Our latest visit to Shriners Children’s in Greenville, SC was last week. As I always do, I wrote my blog post covering the visit over on The Greene Affect. Since the beginning, I’ve tried to be uplifting and playful with these posts. I entitle the entire series Greene does Greenville, which is followed by a subtitle. Last year I tried to maintain a feel of movie titles and movie sequels. So far this year, I’ve been less in line with that, and more playful. Either way, I’ve tried to be colorful with titling my posts.
So that gives you an overall feel of how I’ve approached things, right at the onset. Yes, I’m writing about us taking a 10-12hr round trip to see an arthrogryposis specialist. My son, more often than not, is getting put into a new cast or new brace. At times, it very much has felt like going through the motions, however, I still document. Clearly not as engaging or as entertaining as I see myself, due to the lack of book deals, but I still maintain.
Up to this point, I’ve shared the bulk of my posts here as well. I’ve treated it as syndication.
I want to get away from that, at least a little, but still want this site to be a place I can share stories and updates on our arthrogryposis story. I am an arthrogryposis parent, an arthrogryposis father even. Our stories are few and far between, as is.
So why am I writing a blog post on this site, about a blog post on my other site?
It boils down to this: transparency.
I’ve documented on here before that my other blog is more for family and friends. My wife shares stories and photos and posts on Facebook, and I write. I did a blog because of the organization and structure it can have, along with allowing me to share it in multiple locations.
Plus, I enjoy looking at and watching traffic and stats.
I’ve been watching the pattern for a few months, and a few things have become very obvious.
- People only want to read and react to happy, joyful, good news posts.
- The people who go read a post when it is shared on Twitter or Facebook ONLY read that one post. They never look at anything else on the site.
- If I don’t share a post on social media, it goes unread. (I have done zero SEO work on this site, so there is no search traffic)
With my latest post covering our Greenville trip, I was a bit more toned down and real with it. We’ve kind of hit our first speed bump/roadblock in a while, and it sucks. We knew it was a long shot that the doctors would be able to cure our son’s scoliosis, but to have the book closed on that possibility after only one Mehta casting was a bit of a gut punch.
So, I wrote about our visit and covered that part of our trip.
You can tell people don’t enjoy reading that. People being family, friends, and acquaintances. No one wants to read the reality of things. They only want to read of things improving, milestones hit, and expectations being surpassed. They want to act and behave as if this is only a stepping stone for our son, and that he’ll be cured of all of this in a few years.
Arthrogryposis doesn’t have a cure. Nemaline Myopathy doesn’t have a cure. People don’t like being reminded of that. They only want to cheer on my little guy. They don’t want to think about the hardships we face currently or the ones that he will in his future. They don’t want to be reminded that the world isn’t all rainbows and sunshine and that maybe their God isn’t performing the miracles they proclaimed he was a few weeks prior.
No, the reality is the bulk of the people that read my blog are scared. They’re scared to admit they don’t know what they’d do if they were in the shoes of my wife and me. They don’t want to think about such sad things as my son being unable to throw a ball or give his mom a hug.
Hell, simply writing more realistically and neutral tone caused my own mother to text me, thinking we had failed to share something with her from our latest visit. I had to make her go back and reread my words for her to realize she had ignored what I actually had said. She is so accustomed to my more optimistic writing that even she took my more realistic approach as being negative and equally meaning there were things we hadn’t shared with her.
It has taken me 18 months to realize I’ve been writing to and for the wrong audience. I was writing, wanting people to cheer for my son and to support him. To not look at him as anything more than who he is. Hoping that in sharing our story, as he grows, he is not an enigma to people who meet him in our small community. That he’s not someone to feel sympathy for or someone to fear. I’ve been writing in a way to point people in the direction I’ve wanted them to go, versus them choosing that path on their own, simply based on our story, as it happens. Coming to this realization, I feel I’ve done a disservice to my son, my wife, and everyone involved.
Being a father has its ups and downs. It’s victories and defeats. Being a father to a disabled child just increases those peaks and valleys, plus adds a few more in there. It is also a more lonely road to follow than most realize unless you’re on the same path.
I need to do better. Hell, we all need to do better, but if I’m going to continue to write, blog, and share things with the world, I need to be better, and do better for everyone, and to hell with traffic and stats.
The blog post in question is below. You can judge yourself on how it reads, and if you’d like to know more about our journey so far, you can check out the blog here, or check out even more over at The Greene Affect.
GREENE DOES GREENVILLE – DINO-MITE!
We made our latest trek to Greeneville last week for our second round of Mehta casting and our latest set of AFOs. The more trips we take, the longer it’s taking me to recover from them. It is less the physical toll of the early morning, long day, and subsequent drive, but the weight of the emotions that are taking longer to recover from. I’ve always known this was going to be a marathon. That this, all of this, was now a reality of our lives, but even after 18 months, I still don’t have my stamina up to where it needs to be.
The process and the schedule of the day are pretty straightforward already. We’ve gone through nearly a dozen castings of some type or another at this point, so our son having a cast on is nearly more the norm than him not having one.
Having to leave him as he’s taken away by nurses to be put to sleep for a procedure doesn’t get any easier. The anxiety, while growing more and more familiar, is still there.
Once we’re shown to our room to wait, we have our routine. It consists purely of going and grabbing breakfast at the cafeteria, then waiting, sometimes grabbing a quick nap, before we hear from a nurse or Dr. Pete himself.
This visit was Dr. Pete coming up to chat with us after the procedure while HG came out of anesthesia.
I’m sure doctors go through their mental gymnastics and training to maintain as solid a poker face as possible when talking to patients and parents. Up to this point, all doctors have maintained a fairly steady calm with us, outside the day of Harrison’s birth. Well, Dr. Pete seemed somewhat off-center. It was subtle, and not overtly concerning, so much so, that the difference didn’t even register until looking back on what he said.
One of the first things he mentioned as he sat down to talk to us after letting us know that the procedure went fine was to emphasize how strong Harrison is. Even while being put under, our kid still was stubborn, it seemed. Acknowledging his strength and tenacity, however, seemed to make the next thing Dr. Pete had to tell us, weigh extra heavy on him.
Essentially, the book has been closed on the possibility of curing Harrison’s scoliosis. The combination of the position of the curve and the rigidness of joints that comes with Harrison’s AMC makes it difficult to get any type of correction. Dr. Pete said he had been able to get a correction up to around 10 degrees, but that was the extent. We’ll be going through a few more castings, but we’ll likely be going back to bracing sooner rather than later. If you read between the lines of what Dr. Pete was telling us, I suspect we’ll only be seeing 5-6 castings in total.
At one point, as he was talking to us, I halfway expected him to tear up. You could tell it affected him. If I hadn’t already been on team Dr. Pete, this visit had me ready to sport the hat and sweatshirt and wave the foam finger.
So, we’ve hit our first speed bump in a while. It sucks, but we knew this was the likely outcome. But no matter how small the hope and optimism are, it still hurts when its flame fades.
The primary focus now is to continue to move forward. We may not be on the path we were or were hoping to be. The key is, however, that we’re still on a path, moving in that same forward direction that we were before. The ultimate goal and destination are still the same. It’s just the road to get there may be a bit more challenging than the path we were on.
And while it sucks, the day and the visit as a whole were not lost, as we had many more stops to make before heading home.
After some rest and cuddles, while the plaster dried, we went down to casting, where they clean up the Mehta cast and ensure it is comfortable and functional for Harrison. After picking out a stylish dinosaur patterned wrap, we made our regular stop at POPs to pick up the latest model AFOs.
These new AFOs look so big by themselves it looks crazy, but fit him and look great on him. These latest AFOs, Harrisons 4th pair so far, are so much larger than his first pair that they can fit inside his newest. It’s crazy!
Not only did we get new AFOs, but we also walked out of POPs sporting our first pair of Billy Shoes! Billy Shoes are shoes made to easily get on and off with an around-the-shoe zipper. Extra bonus for Mom and a nice little perk to end the day with, these Billy Shoes are Arthur edition Billy Shoes!
So there we are. Another visit in the books. In six weeks we do it all again with cast #3!