We’ve had one heck of a few weeks. Of course, it’s all relative, right. Because considering the devastating events currently taking place in Ukraine and so many other places, we have very little to complain about.
Complain, no. Process, yes.
If we don’t process, we compound. And if we compound, all of that manifests some other way. It’s a vicious cycle.
So we’re working really hard to process despite all of the really really hard things happening around us. The world is so heavy.
Two hospital stays in two weeks wasn’t easy, nor is sifting through all of the information that was thrown at us in that same amount of time.
But this experience has provided a platform for gratitude. Not just in the fact that we were grateful to learn that Max isn’t having seizures or grateful that his finger is healing, but also grateful and privileged quite honestly, to watch Max surprise us in the most encouraging ways.
Max has risen to the occasion. Every single time. As a parent of kids who struggle with sensory integration I know from experience that things rarely go as planned. As such, my brain has been conditioned to prepare for every possible scenario to the best of my ability. And honestly, it’s that part that feeds my anxiety the most. The not knowing what to expect and/or if I’m adequately prepared.
Our first hospital visit was a surprise. So we had nothing with us for the first night except the clothes on our backs and our phones. I had only packed enough diapers and snacks for what we had planned for the day (lesson learned) and we were running on empty.
Despite Max doing fine with minimal access to toys and his regular sensory tools from home on our unexpected hospital stay, I packed up half of our house to go for our extended EEG a few weeks ago. Mike met us at the hospital and wheeled in a wagon full of toys, games, and even a collapsible camping hammock chair that I planned to use if Max needed swinging input. I had all of our chewing, swinging, playing, snacking and deep pressure needs covered. And probably those of every child on our floor. I think on some level, packing and planning was the only thing I felt I had control over. So I did it with fidelity.
Max needed very little of what I packed. It was there in case we needed it, but he was perfectly happy watching a show, eating some of his favorite things, exploring the room, and gazing out of our 7th floor window. I should have realized that. He’s a pretty easy kid all things considered.
I thought for sure he’d rip the electrodes off of his head. He doesn’t wear hats or mittens and is so protective of his face that he doesn’t like anything on or around it. I envisioned them having to reapply the electrodes more than once – I had the whole scene playing on a constant reel in my head. I was mentally prepared for a three day battle even though I knew that Max wasn’t the first kiddo with sensory issues to have an EEG.
The process of the electrodes being applied to his head was the worst part. He didn’t like being confined to a bed, although didn’t hate the body wrap they put him in. He didn’t love the wet glue or the shot of cold air they used to adhere each electrode – but who would? No amount of Peppa Pig or Blaze and the Monster Machines was going to help. So we just gritted our teeth, clenched our fists and got through it.
He had 26 electrodes attached to his head, a gauze bandage wrapped around them, and a knit cap over them that also encased the wires. The wires were a few feet in length and connected to a box in a backpack that he wore around. That was all connected to a 30 foot cord that allowed him to be hooked up, but still mobile. He didn’t love the wrapping so they topped it with a foam helmet that had a chin strap. Also not his favorite.
I just knew we’d be exchanging tugs for the length of our stay, he’d tug on the wires or his helmet and I’d tug them back into place. And that happened for a while. But then, it didn’t. It was as if Max realized this was just a part of the deal and he left it all alone. And in that moment and the moments following, I felt my angst subside a little bit with the understanding that our boy wasn’t just tolerating, he was adapting. ADAPTING.
We returned home after our stay relieved to know that Max isn’t having seizures, but that his pauses are likely a part of his processing. He missed quite a bit of school amidst the Omicron variant and appointments so we were glad to have him return the week following his EEG. There again, while I had a feeling in my gut that he’d return to his normal routine without a stumble, I was prepared for a meltdown that mirrored the beginning of the school year.
When we arrived at school on his first day back, a big smile adorned his sweet face. I got him out of the car and he walked with confidence and then RAN to the door of the building. He saw his teacher, went straight to her and never looked back. My heart simultaneously leaped and melted.
We’ve passed week three of him being back in person and it has been the same thing every day. Not a tear shed. Not even a look of trepidation. Another break through really. He adapted to being away from his peers and his daily routine and then adapted right back no matter how much time had passed.
I was sharing all of Max’s recent successes with my aunt who plays a significant role in the ways we support his development including connecting us with our most amazing craniosacral therapist. She said something that really stuck with me. “You’re seeing less of his challenges and more of his break throughs.” Yes! We absolutely are!
While we have a bit of a scary road ahead in addressing his Chiari 1 malformation at the base of his brain, we’re really looking forward to seeing less of his challenges and celebrating more of his break throughs. Kids are far more resilient and adaptable than we give them credit for. There’s a lot to learn in that.