Looking Back on AMC Awareness Day 2022

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By Michael

It has been 2 months since our second AMC Awareness Day, and it is a curious thinning looking back on it.

Another emotional day for us to be sure. I’m sure one day I’ll be able to pinpoint it better, to put into elegant words the wave of emotions that are ridden on June 30th. It is still very much a unique experience for me, and I suspect it will be for the years to come.

Our second experience, while emotional, was very different compared to our first. It felt less eventful than last year. Not as many people made it a point to wear blue. Fewer family members took the time to acknowledge it. Despite it only being our second one, it already felt like it has become an afterthought for certain friends and family.

I’m not saying that the lack of enthusiasm and acknowledgment was universal across the board. There were still plenty of people who helped bring awareness to Arthrogryposis on June 30th. They posted on social media; they wore their blue, but the steam behind the momentum it felt like we were starting last year had faded.

I can’t help but wonder if that’s an “out of sight, out of mind” situation.

Last year, I was blogging at a minimum, monthly. Keeping everyone updated on HG’s progress. By the end of that first year, it had become a struggle to get the posts out, so I hung up my monthly posting hat after HG turned 1 in March. Since then, I’ve rarely posted. Honestly, I’ve taken a back seat to doing much writing at all the past few months across the board. This format being an outlet for me to help myself maintain a sense of balance had lost that power.

After the year we’ve had, it was becoming harder for me to maintain the voice and tone I started all this with. No one wants to read about struggles, be they Harrison’s or my own. I tried my best to not over-share on those, especially when we’d take a step back, and that made some things harder to write.

Also, there are some things I just like keeping to myself. I started becoming somewhat selfish with the milestones and memories. I was turning into Gollum over his ring. (Sorry, LOTR reference).

It just wasn’t me, though. My wife was doing the same on Instagram and Facebook. After a year of sharing, we were tired.

We quit telling our story, and sharing our journey (I hate using that word) and thus I think people forgot or did not feel as if it was as important, simply because we weren’t sharing.

The realization is that this past year hasn’t been a one-off. This past year has been the first chapter in the book we’ll be writing the rest of our lives. This isn’t something that will eventually “work itself out” or that Harrison will be cured of by the time he is 3. This is Harrison’s life. This is our life. Arthrogryposis is part of our lives from now on. There is no cure, there is no remission. There is only this.

So, looking back on AMC Awareness Day 2022, I’ll admit, selfishly, I was disappointed. I still had moments of emotion when I saw certain people wearing a shirt to support my son (still cursing my uncle for making me cry over a blasted shirt!) however the emotion of this year didn’t live up to or match the swelling of emotion from last year. I will openly admit it disappointed me not to see certain people take 5 minutes out of their day to just wear blue and post a photo online. Just so one other person may become aware of Arthrogryposis. Just to show support for our son.

That may be my fault within our circles because I’ve not been sharing, and it may not be. I’m not one to judge that. However, it has highlighted something I had failed to consider these past few months. June 30th may be AMC Awareness Day, but that doesn’t mean I shouldn’t be helping bring awareness to this condition all year round.

This platform has been my outlet, but it has also been a platform of awareness. Something I’ve realized I need to be better at and do more of. This here, this tiny corner of the internet is where I can bring awareness, where I can be an advocate for my son. To help not only bring attention to his conditions but to bring awareness of how lacking the world is, in just simply being aware.



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