I wanted to write something for the start of CHD Awareness Week. I thought I could really do it. But, I’m still at a loss. I haven’t written in months. Lots and lots of months. Maybe it’s because I’ve been all cried out. Wrung out. Tired out. Burnt out.
In the past, I’ve written. I’ve written a lot. It was my salvation; it was cathartic. I’ve voiced my concerns, thoughts and fears. But this time, I just don’t have it. I still don’t know what to say.
It’s taken me all these months – close to three – since Josh's surgery to find the words. And even now, it’s hard. I don’t know where to start. There’s so much I want to say, but I can’t get there. I’m still wrestling with my feelings. I still don’t have clarity. And that’s hard.
People think because Josh’s surgery is over that we’re all just fine now. Almost like it never happened. And that’s OK. I don’t want Josh to be considered fragile or broken; he’s not. Far from it.
But, just for the record, I’m not always fine. I have triggers. And they are everywhere. The immediate anger is gone, but it’s always there just below the surface. It sits dormant with the mental and emotional scars that I will have for all of my days.
People have told me I’m strong. I’m not. I’m a con artist. I’m good at faking the strength. I’m just a regular mom who happens to be in complete awe of her son. How could I not be? If there is any strength, it’s a byproduct of watching him.
I get in my own head quite a bit. Sometimes I think people don’t realize how serious and severe Josh’s surgery was because of the way he fights and how he doesn’t let this crappy hand deter him. They see the young man in front of them now. The one whose restrictions are gone. The kid who’s back in a baseball uniform and cracking dirty jokes with his friends.
It’s easy for others to forget that it was just 10 weeks ago when I got the update, “We are now on bypass.” Translation: My child was living on a machine. I mean, HOLY CRAP -- a machine was literally the only thing keeping my child alive.
They don't remember the setbacks. The internal bleeding. His physical pain. His depression. They don't know how scared we were that he was giving up. ... And then one day, he chose to fight.
These are some of the things that crawl into my head. It’s no wonder I’m still struggling.
Maybe that’s the point of this post. That I’m not fine. I’m never fine.
This is supposed to be about CHD awareness, and it is. This is just another aspect of it that most people don’t know about or talk about – the PTSD parents experience.
For us, it’s not just one week of “awareness.” It’s life. This path winds and weaves with plenty of ups and downs. The road never ends.
In time, I will get my writing mojo back. And I will advocate. I will haunt. I will strive to be the strong mom I’ve convinced everyone I am. I will be unrelenting.
And I know this to be because my motivation is the amazing young man I see every day. Time will never heal Josh’s heart, but it will -- at least temporarily -- repair my wounds.
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.