Hello there. It's Mother's Day today, and since about 4 PM, my anxiety has been at Def-con 12.
It hit me a short time ago that Josh heads back to the cardiologist in about 36 hours. And it's making me crazy.
From the outside looking in, you'd never know I was feeling this way. I keep it deeply hidden -- especially from Josh.
We do this song and dance every six months. They initially told us he'd be lucky to get to 10 years old before his next surgery; he'll be 12 this fall.
So, it feels like we are perpetually floating in purgatory. And to be completely honest, I'm tired. I'm tired of the not knowing when his number's going to be called. I'm tired of worrying that within a short time frame he could be back on the operating table. I'm at my breaking point. I want to scream. I want to pull my hair out. It's making me itch in my own skin.
It makes me crazy to think that no matter how much I want to protect him from this, I can't. Regardless of the "when," it's going to happen, and we can't make sure he's OK. We can't be his protectors. We have no control. We are helpless.
Can you imagine that? As a parent, being so completely and utterly powerless?
As parents, it's in our DNA to think of our kids first. To shield them from the dangers of life.
And I can't.
Maybe that's where my anxiety comes from. To know that others will decide when it's time for Josh to go into the cold operating room -- alone -- with his heart and life literally in their hands. I get sick just thinking about it.
I'm at the point where I sometimes just want to get it over with so he can live his life for awhile without having to worry. Because it will happen. And I can't stop it. I can't protect him.
The best we can do is find the best doctors we can and hand our trust and his body over to them. And while I know logically that it's the only power we do have, it does not make me rest easy. It does not take away the fear.
I thought that as life went on, I'd gain perspective or be better equipped to handle this. I know the drill. I know what's to come. But I'm beginning to think that instead of that making it easier, it's having the opposite effect.
I do know what's to come. Assuming his surgery is successful, I know what it will be like in the ICU. I know how frightened he'll be and how much he'll cry when he finally does wake up. I know the pain he'll be in and how he'll cry out for me in the middle of the night because his body is screaming. How he'll be hooked up to 50 different machines that all have their own horrible sounds and flashing lights. And I hate how I know what they are and what they mean.
I have so many different emotions. My anxiety is getting the best of me, because every six months, we think "it's time." And eventually, it will be. And I continue to be helpless.
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.