Tightrope.

“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

 

Behind the Scenes

Everyday people across the world aimlessly pick up their phones and click on Facebook, Instagram, Twitter, or one of the many other social networks. There may be something they want to read in particular or they may just be bored, scrolling down their timeline. Every once in a while they’ll see something interesting or funny and tag their closest friends or family so they can share it with them.

I’ve thought a lot lately about posts that people share, painting a picture of their lives but really only skim the surface. They’ll write about the big things they want people to know but don’t give much detail on the process of getting there. This isn’t intentional, but people as a whole tend to care only about the main points and less about the details. This isn’t always a bad thing, people just get caught up in the moment and everyone is always on the go. We have busy lives and we want to get to the point, so even when we share our own stories, we minimize to get the point across.

I’ve realized that we have been doing that a lot with Griffin’s medical condition. People ask; “How’s Griffin?”, “When do you think you’ll get to bring him home?”, “How are the older kids handling this?”, “How are you and Jarryl?”. And we minimize, every single time. The same responses to different questions, “he’s getting better, slowly but surely”, “we’re okay, hanging in there”, “the kids are ready for us to be home but they’re okay”, “I’m not sure when we can come home, but hopefully soon”. And we leave it at that, and people take it and move on.

But the truth is, behind the scenes, things are a lot harder than we let on. We don’t talk about the anxiety we felt the day he had his 15 hour open heart surgery. Or the feeling of seeing him straight out of surgery and how his skin was almost purple and he was so swollen it looked like his face had been beaten with a baseball bat. I don’t talk about seeing his chest open for the first time (they couldn’t close his chest after surgery because there was too much swelling) and how it knocked me back for a second, seeing his tiny little heart and lungs in his chest, just beating away. Or how I got used to seeing it open, like it was normal, until ten day’s later when they finally closed it.

I don’t mention the multiple scars all over his body from being poked and prodded with needles. Or how we have to be the ones holding him down to be poked and prodded with those needles. We don’t talk about how we will literally sit and stare at the monitor all day to make sure his stats are where they need to be. I can’t even count on both hands how many times a nurse has told us to stop staring at the monitor because it will make us crazy, and they’re right. Because thinking about going home without a monitor to show us how he is doing fills me with so much anxiety it overwhelms me.

Mostly we don’t talk about how we’re feeling. I don’t talk about about how I cry in the shower every other day because I’m overwhelmed and it makes me feel better to let it out privately. Or how Jarryl will shut down and not talk to anyone until he can sort things out in his head on his own. We don’t tell people how the kids call us and cry because they miss us so much and how it tears us apart. Or how they’ll put us on Facetime and just sit the phone down next to them while they watch T.V. to make it seem like we’re sitting there beside them, talking to us about the show intermittently just like if we were home. Dreaming about us actually being there to hold them, laugh with them, play with them, and just be there with them.

The thing is, we’re not the only family that goes through things like this. Whether its another medical family far from home, a military deployment, or a job that takes you far away. People everyday across the world are dealing with huge issues but only share the moments they deem appropriate or enough to share. So the next time you ask someone how they’re doing, while dealing with something big, know that they’re only skimming the surface and be OK with that because maybe that’s all they can handle talking about. But know when they ask you to pray, send positive vibes, or send love, do it because that’s when they need it the most. That’s when they’re at their most vulnerable and they need all of the support they can get. It always takes a village.

“My dark days made me strong. Or maybe I already was strong, and they made me prove it” – Emery Lord