Note: This post was originally published over on my Arthrogryposis Dad blog The Greene Affect.
We’ve officially made it to the 5-month mark!
We crammed a decent amount of things into the last month, including HG’s second hike and third waterfall, his first trip to the beach, fireworks, new AFOs, his first cold, watching Masters of the Universe with Daddy, and his first soccer game.
He falls asleep at the sound of waves. Loves being in the water, especially when it’s taking showers with Daddy. He has shown he is not afraid of fireworks., and seems to love musicals.
Our latest trip to Greenville for new AFOs also marked the beginnings of his hip surgery towards the end of the year.
The previous month being busy and full of things leads to the next few months being relatively calm in comparison. Up to this point, it’s been hard to get into the groove of things. No one will ever label us as being overtly scheduled-oriented, but the past few months have been more chaotic than even we would typically have it!
We’ve finally approached a point that for the next few months, we can find ourselves a routine and settle into it. Give us a chance to catch our breaths before holidays, surgeries, new casts, and more. (aka, when all routines well get thrown back out the window!)
Routine, is relative, though. We still have PT, OT, and massages weekly. We’re looking to add some additional therapies to our weekly collection. (What can we say? We’re completists). So except for a few doctor’s appointments and a swallow test, we’re in relative cruise control until October. We have time to just enjoy and soak in our baby boy. A baby boy who continues to reach new milestones on what feels like a weekly basis at this point.
As routine as things are becoming right now, as things settle into feeling normal, there are still moments where things can hit you like a freight train.
HG’s first cold and fever were stressful, to say the least. The only silver lining in that was it was during the weekend. So nights in the recliner, while not preferred, were not awful. Plus, with it being the weekend, Daddy could get in some extra cuddles! While Daddy’s cuddles can’t match Mommy’s, I like to think occasionally he’s happy and content cuddling with me.
I wish there weren’t, but there are days where HG’s arms weigh heavy on me.
When he was first born, people talked about how eventually his arms would start moving, that he would have function and use of them. Most people had a timeframe of around 4-6 months. We’re at 5 months now, and while there is undoubtedly more movement and activity in his arms and fingers, in the grand scheme of things, it’s still minimal at best. We’re approaching the teething stage and our baby boy cannot bring his hand to his mouth. It’s heartbreaking.
While most days we are excited and celebrating the small raises and movements, and the reality of things is mostly pushed from the front of my mind, there are times when reality hits me. Times, when I have pure tunnel vision of the lack of hand and arm movement. Where it looks like his shoulders are pinned to the floor as he kicks and laughs. My shoulders just slump from the weight of it all. It’s a pure punch to the gut.
Of course, that punch to the gut can be relieved rather quickly by a big gummy smile, a laugh, or some of his cooing and babbling.
And let me tell you, the boy has started to find his voice, and he enjoys the sound of it!
Despite everything he has thrown at him weekly, this baby can be the happiest (which is when we take pictures to share) and can melt your heart with his giggles. He works so hard. So much harder than a 5-month-old should have to, but he is so determined! You can see it in his eyes as he watches his hands, trying to will them to his mouth, or as he tries to figure out how to roll over from his back without his arms to help with momentum. He is already finding ways to adapt. To find HIS way of doing things. To find his routine in motion and action.
Next month makes 6 months. A big milestone for any infant, but for us, it’s the next big step in a few things. In ways, it marks the closing of this chapter and the beginning of the next.
And as I type this, with Baby Boy snoozing away in my lap, I know we’re going to soak up and enjoy this time. To take advantage of these moments. We’ve been on a roller coaster since the beginning of March, and while emotionally we’ll continue to be, we’re still in a lull before things crank back up. We got ahead of the game when we found ourselves in Greenville the first of April. Being proactive and ahead of the curve has brought us to this point. We’re going to take advantage while we can.
We may be 5 months in, with a lifetime to go, but for now, we’ve put in the time these first five months. Now we get to regroup, rest (hopefully), and prepare to close out the second half of the first year of HG the same way we’ve been going: full force (now with added routines!)