A List for New Arthrogryposis Parents

For such a rare condition, AMC Parents (Especially Dads) are far from alone

by Michael

Last week our son turned 1. This means I’ve been an arthrogryposis dad, and we have been arthrogryposis parents for a year now.

I’m not sure that the man that sat broken-hearted in the NICU at the University of Kentucky Hospital would have believed we’d be sitting where we are today. I felt lost and alone in a way I’d never experienced before. The same lost and lonely feeling creeps back in from time to time, but it is only a shadow of what it once was.
It has not been easy to get to this point. It’s a lonely road, especially for us Dads. So, after having a year’s worth of experience, memories, victories, and failures, I thought I would break down some of the biggest takeaways from the past year.
I leave this list not just for new Dads and parents who are making their first steps on this new road, but also as a reminder to myself. Sometimes you need to remember just not where you’ve been or where you’re going, but what path you’re on as a whole.

You’re not alone.

First off, no matter how you may feel, you’re not alone.
It may feel like you are alone, but you are not. Nothing is more isolating than for your newborn to have a condition most people have never seen or heard of. That’s where we found ourselves when our son was born. The doctor who delivered our son had only seen one other case in 20 years of delivering babies. All the nurses were unaware. When we learned how to say arthrogryposis, we had to help certain personnel learn how to say it when they were reading it off a chart. (no joke)
Those first few days were lonely. Isolated, because we were learning these new unfamiliar words and conditions. We started off with no proper direction. Fortunately, we were blessed with a nurse who had worked with arthrogryposis babies before on our third day in the NICU. Her helping us that day, reassuring us on how we could handle our son, was the first day that I truly took a breath and didn’t feel as if we were alone.
There are many great groups on Facebook for Moms. I think the primary one is called Arthrogryposis Moms. You also have communities such as AMC Support that are great for finding contacts and other parents. As Dads go, there isn’t much for us and us alone. Seems to be the nature of the beast in these scenarios. However, social media is a wonderful thing, and it’s easy to find other AMC dads. It is just not as vast and prominent as moms are. (We will stay away from those discrepancies for now.) Ultimately, the point is, you’re not alone. Not as parents or as a father. I mean, you have one right here. Hello there!

It’s ok to grieve

It is. I promise. You’re not a bad person for grieving for the child you had in your head. We’ve all done it. It is ok. Just don’t lose sight of the fact you still have your little one. Things may not be as you envisioned, but that baby still needs their dad. More so than ever.

Don’t forget to document and record

I wish I had someone telling me this back then. Not taking more photos. Not documenting things more, such as how our son’s feet were turned, or his hand and finger placement is possibly my biggest regret from this past year. Those first few precious months especially. We were shell-shocked and going through the motions mostly, but I still wish we had taken more photos. To remind ourselves where we started and how far we’ve come. It may seem scary right now. You may be taken aback at first and not feel like it, but you’ll regret it if you don’t. So take photos, take hands and footprints if you’re able to. In the long run, you’ll be thankful to have those things. Plus, when you hit moments of regression or plateaus, it’s good to have that reminder of where you started from. A reminder that while it may not feel like it, you’ve been moving forward since day 1.

Don’t Compare.

(Hoping my wife eventually reads this post, because that’s something I am constantly reminding her of.)
Once you get online and start doing your research, and joining the different AMC groups and hashtags, you’re likely to compare your child to someone else’s. It is almost certain to happen. Don’t do it!
That’s not fair to you, that’s not fair to your child. You risk setting the bar of expectation too high or too low. It’s an easy rabbit hole to fall into. Fact is, if you do any amount of searching or research online, it’s going to happen.
Just remember, research is good. Comparing is bad. You are on your child’s path. No one else has a path like theirs. Never lose sight of that.

Celebrate the milestones

Look, your child’s milestones are likely going to differ from that of a typical child their age. That doesn’t mean you shouldn’t celebrate the milestones and accomplishments they make when they make them.
I promise you, no matter what you think now, you’re going to want to celebrate your child when things happen, as you should. Don’t hold back!
Take us, for example. Our son is the oldest of 5 babies born between our two families in the past year. Our son has four younger cousins, ranging from 11 days younger all the way to just a month younger. His milestones have not been the same. He has cousins that are walking, but that hasn’t stopped us from celebrating his ability to sit up by himself. Something that felt like a distant pipe dream a year ago.
Just because you’re not on the same timeline and calendar as other parents, doesn’t change that you’re still a parent to a small child making accomplishments and reaching milestones. Never let go of that, and never shy away from celebrating.

Be an Advocate

This may seem like a natural thing and unneeded addition to this list, but after just a year, it becomes extremely apparent that not all parents are advocates for their children.
Don’t be a spectator, be their advocate. The voiceless need a voice. Be it with doctors, therapists, acquaintances, or family members. Be their advocate! If you’re dissatisfied with the treatment their receiving, fight for more tests, or go to other doctors or therapists. Don’t settle just because someone across from you in a lab coat is trying to talk over you.
We ourselves had to move on from our first visits and referrals. It happens.
We’ve had to have discussions about words and mentalities when it comes to our son with family members. Don’t wait until they’re older to start. Start advocating for them on day one, so the foundation is set.
All children look to their parents to be their advocates, but having a child with a disability means that your job as an advocate is exponentially more important.

Block out the noise

When I say block out the noise, I mean everything. Doctors, therapists, your spouse, family members, and more. You’re destined to get thoughts and opinions about your child from every facet you can imagine, and while some are valid and valuable, they risk being drowned out by everything else. Find ways to block out all the noise so you can refocus from time to time.
From simply disconnecting from social media and family groups to watching a movie, hitting the gym, or zoning out on a video game for an hour. You need to find times and ways to block out the noise.
If your life turns into nothing but therapies, doctor appointments, the latest studies, or exercises, you’re destined to miss the intangibles, because you’re too focused on all the surrounding noise versus what’s in front of you.
Find your ways to refocus. For you and your child.

Take a Breath

I know everyone’s case and experience are different. For us, we had no idea of our son’s condition until he was born. The first day was chaos and panic. I wish I could say that it didn’t take us a few days to get ourselves together, but it did.
If you’re like us, and you were unaware of your child’s condition, you will for certain go through the stages of grief. Honestly, I’m not sure that ever fully goes away, not completely. However, just like any form of grief, you learn to live with it and move on.
However, don’t feel bad if you have to take a moment and take a breath. Raising a newborn is stressful enough. A newborn with unplanned conditions and complications is a whole different beast.
Like most things in life, this isn’t a sprint, but a marathon. Surgeries, therapies, castings, and braces all take time. You’ll wish you could snap your fingers to change a thing, but you can’t. This is something you cannot rush, so be sure you give yourself time to breathe.

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