Note: I originally published this post over on my Arthrogryposis Dad blog The Greene Affect.
On March 4, we sat in a hospital room in Lexington, our newborn son down in the NICU with countless monitors and tubes. The day’s events had left us speechless. We were scared and had no clue what our future looked like or would hold.
Eight months later, we find ourselves sitting in a hotel room in Greenville, SC. A day removed from being in a different hospital room with our son hooked up to different monitors and tubes. Two days removed from surgery, our son sits in his new wagon, laying on a bed of pillows, with a cast from just above his right hip down to his toes, around his waist, and halfway down his left thigh.
Yeah, we may have had no idea what the future held eight months ago, but I’d never had guessed we’d be here.
This first year, while labeled as the hardest among AMC parents, has also flown by. (Maybe I’ve just stayed in such an emotional haze, it just felt like it.) It’s crazy for me to believe our son is 8-months old. I make sure to write this monthly post, if for no other reason than to keep up with everything!
Since his 7-month post, we’ve made two trips down here to Greenville. We’ve had RSV shots, tried a ton of new foods. We’ve gone to more soccer games, had a belated birthday party for Canaan, taken tons of baths and showers, and continued to master trolling Mommy when she tries to take photos. Had our first Halloween, went on a hike.
We finally had family photos taken!!
Oh, and learned how to roll over! (and over, and over, and over!)
When HG turned 6-months old, I said that was the ending of the first chapter and the beginning of the next. With this hip surgery, I think it’s fair to say we’re closing another chapter and beginning another.
We’re 8-months into being AMC parents. There have been ups and there have been downs. There has been a constant learning and relearning. Moments of immense stress and moments of extreme happiness, love, and excitement.
That reads a lot like the first 8-months of any baby. I wish I could say it’s the same, but it’s not.
Adjusting growth percentile calculations. Readjusting milestones. Everything is parenting on a curve that is constantly moving. It’s hard to not worry and to not get frustrated.
To learn new terms like arthrogryposis, myopathy, spica cast, and more. To relearn things such as not seeing disability as a bad word and replacing the word “normal” with the word “typical” when describing others.
People will tell us we’ve been courageous or strong during all this. (Sometimes only saying Jenna has been courageous and strong, which I don’t know what that says about me. ) It’s never felt like that. I’ve never felt strong. I’ve never felt courageous. There have been plenty of times I’ve felt the opposite, but the vast percentage of the time, I’m just doing all I can as a father for my son. We’re parents who will move mountains if it means our son can live a happy, healthy life.
Through all this. Through the tears and the pain. The worry and stress. Through the unbearable weight on our chest from some fear of the known or unknown, we’ve never lost sight of the fact we’re very fortunate and blessed. We never take for granted that while we might not be on the path that we had envisioned prior to 35 weeks ago, we’re still on a path countless would give anything to be on.
This path we’re on has given us countless doctor visits, therapy visits, and miles driven, and this path will continue to do so.
For one of the few times since we’ve been on this path, we at least know what the foreseeable future holds. HG will be in his spica cast for 6 weeks, all the way to December 14th. After that, we will hopefully move onto another heel release and casts for 3 weeks after that. So, this holiday season will not only be our first year with our little guy but our first year of casts throughout the holidays. (Highly likely this will not be our last). Once we enter 2022 and are out of casts for a moment, things will get interesting!
For now, though, for this next month, we’ll concentrate on our baby boy’s healing. Hope and pray for no major issues. (including diaper blowouts!) Enjoy extra time in the recliner, and continue to work on eating and being happy.