It’s been four years to the day that I sat with my husband and our parents waiting for our youngest son to come out of surgery for a brain tumor. It was a very long day, a grueling surgery, and the launching point for a new life we never knew was coming. I usually post the blog from two years ago when I reflect on what this anniversary means, but this year I’m writing from a different position.
I mean that literally.
This year, as the anniversary of that surgery popped onto my newsfeed memories like a happy cheerleader (“We thought you’d like to look back on these memories today, Adina!”) I was in the emergency room with that same child, waiting for him to return from a CT scan, hoping that the pain he was in was just some random incident and not further progression of this recurrent disease that has shadowed most of our days for four years.
It was an ironic moment. The doctors wheeled him out of our cheerfully decorated little ER room, and smiling, told us they’d be right back, sure he’ll be fine. It took me back to when we were handed a similar narrative that never played out the way it was supposed to. Back then, I thought we were dealing with a sprint – a short moment that would end with a happily ever after and a quick blog post about blessings and family. But I’m a bit jaded now, and so their words of comfort filled me with a sense of dread instead of relief.
I glanced at my phone and watched as the date changed from May 6th to May 7th and realized, it’s four years later and I am waiting in a hospital. Again.
Once we knew we were going to the ER, I packed a quick bag, taking my laptop and chargers, a fuzzy blanket, and changes of clothes for everyone. It was easy to pack, having done it numerous times in the past. You know you’ve reached a bizarre moment in your life when you can walk through an emergency room and request a bay that you know is “better” than another.
“Can we get the Panther room? We like that one.”
So I sat there with my laptop, working on – of all things – Bar Mitzvah invitations for the kid in the CT scanner. My husband sat next to me, saw what I was doing, and after an awkward moment of silence, both of us just started laughing. It was probably a combination of stress and scanxiety. The ridiculousness that we are still dealing with hospitals and doctors and the realization that we have no idea what the next five minutes will bring, much less the next few years. The absurdity of planning a celebration while waiting for what could be bad news.
I wax poetic about medicine these days. Having moved from the world of the 24 hour virus, to the 10 day course of antibiotics, to the unending and nebulous realm of brain tumors and treatments, I recently made peace with what will be a long term situation. Gone are the days where we plan for the summer “when everything is finished” or for the party that will be a “celebration of everything turning out great!” Our reality shifted somewhere along the line and put us in a place where we can wait for CT results while planning a party that we are both hesitant to entertain. We can’t wait for the perfect summer, the perfect date, the perfect moment when these past four years will be a blip on the screen. The past four years have become the screen and we get that it is our responsibility to meld it into our reality instead of bemoaning its presence. It is part of what they keep telling us is our new normal, an aspect of life that demands we still live despite the ever-present shadows.
It’s why, four years after that gun went off, I sit in an emergency room at 1:00 AM and fix invitation designs and think about centerpieces at the same time my son returns from a scan and gets pain medication and drugs to help him sleep pushed into his IV. It’s what we have to do. It’s what we always do.
Four years out and it’s taken me this long to understand the difference between a marathon and a sprint.
Categories: Insanity, Kids, Uncategorized
good stuff as usual though it sucks to have the muse be binnys condition
Adina I’m so non bs and don’t go for the “blessed “ or “blessing “ kind of thing The irony of planning centerpieces is crystal clear Sending love / DSB
Deena S Borzak
My little buddy… breaks my heart that my friend is going thru this once again… makes me realize that my “big” problems are nothing…. I continue to pray for you guys and wish that this would just go away once and for all and that Binny could “come out and play”…. miss you guys
Love and prayers
May he have a speedy recovery. Refuah shelayma. We are praying for him
I am praying for Binny, the boy who stolen my heart and who decided to call me “abuelita”. For the entire family too who has to keep going forward and deal with so much. Refuah Shlema for Benjamin Ben Adina, my blessings to all of you. Speedy recovery my special grandson.
Thinking of you, Adina, and your family and especially Binny. Love, hope and prayers. Binny is blessed to have you for a mother.