Max had surgery last week. Three pretty routine procedures – ear tubes and the removal of adenoids and tonsils. But with the myriad of other things he has going on, they kept us overnight (which eased my Mama heart in the best way). I was grateful to know we had the support of a whole medical team if he struggled with pain or hydration.
This was his fourth hospital stay in the last year with the most recent (and scariest) being his brain surgery last April. So it was safe to say we were all a little on edge. Not because we were worried about the outcome of the procedures. More that we all had a lot of feelings and were incredibly anxious to have surgery behind us. Anticipation is often the absolute worst part. It’s possible that much of the trepidation came from the reminders of the last year. I know that was a lot of it for me. And Fletcher for sure.
What I know to be true about our little clan is that we all navigate feelings differently. Much like me, Fletcher is the picture of an empath. He feels on a visceral level. Where he’s different is that he is quick to put words to his feelings. He always amazes me with how he articulates exactly what’s going through his head and how it makes his heart feel. I have some things to learn from him.
Mike tends to internalize feelings and works to be stoic leading up to an event. He channels any angst he’s feeling in getting immersed in a show, work, or focusing on something football related. There’s a part of him that feels like he needs to be steady for me. Sometimes that’s true. When he falls apart is on the day of, specifically when Max is taken back for surgery. That’s the hardest for him.
The way I navigate situations like this can best be described as unpredictably, productively messy. I go into hyper overdrive. Cleaning, organizing, checklists, playing out every possible scenario in my head to make sure I’ve thought of absolutely everything, and generally avoiding the things I know will knock me down a few pegs on the anxiety scale. Things like yoga, breath work to regulate my central nervous system, exercise… you know… the really productive ways of navigating anxiety. But on surgery day, a switch flips. The nervous butterflies in my stomach magically disappear and I become a lot like my mom in similar situations. I’m even, matter-of-fact, calm and ready to conquer any obstacle in front of us.
Max is always delightfully himself. He handles my whirling and twirling with ease as he unapologetically reminds me in subtle and not so subtle ways that he has needs that need to be met.
The important thing for us to remember is that all of our feelings are valid and so are the ways we work through them. A part of my fervor is to make sure everyone has what they need to make whatever we’re navigating go as smoothly as possible. Luckily, last year’s big surgery taught us a lot in terms of setting all of us up for success. And I should add, success doesn’t always come neatly packaged with a perfect bow on top.
Here are our go-tos:
Visual Schedules: Both of our boys are very visual. So they each had a visual schedule that let them know what they would be doing, where they would be and who they would be with. Max’s surgery day schedule had things like a picture of the parking garage, the hospital, him in a hospital gown, a photo of his surgeon, him recovering with his blanket, and a picture of Mike and me,
Fletcher’s included his schedule for the day – morning routine, school, getting picked up, being at my parents house, etc. He knew he would be picked up from school by his Mimi and Papa on surgery day, but was feeling like he wanted to know exactly what they would do after school, so he FaceTimed them before bed the night before and he got to help decide how their time will be spent…giving him a tiny bit of control over what’s happening. Control (no matter how big or small) is key for littles in times of uncertainty.
Updated Communication Board: Max uses a communication board as one of his primary ways of getting his needs met. I created a page just for his hospital stay so he would have easy access to the big things he’d likely need to communicate (popsicle, apple juice, water, throat hurts, doctor, etc.)
This time around I also made him a small PECS board (paper communication board with photos of a popsicle, mom and dad, blanket, juice, etc.) to keep with him during surgery so when he woke up in the recovery room before Mike and I were able to see him, he could see our faces, ask for us (or a popsicle), and know we’d be returning soon. It didn’t occur to me to do this for his brain surgery last year and when we got to the recovery room he was inconsolable. That’s the last time I’ll ever make that mistake.
Comfort Object: Before Max’s brain surgery I took both boys to our Children’s Hospital so Fletcher could SEE where his little brother would be during his stay there. We stopped in the gift shop and he picked out a monkey made out of the sequins that you can flip up or down. He took that to school with him the day of Max’s surgery and kept it in his backpack, knowing he could lay eyes on it if he needed to. He decided to do the same thing for Max’s procedure last week. It’s become our surgery comfort monkey of sorts.
Max’s comfort object is his blanket which went with him into surgery and was there with him before we were able to see him. The medical staff tried to put a sticker on his blanket with his name on it. That was a hard pass for him. “If the sticker wasn’t on this blanket when I got here, it doesn’t belong on there at all.” 🙂
Books: Fletcher and I read our favorite books the night before surgery- many of them gifts from my fifth grade teacher (Goldilocks and the Three Dinosaurs, Red and Lulu, Miss Nelson is Missing). Fletcher wanted to read In My Heart: A Book of Feelings by Jo Witek first. My sister sent us this book in the beginning of the pandemic and it’s the best for talking about feelings. The last line is “My heart can feel so many feelings, and yours can too. Today, my heart is proud. How does your heart feel?”
“Nervous” Fletcher said immediately.
“Tell me more,” I said.
“I’m nervous about Max’s surgery. And I can’t picture exactly what I’ll be doing after school tomorrow so I’m nervous about that too.” (Cue FaceTiming his grandparents).
Reading this book also allowed me to share why I was feeling nervous. It normalized and validated the uneasy feeling in our tummies. I’d be lying if I said that didn’t help me, too.
Sensory Tools: We use these moments to dig into our sensory toolbox and bring out our old favorites. Weighted blankets, fidgets, deep pressure, squeezes, heavy work, swinging, etc. It always feels good to fall back on the things we know will work. The night before surgery Fletcher requested a heavy blanket and he slept great. We packed a bag full of Max’s favorite sensory tools to have in the hospital as well. Familiarity in object and action are sometime the best way for us to regulate.
We’re hoping that this is the end of surgical procedures for our family for a while but are grateful for what each of our experiences has taught us about the kind of support we all need before and during a major event.
Surgery went great, recovery has been challenging (a whole blogpost in and of itself), but every day gets a little better.