Tick Tock ... Living in Limbo
Josh just celebrated his 10th birthday -- a huge milestone for us because, frankly, we didn't know 10 years ago if this day would have come. But, thankfully, it did.
After Josh's last surgery at 4 and continuous visits to his cardiologist, we were always reminded of the same thing, "Let's get him to 10, maybe 11, and then it will be time."
Well, ladies and gentlemen, the "time" is now. This is by far the longest we've ever gone between surgeries. Of course, I'm thankful for that. However, I now feel like we are living in limbo. Realistically, surgery is happening in the next 12-18 months. And even after all of these years, I still don't know how to handle it.
I find myself being more sensitive, more mama bear lately. Every time I think about planning for the next year, I think to myself, "when is it happening?" It's enough to make you go insane.
It's like playing a constant waiting game. You don't want to go too soon because you don't ever want to go. Who would?
On the other hand, if it's inevitable, part of me just wants to get it over with, so I know he'll be OK and the disruption to his normal day-to-day will come and go.
But, then again, "getting it over with" meaning signing a piece of paper that says, "yes, I realize there's a 5% chance my son could die" and I have to be OK with that.
It means my son being put on a bypass machine and relying on that machine to keep him living. It means having another human being's hands in his body, holding his heart -- and his life -- in his hands. It means hoping that nothing goes wrong; that he's not part of that 5% that the paperwork I just signed talks about. It is hours of sitting, waiting, crying and worrying.
It is awful. And it breaks my heart to even type those words, but they are what they are.
And afterward, it also means extreme pain for him. And the ICU. And once again, going back to that time when it was hard to see past the tubes and wires. Maybe a ventilator. Definitely a chest tube.
This holding pattern is not easy. I don't think about it every day, but it does frequently just sort of pop in there.
I apologize if this blog seems to ramble on, but this is the way my brain seems to be functioning lately when it comes to this topic. All I hear is "tick tock."
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.