Trip 34 is officially in the books.
Honestly, I really didn’t expect to have much to write about this time.
I figured this post would mostly be about getting Harrison’s new back brace (TLSO), spending Mother’s Day traveling to Greenville, and maybe talking Jenna up a bit because of it being Mother’s Day. I really expected it to be fairly routine and, really, to be a fairly short post.
Leave it to Harrison to completely alter that expectation.
Last month was the first time we tried what is now, for the most part, our new routine. Instead of rushing out after work on a Thursday evening for early Friday morning appointments, we now leave on Sunday and have appointments midmorning on Monday.
And already, after only doing it twice, I can confidently say this has been a much better process for us.
We get to take our time. We leave at midday. We get to the hotel at a reasonable hour. (No more familiar night manager, though.) Nobody feels frantic or exhausted before we even walk into Shriners. It has just been a much calmer experience overall, and honestly, I think it has been a huge positive for Harrison, too.
Because what should have been a simple post about getting a back brace somehow turned into a trip where Harrison casually decided to check off not one, but two major milestones.
The first one was already seen by a lot of people if you follow my personal Facebook account.
Harrison just suddenly decided he would walk barefoot.
And when I say suddenly, I mean suddenly.
This has been a goal for years. Not necessarily a top priority goal, but definitely one of those things you hoped might eventually happen someday.
Even before his surgery back in November, there would be times during appointments with Dr. Hyer where she would ask if he was walking barefoot yet. Before surgery, he could tolerate standing barefoot for short periods. He could maybe take a couple of steps. But it was never truly walking.
It was more like controlled falling. (or as Jenna put it, “falling with style.”)
He would take a step or two and immediately lean forward into somebody’s lap or toward furniture. Momentum carried him more than balance or control did.
But this trip?
This kid just got up and decided to walk.
Flat out walk. No AFOs. No shoes. Just good ole bare feet. And not just straight-line walking either. He was turning. Pivoting. Stepping over things. Kicking balls. Doing all these little things that seem normal until you realize how much balance, control, confidence, and body awareness they actually require.
It actually started at the hotel pool.
One of the nice things about this new travel schedule is that we now get to the hotel early enough on Sundays to actually enjoy the evening a little. We can go swimming, relax in the hot tub, let Harrison play, and unwind before appointments.
Apparently, the motivation of wanting to walk to the edge of the pool and jump into Dad’s arms was enough for Harrison to throw caution and any preconceived notions to the wind and walk barefoot on concrete.
Not only walk barefoot, but carefully positioned himself at the edge of the pool with nuanced control and balance so he could jump to me. He was lining up his toes at the edge of the pool!
Let me say this again: he was taking the time to line up his toes (which until this moment he had never seen while walking). Having the confidence to bring them to the very edge of the pool before pushing off towards me.
And it’s hard to explain properly what that felt like to witness.
Because this really is one of the best examples I can think of when it comes to Harrison being a “mind over matter” kid.
He is absolutely the type of child who does things on his own timeline. But once he decides he’s going to do something, he is going to do it. No questions asked. It just is what it is.
And when I say this came out of nowhere. I truly mean this came out of nowhere. Not only was this unexpected, but it wasn’t even on the radar.
Just the day before, at home, he had taken a couple of barefoot steps in the house, like he always had before. Heavy-footed. Unsteady. Immediately leaning onto something.
Nothing dramatic.
Then, barely 24 hours later, he’s walking barefoot across concrete, carpet, hardwood floors, rugs, and stepping over the threshold into our hotel room, like he’s done it his entire life.
I’m not exaggerating when I say I literally stood there with my mouth hanging open.
Jenna was recording the video of him walking through our room because I honestly didn’t know how to react. I just held the hotel room door open while Harrison casually walked over the threshold and into the room, completely barefoot and completely in control.
It didn’t feel real.
And beyond just being emotional or exciting, it represents so much.
It shows strength.
It shows confidence.
It shows sensory growth.
It shows body awareness.
It shows understanding.
Because walking barefoot has never been just one hurdle for Harrison.
It has always been multiple hurdles layered together.
For years, even standing barefoot could be sensory overload for him. The bottoms of his feet were incredibly sensitive. And when you consider that he spends the overwhelming majority of his life wearing socks and AFOs, it makes sense.
His feet have lived in braces the majority of his life.
There was actually a conversation a few years ago during an intensive therapy session at Greenville that stuck with me. I think it was around our 19th trip when we were working with Trish. She told us about another child she worked with whose parents were extremely diligent about keeping braces and socks on constantly.
After one procedure, the child temporarily didn’t have to wear braces overnight.
And she almost couldn’t tolerate being barefoot in bed.
The sensation of sheets touching her feet overwhelmed her because she had never experienced it. It made it difficult for her to sleep.
The thought of a child, I think she was probably 5 or 6, having never felt her bedsheets against her feet. That conversation has stayed with me ever since.
Because while we absolutely stay diligent with Harrison’s braces, there have been times during the summer when his feet were just exhausted. Hot. Red. Beat up after therapy, walking, and nonstop activity.
And sometimes we let his feet breathe.
Some parents or doctors might disagree with that. But to me, it mattered that he be comfortable experiencing the world barefoot, too. That he could feel carpet, sheets, hardwood floors, concrete, grass, whatever life throws at him, without immediate sensory overload.
And honestly, I have a hard time believing that didn’t help lead to this moment.
Because within a day and a half, this child walked barefoot across almost every texture imaginable.
Hardwood.
Rugs.
Concrete.
Carpet.
Tile.
(And since we’ve been back, you can add grass to that as well.)
Those are all very different sensory experiences for a child who hasn’t spent his life barefoot.
So yes, this milestone was huge.
And fortunately, the next day, while we were at Shriners Children’s Greenville, we actually got to show the video to Dr. Hyer after she popped in to say hello.
She reiterated something she had told us during our last visit.
This was always the goal.
Mobility.
Independence.
Functionality.
This was what all of this was for. All the hours of therapy and work. All the surgeries and scars. The effort Harrison has put in, leading up to these steps.
And hearing that while showing her a video of Harrison casually walking barefoot for the first time was honestly a pretty incredible moment.
Now, granted, I jokingly told Jenna that her Mother’s Day gift was apparently full mobility for our child, because there is officially no putting him down somewhere and expecting him to stay there anymore. Which, honestly, is probably the most exhausting and most perfect Mother’s Day gift Harrison could have given her.
That chapter is over.
He is mobile in a way he has never been before.
But somehow, that wasn’t even the only milestone from this trip.
Before our appointments Monday morning, we continued another part of our new Greenville routine.
We stopped by Summer Moon Coffee for coffee and pastries before heading to the hospital.
And honestly, I love this part of the trip now.
The weather has been beautiful on both visits. Jenna gets coffee. I get a chai, and we grab something sugary for Harrison, which lately has meant the blueberry muffins he seems to have fully approved of.
We just get to sit and hang out outside in the sunshine for a little bit before we head into the hospital, knowing we’ll probably be there for several hours.
It’s peaceful. It’s a nice little mental cushion before walking through those sliding doors.
It’s become one of those little things that make these trips feel less stressful and more normal.
And surprisingly, this visit itself actually went smoother than expected.
We met with Megan at POPS first to get Harrison fitted for his new TLSO brace. And Megan is incredible with him. She just gets him. She understands how to interact with him, whether he’s happy, frustrated, cooperative, or completely over it.
I don’t know that Harrison necessarily has “favorites” at Shriners, but Megan is definitely top tier for him.
By the end of the visit, he actually gave her two high fives!
That alone should probably be documented in medical history somewhere.
The brace fitting itself went really well. Minimal adjustments. Better tolerance than expected. He even stood and took steps while wearing it, which honestly surprised me. He just went for it, the very first opportunity he had.
Megan also sent him home with a Higgy Bear, complete with its own tiny TLSO, which now gets to join the rest of his growing Shriners bear collection. And yes, the bear-sized back brace is every bit as great as it sounds.
Then came X-rays.
And honestly, he did really well standing for them. That doesn’t mean he was thrilled about the entire process, because by the time we were waiting to meet with Dr. Lawing, he was very much over it. But he did it.
And this is probably where I finally need to talk more openly about Harrison’s scoliosis.
I’ve mentioned it plenty of times before. I’ve mentioned braces. I’ve mentioned spinal concerns. But I don’t know that I’ve ever really explained just how significant his curve actually is.
Partly because there has always been so much else going on that the spine kind of became just one part of the overall picture.
But we are clearly entering a phase where the spine is becoming more of a primary focus.
And seeing the side-by-side X-rays really drove that home.
Without the brace, our boy is pretty crooked and bent.
With the brace, he’s still a bit bent; there is visible correction.
Not perfection.
Not magically fixed.
But correction.
Enough correction that you fully understand why Dr. Lawing wants Harrison wearing this brace as close to full-time as possible.
That’s where we are now.
The spine is the current priority.
We know surgery on his back is coming someday. This is not an “if” situation. It is a “when” situation.
And the goal now is simply to push that “when” as far down the road as possible.
That does create challenges, though.
Because so much of Harrison’s independence comes from how he uses his body. He bends. He adapts. He uses his mouth constantly as a tool because of his lack of arm and hand function.
And keeping him upright in a TLSO is going to limit some of that movement.
So now comes the balancing act.
How do we protect his spine while still preserving as much independence as possible?
That’s the next challenge in front of us.
But honestly, despite how stressed I was leading into this visit, I walked away feeling positive.
Because seeing that his spine responds to the brace matters.
That means this is helping. That means when he’s upset or frustrated, when he’s in his TLSO, we know we’re just not doing it on a whim. We have seen with our own eyes what being in that brace does for him. While not eliminating the stress and guilt, it definitely helps lighten the weight of it all.
And when you live in a world where so many things feel outside your control, finding something that does help matters a lot.
And then, because apparently this trip still had one more surprise left in it, Harrison checked off yet another milestone.
Potty training progress.
Now, potty training a physically disabled, nonspeaking child is obviously a very different experience than traditional potty training.
There are extra hurdles.
Extra communication barriers.
Extra timing challenges.
And it has all happened very slowly and very much at Harrison’s pace.
We’ve had successful attempts going number one before.
But during one of the long waiting periods while Megan adjusted the brace, it became pretty obvious that Harrison needed to go to the bathroom.
And if you know Harrison, you know this child strongly prefers being a “home only” pooper.
If he can wait until home, he absolutely will.
But this time?
Time was running out.
So we pulled up his AAC device and asked if he needed to go potty.
He answered yes.
We asked if he wanted Mom to take him.
Again, yes.
Off they went.
A few minutes later, Jenna and Harrison came back smiling because there had been success.
A successful number two. In a public restroom. Away from home.
Which, honestly, might deserve its own milestone checkoff itself.
So yes, somehow this Mother’s Day Greenville trip turned into an absolute avalanche of milestones.
Walking barefoot.
Adjusting to the TLSO.
Walking in the TLSO.
Public restroom success.
Improved mobility.
Improved confidence.
Not exactly the “simple little update post” I thought I’d be writing.
We don’t go back to Greenville now until September. After seeing how well he’s doing overall, they decided to give us a few months to focus on brace wear before doing new X-rays without the brace to evaluate how his spine responds over time.
So for now, we get a summer free of Greenville trips. A summer to focus on brace wear, let him keep building on all this new confidence, and start preparing ourselves emotionally for the fact that kindergarten is somehow right around the corner.
But apparently not free from surprises.
Because if Trip 34 proved anything, it’s that Harrison is still very capable of completely rewriting expectations when he decides he’s ready.
