Note: I originally published this post over on my Arthrogryposis Dad blog The Greene Affect.
I wrote a letter to my son when he turned a month old. Since then I’ve posted a monthly update. Today he turns six months old, and I decided to write him another letter on his 1/2 birthday.
Happy six months, son!
And with that said, that’s all I have come up with to write to you prior to sitting down.
It’s crazy to think about, and hard to believe that six months have already passed since that week we spent in the NICU. It’s even harder to process all the things that have changed and all that we’ve crammed into that amount of time.
So you’d think I’d have all sorts to talk about. That I’d be able to write you out this whole retrospective letter and be insightful and deep. The truth is; I’ve started this thing twice, just today! You’ve been officially 6-months for over 8 hours and I’ve still struggled to get this written out for you. I’ve known I was going to write you a letter at 6-months for a few months now. I’ve been trying to get my thoughts down for the past few days, yet for some reason I’ve struggled. This isn’t like a letter you’re reading today. The reality is you may never read this.
So why are the words so hard?
Sometimes the words for all of this are just hard, and this seems to be one of those times.
Is it because, while you may never read it, others will, and I want to only write about the positives and not be referencing a lot of the negatives? Maybe.
Is it because, after six months of keeping things relatively stable that I’m scared once I start typing the floodgates may open? Perhaps.
The words are hard for me, because I’ve considered six months a pretty substantial milestone, and it’s easy for me to be emotional over it all.
Six months ago, I stood over you in a NICU bed, scared beyond words. Overwhelmed by the countless unknowns going through my brain, I wasn’t able to look past the next day, much less six months down the road. Even if I had been able to that day. If I had known what to expect and been more level-headed and prepared, I still would have never imagined you’d be where you are today.
Son, you amaze me.
While I may struggle with some of your struggles, and I find myself heartbroken for you, you keep me in awe.
When you were in that crib, legs and hands clinched and contracted, hooked up to countless anxiety-inducing monitors and tubes, I questioned then if you’d ever even be able to sit in a chair normally. Six months down the road, and you’re sitting in your highchair, learning to eat from a spoon, and cooing to your mom how good you are.
You’re a six-month-old who has so many therapies going on during the week. I don’t know how your mom keeps it all straight. Speaking of your mom, dude, she’s awesome! I’m not sure you or I either one would be where we are if it wasn’t for her. She is a determined one when it comes to you, that’s for sure! Since you were born, the only time you have had where you weren’t being seen by a doctor, occupational or physical therapist was the week we went to the beach. Beyond that, your weeks have been booked up, and your mom has been there for every single thing.
I have to say, son, you may be one of the few people who rival your mom in determination though. You can show more determination in your freshly 6-month minted face and eyes than most adults could ever hope to have in them. You watching your hands, trying to will them into function is heartbreaking, because I want them to spring to life so badly for you. Yet, your determination in such a simple act so many take for granted is so uplifting and inspirational (once I get past the emotional, wanting everything to be ok Dad mode), because you can see, you’re so determined that at some point, it will happen.
Never, ever lose that determination, son! Not only because you will always need it, but because that’s part of what makes you, you.
You are so strong, so determined, and you do so much of it with a smile. (Albeit an ornery smile when you know you’ve cried or faked slept your way out of something) While we’re on the subject of that orneriness; you for sure get your stubborn/orneriness from your mother and it drives me insane sometimes, but never let go of that! Just like your determination, you’re going to need it. You’re going to face people, tasks, and situations that are going to require that stubbornness, that tenacity, to get through it. There are even going to be times where you’re going to have to be stubborn with yourself to ensure your determination doesn’t waver. I’ve already witnessed your mom do this dance a few times, so I know you have it in you.
At six months, you’ve already learned to not smile at mommy when she has a camera pointing at you, but to grin it up when she’s not. You’ve figured out your mother’s tricks to stall or keep me at home rather than go to the gym. Figuring out how to flash a smile when needed, or to clack your AFOs when you want to be annoying, seem to be fairly new tricks you’ve picked up to help pester your mom, so I appreciate the balance between myself and your mother. You for sure have mine and your mother’s numbers, but beyond that, you’re getting things done.
You’re already finding your ways, and that’s something you’ll always have; your ways of doing things. Whether it’s using a cushion to work your hand up to your mouth, kicking your legs to maneuver out of a chair, or using your head to move things out of your way, you’re already learning ways to get what you want to be accomplished.
You’re a six-month-old, with arthrogryposis. While different and unique to some, you’re now our normal. This is our normal. It’s not always easy, but whose life is? Your path is just one that isn’t as traveled as much as others, but your path is our path now. Maybe it’s not the path we were expecting to be on prior to your birth, but I promise you, it’s miles from the path I thought we’d be on six months ago.
Honestly, I don’t care about what path we’re on, as long as we’re on it. For all the adversities you’ve been given. For all the uphill battles you’ve already faced at your tiny age, and for the countless ones ahead, for yourself, for myself, for all of us. You’re excited, exuberant gummy smile, that people have said is only for me, makes every single thing worth it to the umpteenth degree. I am so very proud of you, son. So much so, I have to stop myself from talking too much when people ask me how you’re doing. I could just keep talking about you and your accomplishments. It’s truly ridiculous.
You will no doubt be an inspiration to so many, as you’re already such an inspiration to me. I wish I could tell you now, in this moment, how proud I am of you, and you’d understand. (I mean, we both know I tell you, regardless if you understand it or not). You are so strong. It breaks my heart and brings me to tears constantly that I can’t just fix everything for you. For you to have an easier path. For you to be able to grab my beard or mommy’s hair. That you don’t have to face surgery in a few months. I hate we’re going to be missing out on bath time and taking showers while you’re in your cast. I hate all the struggles you’ve had to face, and all the ones approaching.
I hate them.
I also know my son can handle them. (and handle them better than his dad) That you’re strong and determine and while you might not be happy about it at times, that you’ll come out the other side with a smile, a coo, and be better and even stronger for it. Every trial you face, you handle it, you overcome it, and you move on to the next. You’re my own personal tiny Hercules.
You’re forever my hero.
I love you so, so very, very much. The first six months are behind us. Now let’s show the next 6 months not to mess with ole HG!
On your left, always,