Do you remember those commercials several years ago that showed two images and claimed: “This is your brain…” and, “This is your brain on drugs?” Well, I think maybe we could draw a similar comparison in another category called: “This is your brain…” and, “This is your brain now that you have a seriously ill child.” Yes, the two images would appear quite different, I’m sure. I haven’t actually seen my brain since having a child diagnosed with cancer, but I’ve certainly missed some of the activity that used to go on up there.
You know what I mean… trauma affects people. It affects us physically, emotionally, spiritually and intellectually. And since I aim to be brief here, I’m going to focus only on the intellectual component right now. I wouldn’t want to think too hard anyway and stress the brain cells I have left…
You see, five years ago our toddler son was diagnosed with cancer. My world completely changed. My routine, my hopes, my thoughts and my goals were all stuffed into an imaginary blender somewhere and turned on high speed. Everything was whirled around and plopped into my lap and was declared my “new normal.” And I accepted the challenge. When your child is fighting for their life, you don’t even think twice before engaging in the fight with them. I wished I could take the cancer from our son, but I couldn’t, so I did everything I could to help him through his long course of chemotherapy treatments.
But it was during those months of fighting and focusing on our son that my brain seemed to turn into scrambled eggs. And if you have, or have had, a child with a serious illness you can probably relate. I’m going to call it Parental Brain Delay or PBD for short. I was going to call it PFASIWTCATLBF for “Parents Fighting A Serious Illness with Their Child and Therefore Losing Brain Function”… but I thought that might be a bit much to remember, so let’s just go with PBD. Anyway, I use the word “delay” because I really believe the information is still up there… it just takes a little longer to get anywhere.
During the hardest months of my son’s treatment my brain felt like an empty waiting room. Clarity and discernment had not checked in at the front desk! I tried to remember certain events or moments that had occurred in the weeks before my son’s diagnosis, but they were fuzzy. Instead I’d hear medical terms and the names of cancer drugs echoing in my head “Intrathecal Methotrexate… Intrathecal Methotrexate.” Seriously, I did.
One night I literally begged my husband to play Trivial Pursuit with me just so I could utilize and exercise my brain. I could feel it turning to mush. And yes, we played Trivial Pursuit… and then I felt even dumber. Bad idea.
Another time while at Riley Children’s Hospital in Indianapolis, where we did a lot of the most difficult treatments, I spoke even though my brain delay was in full-swing. You see there is a monorail train that runs from building to building on the medical campus where Riley is located. This train is officially called the Indiana University Health People Mover. Very nice. However, our son loves the Thomas the Tank Engine train characters and there is one train in particular that is long and sleek and grey- sort of like the People Mover. This train’s name is Spencer. And so, as you can gather, our family affectionately called the People Mover “Spencer.”
And, to help our son keep a positive perspective on trips to Riley Hospital, we did all we could to make the day special and fun for him instead of solely focused on blood draws, spinal taps and chemo. So, every time we went to Riley (and it was many times!) we rode that People Mover after his appointment. Back and forth, back and forth, just for fun!
Well, back to my brain delay… one day a nurse asked me what we were going to do after our chemo appointment was finished and I told her proudly and with a smile that we were going to ride on Spencer. She smiled back sweetly and then wondered aloud who Spencer was. I felt pretty silly. If my brain would only have caught up to my mouth to remind me that not everyone knew the monorail as Spencer it would have been helpful. I felt almost as silly as the time I told a nurse that we’d help our son lay flat for “two Georges” until his spinal chemotherapy could work it’s way up and down his spine. To me, the fact that we told time at that point by Curious George episodes (which last about 15 minutes each and were much easier to relate as a span of time to our child) slipped my mind. So by telling the nurse that we’d help for “two Georges” instead of a half-hour earned me another sweet smile and blank stare.
And what about the time I was filling out one of the countless “medical forms” while at the hospital. Instead of writing my husband’s first name in the blank where it asked for our son’s father’s name I wrote “Daddy” instead. Yeah… oops. They needed me to be a bit more specific.
I know the nurses get a good laugh out of us parents suffering from PBD. They probably keep a notebook of our silly questions and faux pas in the break room, but they are sweet about it nonetheless.
So to sum up: when you are a parent of a child fighting a serious illness your brain cells are also fighting confusion and delay. But wait! The good news is two-fold!
First, you’re not alone! Come on, don’t even pretend like I’m the only one who has suffered from PBD… that’s right, own up to it, it will make you feel better!
And the second bit of good news is that brain function does seem to return. Now that I’m five years out from my son’s diagnosis I’m starting to feel those IV pumps in my brain pushing fluids again. There’s hope for you too!
Now wait… what was I talking about?
Christy Cabe 