Note: I originally published this post over on my Arthrogryposis Dad blog The Greene Affect.
Today marks seven months!
I swear the deeper we get into this first year, the less real it feels. How is my baby boy seven months old already?! How has it already been seven months? It feels like just last week we were walking down that endless hall at UK Hospital to go see our newborn baby. It’s crazy!
As we enter October, it feels weird to say we’ve not been to Greenville since back in July. Filling up the last few months with multiple therapies, soccer games, and massages hasn’t really given us a break, but it’s been a nice lull (if you can call it a lull) in the chaoticness that is HG.
Honestly, September has felt like the first full month where I’ve just been able to enjoy HG. Having time to just play on the floor or cuddle on the couch. Not having to organize the week in anticipation of a weekly trip to South Carolina has been nice and spoiled us a bit.
Sure, there are still down days. Moments where the weight of things gets to me. The rollercoaster of emotions that comes with his arms and hands. He continues to show progress, albeit small, tiny factions of progress. We’re still moving in the right direction. The concentration he gets in his eyes as he watches his hands is both inspirational and heartbreaking for me. You can see the intensity in his eyes as he tries to get his hands to do what he wants them to do. I just wish I could help him. To find that magic switch that grants him that ability. I do my best to keep myself grounded with HG’s progress, but when he shows signs of forwarding progress, I swell up with emotion over it. The progress is tiny, but we’re making progress, and I know my guy will get there on his own time.
That’s another thing that’s proving to be a needed self-reminder; HG is on his own timetable.
I can’t remember when exactly, but there was one day that Jenna was giving me the updates from the daily therapy sessions and she said one therapist made a comment, that I keep stamping into my brain: Harrison is on his own timetable, and he will reach milestones in the timeline that he is meant to.
It’s spot on and is a stone-cold fact for us. There is no timetable or chart we can refer to for HG. There’s no way we can check to ensure our son is progressing at the speed at which he should be. We’re flying blind, letting our seven-month-old lead us through the dark.
That’s far from the easiest thing to do. Yes, just like everything, some days are easier than others, but younger cousins that are passing him by surround HG, be it in developmental milestones or simply with weight and height. While we have nearly daily reminders of how well our boy is doing, there’s always the other side of the coin, which is essentially a reminder of where he could be if not for his condition.
So you have excitement and joy in one hand, sadness, and heartache in the other. For anyone that is familiar with or remembers The Racer rollercoaster at Kings Island, that’s the emotional rollercoaster we stay on. Not only do we have the ups and downs, but we tend to be going in two different directions at once.
That we’re essentially in a “holding pattern” on a lot of his development until his hip surgery also proves to be a frustrating fact. HG has reached a point where most of the therapists feel like we’ve reached a threshold that we shouldn’t try to surpass until after his hip surgery and everything is “lined up” how it should be. The hopes are that this will help him with balance, sitting, and a few other skills. Yes, it’s hopeful and positive that so many people feel like we’ll have these milestones and skills in the months following surgery, but the waiting time between now and then is tough when you want it to be now.
So with that, a lot of focus is being put on working his hands and arms and encouraging movement and activity. We look for any and every way to encourage and entice him to move, so we do not shy away from toys or other items. You can only buy so many toys, however, and that mentality leads us to HG’s new kitten Neeko.
So yes, in the last month we’ve added a new member to the household, and while she’s still young, she’s taken to HG quickly and he for sure loves his kitty! It’s impossible for him to not smile or laugh anytime his hands touch her fur. So the new feel of her fur and stimuli for his hands and fingers have proven to be a hit. That’s something else we are always trying to be mindful of. New stimuli for our little guy. The more we give him, the better chances for improvement down the line. No stone is left unturned.
These last few months have been a nice reprieve. Despite all the things we have on a weekly basis, we’ve still been able to catch our breaths, be it ever so slightly. I’ve been soaking up the time we’ve been able to spend with HG doing typical things like going to his brother’s soccer games, taking baths and playing in the water, trying rice and oatmeal, watching football, and laughing at Daddy while he sits in his highchair.
All in all, it’s been a bit spoiling considering all this is really the calm before the upcoming storm. We’re a month away from his first procedure for his hip, and the closer we get to it, the more nervous I get. Even through all the chaos of daily life, there’s been a sense of calm the last little bit since we found a routine. It’s going to be hard breaking from that, learning new habits and routines with the new casting he will have. We visit Greenville again in a few weeks, then it’s all hands on deck for the first of November.
Until then though, I’m going to soak up this calm as much as I can. It’s been a whirlwind these last seven months, and while we’ve been in a more calming pattern, we’re about to ramp things back up for the back half of the First Year of Greene.