Well, it's been a few months since I've posted here. Quite frankly, things have been good and we've been focusing on other things besides Josh's CHDs. He's started middle school, had a birthday, and is obsessed with friends, baseball, videogames and Instagram. He's a pretty normal 11-year-old.
And that's the way we like it.
Thanksgiving is tomorrow, as you know. I love this time of year because things slow down a bit and I get to spend more time with my little family. Our kids are growing up so very quickly. I mean, that is so clear to me these days.
I am feeling particularly thankful right now when it comes to Josh's CHD issues as well. Not because there's now some magical cure, but because in this moment, he's fine. We go back to the doctor in about a month. It will be our first time going since he had an MRI this summer. I am hoping his numbers will be the same, but I know that's probably a bit more of a fantasy than reality. But in this moment, on this day, I am resting easy; I know he's safe.
I am also thankful because I know it could be so much worse. We recently met another CHD family. They were wonderful. The boy - 9, I believe - has been through just as much as Josh, but his daily life is a bit different. He's on meds, has a less stable immune system and his future is not so clear. I immediately felt grateful, but also guilty.
Each CHD survivor's story is different. I've met many and I know that. Maybe it's guilt because although my child's history was terrifying and dangerous, and his path forward is not safe or easy, his chances of a normal, healthy life are higher than that of other survivors.
Being the parent of a CHD survivor is difficult to explain. It's like being a member of some weird, awful club. You can just look at each other and you know. You know the pain, the worry. You know how they sat and waited. You know the helplessness.
For me, there's always this inner battle between guilt and gratitude, between fear and the promise of a better future; it's like navigating this weird sea of emotions that I can't even begin to articulate.
But before I go crazy and flash back to bad times, I try to remember that today, the sea is calm. And for that, I am truly thankful.
Be grateful and thankful for today. Happy Thanksgiving to you and yours.
About Josh's Mom
By day, Stephanie is in marketing; by night and all other times in between, she's a mom and wife, and highly passionate voice for CHD fundraising and research.