common mutations that cause cystic fibrosis. Two mutations would indicate a positive diagnosis; R has one. Because they only test for the most common mutations, there is still a possibility - 10% to be precise - that he has the disease.
The NP was very reassuring. He’s growing, he’s healthy, he’s thriving, his lungs are clear, all good signs in our favor. As far as we know, there’s no family history on either side, certainly no one we know who’s had the disease, which is also a good thing. Odds are certainly in our favor that he’s merely a carrier, not a child that is going to be sick. But I didn’t hear any of that on Tuesday. I barely heard her caution me not to go home and try to research this on the Internet, though it turned out to be the best advice we would get.
So April 9 we will go to Children’s Hospital for definitive testing, to find out one way or the other. In Minnesota, they don’t do the “sweat test” - which is the gold standard for a diagnosis - until a child is at least a month old. We have to wait what feels like an interminable amount of time to sit in a room and find out if we have a fight on our hands or if we merely have to prepare our child to be vigilant once the time comes forhim to have children.
I cried a lot on Tuesday. Less yesterday. Only occasionally weepy moments today. I haven’t wanted to let him out of my arms since that appointment. A good friend of mine reminded me that no matter what the outcome we have no idea how much time we have, any of us. I am trying not to fixate, to play out worst-case scenarios in my head, and I have mostly been successful. I am praying, with every breath. For strength, for him, for us. I know better than to pray for a particular outcome because I don’t believe prayer works in that way but I pray that no matter what we hear on April 9 that we can get through it. That I am - can be - the mother he needs, that he will need, today and tomorrow and every day after that, forever.
We’re strong, our family. We’ve been through a lot over the past year, and R’s been throwing us curveballs since practically the moment of conception. This is just another one. We’ll roll with it, and we’ll be okay. We will. If I write that, I make it real.
