One thing about having lived with medical crap half your life is that you kind of know at what point to start freaking out when your child is having a medical intervention. Or at least you think you do.
As I held his hands, I watched Smacky be put under for the MRI – his last words were “I think we should go home!” – as his head flopped down I kissed him and slowly walked away from the stretcher to head out to grab an iced decaf and have a seat in the waiting room while the machine made pictures of his brain. As I smiled at the sweet people who were really taking amazing care of him, I saw Smacky’s thick, long eyelashes begin to flutter and immediately felt a surge of unadulterated panic. HE’S WAKING UP!!! I pointed, gesturing wildly toward him. I SEE HIM WAKING UP! YOU NEED TO MAKE SURE HE’S ASLEEP OR —
The sweet people kindly, without detectable condescension, began assuring me he’s okay – that it’s normal for people who are under to move around a bit. As they explained I was really only half-listening as I realized DUH – he’s not getting cut open – it’s not like he’ll wake up and feel pain LIKE I DID WHEN I WOKE UP EARLY FROM HIS GENERAL ANESTHESIA C-SECTION BIRTH. Holy spontaneous PTSD episode! My heart was pounding and the dizziness set in. I quickly stumbled out into the main hallway and leaned against the wall and practiced my calming breathing.
I did it though. I soothed myself nicely and proceeded to the cafe and bought some sugary treats because, you know, nothing calms frayed nerves like a glazed donut.
About an hour later, when he woke up, he smiled at me. He checked and happily noticed his IV line was now out. He didn’t seem to remember a thing about the MRI and immediately began asking to go back to the amazing playroom on the 8th floor where we had earlier spent most of our pre-procedure wait time.
Overall, he did great. Me? Maybe just okay.
Two days later, we get a message from a neurology fellow:
Hello, Mrs. C, this is Dr. Heavy Accent from the neurology department. The results of Smacky’s MRI are, well, ESSENTIALLY normal.
S and I listen to it twice. What the F*CK does ESSENTIALLY normal mean? Normal for kids with CP or normal as in, normal?
We call back. Said fellow is not in, and the neurologist is away at an international neurology conference. Best we wait for 2 more days for him to return the call, we’re told.
So 5 days later (thankfully, most of those were spent at the lake), we confirm that yes, he indeed has spastic diplegic cerebral palsy but what’s really, really good is that his brain suffered no “structural” damage. Nothing more serious or degenerative or surprising seems to be going on and this is the best case scenario for his situation. Our next steps? Turn from the medical to the educational, and give him therapy, therapy, and more therapy. I must admit it feels good to know that we’ve already been doing that and then some. It also feels good, for his sake, to know his overall situation is relatively mild.
Smacky started kindergarten this week and surprised me by basically blowing me off and heading into the classroom without saying goodbye. My baby was a natural – independent and, though cautious and a little somber, ready to take on his new situation on his own. What a relief.
Today at PT he fell many times, including a big wipeout while navigating the balance beam. He shed some tears after that one, but he got up and kept trying, urging me to watch, Mom, watch! When his session was over he ran around the therapy room throwing balls and falling into things. At one point he fell right into my lap.
“Mom?” he asked, smiling. “Can I play basketball this year?”
You betcha, baby.
I sometimes forget he’s half me. Apparently we’re going to be handling CP just like we handle PNH – with lots of quiet (and sometimes not-so-quiet) rebellion. Some days you just have to pretend it’s not there and keep going. Some days you have to act like you’re healthy and “normal” and plan your future as such. And on the bad days, ask for hugs and ice cream and serious couch time.
I think that will work for all of us.
Thank you all, so much, for your support. We’re all gonna be just fine over here.
For now :-).