Note: This post was originally published over on my Arthrogryposis Dad blog The Greene Affect.
Today makes four months for Mr. HG. I wish I could say that these monthly posts just come naturally, but I can’t. It seems like with each passing month, these get harder to write, not because there is a lack of things to cover, but because the “angle” or the focus of the post is something that isn’t as easy to pinpoint.
So much has changed in these past four months. I mean that can be said for any newborn, but with the extra layers that come with HG, and where we are compared to where we started, saying a lot has changed is truly an understatement of incalculable proportion.
I’m pretty sure I’ve started this post at least four times by this point, and each one has been different.
It’s hard, and most of the time it just doesn’t feel fair.
It doesn’t feel fair that I can’t just sit and write about how much my four-month-old son is improving. How much stronger he’s getting, how his personality is shining more and more. How he loves his music and will sit and watch Saturday cartoons with me already.
I could. All those statements are accurate, but then in the back of my head, I think about how I could or should write about the struggles we’ve had with sleeping and nailing down a new nightly ritual with the inclusions of the Dobbs bar and knee stabilizers.
I think about the excitement I get and the tears that boil up in my eyes when I see my baby boy work so hard to get a tiny twitch out of his arm as he looks at it, so determined to get that thumb to his mouth.
Yet again, all true. But if I bring up those tiny victories, I think about how I could also write about the fears and dread I have that we’ve yet to truly see substantial, sustained movement in his arms. How I’m fearful he’ll never have use of his left arm and hand. How it’s a constant struggle to wonder if we’re doing enough. If we’re going to the right doctors. If we’re missing something, or taking the wrong path.
I could absolutely write about this boy’s growth spurts. It feels like he’s had 5 in the last month. The boy won’t slow down! I mean he left the hospital under 6lbs. I expected him to always be small, yet here we are at four months, and considering he was 15.9lbs at Greenville a few weeks ago, he’s no doubt over 16lbs. Our baby boy is growing, but with growth comes small steps backward. Joints and muscles want to tighten back up. You are suddenly met with feelings of dread and fear that you’re not doing enough, or failing your son. Only to be told when you’re seen by the specialists, that it’s a normal thing for AMCers and that we’re doing great keeping up with his stretches and exercises.
The past month had us acknowledging Clubfoot and AMC Awareness days. This month is Disability Pride month. I’ve already written a small post about the support we received on our first AMC Awareness day. I’m still emotionally recovering from it. That whole thing hit me so much harder than I ever would have imagined. The swell of emotions that come from that level of support from family, friends, co-workers, even strangers, is truly indescribable.
Of course, at some point those emotions tip over and you get upset over the fact that you’re in that position to even receive that level of attention.
It has absolutely been a crammed-packed four months with our Little Prince. For the most part, the chaotic schedules have stabilized a bit and we’re able to sit on cruise control until we hit the 6-month mark. If you consider 3-4 days a week occupied with physical therapy, occupational therapy, and massages. Trips to Greenville, SC every few weeks, and the occasional telehealth appointment as cruising.
Speaking of Greenville and telehealth appointments, I can’t help but wonder if I’ll ever be able to go into one of HG’s doctor appointments without dread and expecting the worst. It’s hard. There is a constant tug, a constant pulling back and forth. Not only from both sides of a situation, but between the heart and logic. To be open-minded while rooted in facts and reality. Maintaining emotional control as best as you can by basing things on logic. The pendulum can swing both ways and does every day.
The last four months have been a rollercoaster. The next four will no doubt be as well.
Trying to write this post was a rollercoaster in and of itself. 🙂