We have achieved the 2-month threshold!
Two months have passed in the blink of an eye, while also feeling like they’ve lasted two years. (Which to be fair is how the last year as a whole has felt, but this is on a different level).
A lot has been learned and realized in these past two months. I have gained a great deal of awareness on many fronts.
Some things are obvious. I’ve learned a ton about Arthrogryposis, a word I had never heard before that day in the delivery room 2 months ago.
I’ve learned you can’t compare. You can’t scour the internet reading, trying to compare everything to your situation. You can read, you can learn, you can build expectations, but you can’t compare. HG is his own case and his own situation. There is no other HG. Yes, we have the AMC diagnosis, and yes we’re dealing with a few other things. Those are the facts we know and all we can do is build from that foundation of facts.
Also, the facts are that we do not have it as bad as other families do. Our path and journey could have differed greatly from what we’ve had up to this point. Our son is here, our son is alive, and our son has been home with us outside the week stay at the NICU.
Our son is essentially healthy. He’s happy. He doesn’t know any different than how things are. He doesn’t know that he’s different or special. So we have ourselves a happy, healthy baby boy, that has conditions he’s unaware he has. He doesn’t know what AMC is, nor what it means.
Frankly, neither do we.
We don’t know what this time next year will look like. We don’t know what five years down the road, or 15 years will look like. All we know is the here and the now. We know what’s in front of us today. We know where we are today compared to where we were yesterday and the day before.
I’ve learned in the last two months to take every day as its own. As its own moments and milestones. To build on what was yesterday, without looking at what could be tomorrow. To not take a single day for granted. Not a single diaper change, not a single burp or laugh. Not a single smile is taken for granted.
I’ve learned to soak up every opportunity to cuddle.
I’ve learned that I need to document, document, document! Not only because of the progress we’ve made and will hopefully continue to make, but because we have a growing boy, who I swear changes daily!
I’ve learned to do my best to not walk into a situation with preconceived notions or expectations. I’ve learned the difference between hopefulness and optimism. I’ve learned the feeling of soul-crushing heartbreak and what it feels like to be powerless. I’ve learned that I need to temper expectations rather than run with pessimism.
I’ve learned that I need to be a person of awareness rather than a person who prides itself on being a realist. I’ve realized that I can let my mind get away from me and that I am unintentionally molded and driven by self-conceived fears and notions that are not there.
I’ve learned that sometimes you have to find a way to shoulder things, not because you have to, or because there’s no one else, but simply because you stand in a position that you can. I have watched my wife struggle at times because it’s unfair. It’s unfair to her and unfair to him. I carry that guilt with me. It doesn’t so much drive me as it motivates me.
I’ve learned that sometimes, to help someone you love, be firm and direct rather than soft and comforting. Be logical and accept the things in front of you. Nothing more, nothing less, because that is what you’re left with. That’s what you have. Anything beyond what is in front of you is circumstantial, assumption, or a presumed fact that you don’t know the accuracy of.
I’ve learned to love my wife in more complete and different ways. I’ve learned to restrain from wanting to choke my wife when she’s being ridiculous (joking!) (not joking!)
Most importantly, I’ve learned that as cliché as it is, that life is fleeting and you don’t know what tomorrow will or will not bring. And that’s a daily struggle to remember.
So what have I learned in the last two months? I have learned how to live in a way that I should’ve been living for a long time and I’ve learned that I need to make an effort to maintain it that way from now on.