Note: This post was originally published over on my Arthrogryposis Dad blog The Greene Affect.
Today marks 3 months. (So you know I have to do my monthly post!)
We are officially a quarter of the way through year 1.
I wish I could say it has been an easy and joyous 3 months. That it’s been all smiles and happiness, just soaking in our new baby boy.
I can absolutely say there has been joy. So much joy! So many smiles and happiness. However, easy may not be a word I’d use the describe what we’ve been through, and it has included nearly as many tears as it has smiles. Physically and emotionally exhausted beyond what I thought I was capable of. It would be fair to say I’m more scattered brain than normal these days.
So after 3 months, where are we at? Where are we at, compared to where we were?
Let’s look back:
In the first 24hrs, our son already had his first fracture, his first ambulance ride, had been transferred to another hospital, and had been diagnosed with a rare condition we, along with many of the NICU staff, had never heard of.
In the days that followed, we’re essentially given a laundry list of issues our newborn baby boy has, including:
- Arthrogryposis in all his extremities
- Internally rotated shoulders
- a narrow ribcage
- dislocated hip
- infant torticollis
- and a club foot.
After the week in NICU, we filled the next three weeks with family visits and introductions, exhaustion, doctor visits, the first 2 sets of casts, the first set of splints, and lots of cuddles.
Month 2 starts off in a full sprint with our first visit to Greenville, new casts, our first wedding anniversary, and our first Easter. The next three weeks go by quickly, with weekly visits to Greenville, and massages. Our first telehealth appointment and our first surgery. We get our gamma green casts, start tummy time, and hit our first real growth spurt. All while sprinkling in a few sleepless nights, fun “blow out” diapers, and practicing our aim peeing on Daddy.
Month 3 gives us Mother’s Day, Abby’s birthday, photoshoots, and we’re finally able to fit into our Yoda onesie. We have a neurology follow-up, our first signs of pinky movement, officially start physical and occupational therapy, oh, and more telehealth calls. We graduate from casts to AFOs, get new splints, and have our first baths. Our first time in a swimming pool, shots, and our first official hike cap off the end of month 3.
So that’s where we’re at. It all looks and sounds impressive. It sounds like a lot to cram into 3 months. I sure know it feels like a lot, but at the same time, we’re just getting started with everything. This is a marathon, not a sprint (despite sometimes treating it like one) and we’re still just getting warmed up! (There’s a stretching pun here that I’m going to avoid.)
It’s not been all fun and exhaustion though. Moments of doubt. Constantly wondering and questioning if we’re doing enough. If we could do more. Scared of making the wrong decision or the wrong call. Struggling to find that balance between optimism and realism.
The vastness of the countless unknowns we have in front of us fuels the constant cloud of doubt. For every step forward, we have 2 more questions. We remain vigilant but are terrified that rather than one step forward we’re taking two back.
I do not regret any choices that we’ve made regarding HG’s treatment. His progress continues to give me hope and his smiles and coos are what fuels me more days than not. Out of the past 3 months, the only regrets I have that sit with me as I type this, are not documenting things better. We took very few photos, especially those first few weeks. I wish we would have documented his feet and his hands better. Documenting what they were then to compare to now. Sometimes just having that comparison to help remind us is the best way to get out of the fog.
I’m ashamed for not having more faith in my son those first few days. That he’d be amazing and defy expectations. Not once in these first 3 months has he fit in any one mold. He is, without debate, a unique case. He’s in his own situation. The HG situation and he makes it his own. Every doctor and specialist we meet and come across, all have high expectations for our little boy. Expectations that frankly scare me, because while I do my best to maintain optimism, I don’t want to set expectations and the bar too high.
Maybe that’s why I keep his casts on display. To not only remind me how far we’ve come but to keep things in perspective.
They’re his first trophies, and I am not going to not celebrate him and his accomplishments.