“Patience is a virtue”…the thought runs through my head as I quickly run through everything happening in life. Having a child in the hospital, having kids at home waiting on us to return, having a fiance being spread as thin as a piece of paper to keep bills paid and still see all of his kids, including the one in California. Meaning constantly going back and forth. He gets to be in California and be with Griffin and I, and then he’s back in Ohio to be with the other kids and to work. I don’t give him enough credit, no matter how many times I tell him how proud I am of him, it just doesn’t suffice. It’s more than just being away from the kids, he deals with the little things that pile up, that I would normally be there to take care of with him. And to top it off he has court for custody stuff that should be over (because we were awarded full-custody for good reason back in July). Unfortunately, some people are just so full of hate and jealousy that trying to remove their negativity is like trying to pry out a splinter that has been lodged for far too long, festering under the skin. He’s been working on that metaphorical splinter for what seems like decades but it’s a slow, painful process. So the result of our current “waiting period” is all the same, extraordinary amounts of stress. Stress from Griffin, stress from court, stress from the kids being upset about us gone, stress from normal life things such as bills, etc. It’s all a mess.
So back to “patience is a virtue”. How can one feel as though they’re able to be patient with what feels like the entire world on their shoulders? Tell me, please. Because if anyone has some superior enlightenment on how to be tension-free with everything that’s going on, I’d love to hear it. The problem is, if you’re not in my shoes, and you try to give me advice on our situation, the value of the advice is masked with ignorance. Not for lack of trying to understand what we’re going through as a family but just not being involved. No one is as deep in these trenches as Jarryl and I. It’s our son, ours and the kids lives that have been turned upside down. The best anyone can do is offer kind words soaked in positivity. It might sound as though I don’t want that, it’s just that it’s all I’ve been hearing for months and it gets to the point that it’s like a broken record. I know I’m strong, I know Griffin’s strong, I know Jarryl’s strong, I know the kids are strong, it just doesn’t mean that we should have to be. We should be at home, cuddled under blankets on the couch because it’s snowing and the house is chilly. Holding Griffin while listening to the kids argue over someone laying too close to the other one, or deciding what movie to watch next.
The point is, virtues suck. I don’t want to be patient. I want to have a plan. I want to know the next steps instead of being stuck in this unending game of unknown resolutions. But it’s not that easy, there are a ton of variables to consider before deciding on our next steps in this medical journey. The pacemaker hasn’t been placed back in yet, we’re still operating on temporary wires. Temporary wires, wires that are connected to his heart but advance through his abdomen and exit through his belly to connect to an external pacemaker. The wires are secured with only stitches and tape. Stitches and tape are keeping my child alive. Let that sink in.
Do we place a bigger shunt when the new pacemaker goes in? Do we wait and just place the pacemaker and do nothing else? Do we wait two more weeks or four more weeks? Do we continue to make progress on the vent or ease up a bit? Do we want to ween more sedation before the next surgery or leave it alone so he doesn’t withdrawal so bad? We’re literally walking a tightrope. One bad decision can have us falling off and plummeting to the unknown. The questions and fear are endless, and this will never end. CHD is not curable, Griffin will never be “fixed”. A full repair does not mean he will not be back. There will be surgeries his entire life, for every child with this loathed disease.
And I might just be feeling extra irritable about the waiting game because yesterday was a milestone birthday. Yesterday I turned 30. And yesterday I didn’t have my family with me. I did, however, have my best friend. Flying 2,456 miles to make sure I didn’t spend my birthday alone. It’s an undeniable act of loyalty and friendship and I couldn’t love her more for it. She tried her best at keeping me happy and she succeeded, until I decided it was a good idea to get a couple drinks and cried at the bar once I started thinking about Jarryl and the kids. Ugly cried, I never cry when I drink, ever. Props to her again for helping me come out of it.
At the end of the day I just want Griffin to be as healthy as possible so we can make the journey back to Ohio. I’m just sucking at the waiting part.
Patience is the calm acceptance that things can happen in a different order than the one you have in mind. – David G. Allen