So I’m sitting here, in a dark hospital room, with nothing but a fan, ocean white noise, and the sound of my typing going on. Jenna is asleep, and I’m sitting in the glow of my laptop.
This is my prime time. Time to decompress, to relax, to write. I enjoy keeping this blog updated for people. For people (such as yourself) to read and to keep up with HG beyond what we typically post on Facebook or Instagram. To elaborate beyond what social media allows you to say, or what most people want to read in an update. However, this blog is also just for me. (Sorry, not sorry.)
Yeah, I keep up with the monthly posts and the Greenville trips, but this is my journal. My outlet. My therapy. A window into where my mind is when I’m able to find time to write. It’s not always pretty, and to be honest, I can only write when I’m in a certain frame of mind.
Tonight’s one of those nights, and my frame of mind: complete and utter relief.
I would be lying if I said I haven’t worried about this for easily the last month. The past two weeks since our last Greenville visit really doubled it down for me. Thankfully, work kept my brain busy most days during the day. I had graphic work putting ads together for a magazine to keep me busy during the evenings after HG went to sleep.
I’ve kept myself busy, but that didn’t mean during those hours sandwiched in between that I didn’t spend as much extra time with HG as I could. There may or may not have even been a 10-12 day stretch where he and I chilled out in the recliner until he was beyond passed out in my arms.
I’ve been a mess. I know Jenna has been a mess, too. My goal was to maintain the best I could, so she wouldn’t worry about me on top of everything else. (Yes, if she reads this, I’ll likely get fussed at. And if you are reading this honey: Love you!)
No, this entire experience has probably been top 5 of the most difficult and stressful things I’ve had to go through. At least 3-4 of those top 5 have to do with my children, and HG can claim two of those spots at this point.
Today was a huge hurdle, though, in a lot of ways. This was the first big step in what will hopefully be HG’s path to walking.
We’re likely looking at numerous surgeries in the coming years, so getting this one under our belt is a big deal. A lot of our concerns and worries related to HG’s conditions were calmed today. While no parent looks forward to their child going under the knife, we’ve been carrying a few extra concerns, and with the incredible staff here at Greenville, I feel I can confidently shelve those worries for now.
After everything we’ve been through these first 8-months, it’s nice to stop and take a breath. But I realize we’re just getting started.
I do my best, but I still catch myself watching monitors. Watching O2 levels and respiratory rate. Even if I fuss at Jenna for doing the same. We watched those monitors so closely at UK that it’s a habit that’s hard to get away from when presented with this situation.
Today was truly a challenge, but one I survived relatively well. I feel like I did, anyway.
I hate he has to go through all this. Has to go through all this pain. But he takes it in such stride and with a poise that no 8-month-old should have. I guess he just has enough overall stubbornness in him from both sides that his only option is to push through. That’s the one and the only choice he’s given.
Now the big hurdle of 6 weeks of diaper changes with a spica cast is in our future. I’m not sure how much poise we’re going to have with this challenge, but like everything else up to this point, we’ll make it through. (I just can’t promise there won’t be any kind of smell by the time December rolls around).
As amazing as Greenville and the Shriners’ staff have been. I’m ready to be home. I’m ready to be away from monitors, and wires, and tubes.
I don’t care how many surgeries and procedures HG ends up having, I’m never going to get over my dislike of all this hospital stuff.