I find myself looking at pictures from a few years ago. The ones that show up on Facebook or on my phone as treasured memories. Most of them bring a smile to my face, and some of them create a fog of melancholy. As I mentioned in a previous post, this time of year can be anxiety inducing simply because it was Christmas Day when Buster had his initial strokes, and his 2018 brain surgery took place a few days after Thanksgiving. It's supposed to be a joyful time of year and I'm still working on actually allowing those happy feelings to creep in more than in prior years. Because this season has been so busy, health-wise, in years past, the memories on my phone keep popping up like little, slightly bothersome glimpses into what could have been.
As soon as I see the picture memory, I can instantly tell whether it was taken "before" or "after" Buster's strokes. I don't even have to look at the date to decipher when in his little life the shot was taken. The pictures of Buster with B or me, "before," are especially cutting. I often think about how I had absolutely no idea what was about to hit me. Buster is giggling at a silly noise I am making, and I am trying my hardest to put on a star performance for him. And yet, in just a few short days, there will be a curtain call for the most dramatic show to date. I wish I could physically jump into the photograph and warn myself of what is to come. But really, would that be the best thing? Wouldn't it be better to allow my ignorance to create the happy memories, frozen in time? I am wistful for those moments when my innocence was still intact. I wouldn't have to wonder how Buster's life would be different now, if he hadn't had his strokes. Thoughts like that are useless because I will never know, and it is meant to be that way. The road is clear in front of me and I need to put one foot in front of the other, no matter what trail lies behind me.
And then there are the "after" images. Seeing some of these is more difficult than others, of course. The pictures of Buster preparing for his brain surgery are hard to look at, but they are also hopeful at the same time because I know there is a positive outcome. And his smiling face, while he plays with Birdie and CJ, creates a warmth within me. Reflecting on all he has accomplished, both physically and emotionally, calms my mind of the endless "what ifs"crowding my thoughts. But the images still make me wonder about Buster's reality. How much of what I see in the "after" pictures is distorted by a mirror of worry? Will I ever be able to live in the present moment, without analyzing how it could all be different?
I've spoken to other parents of children with complex medical needs and I know I am not alone in this thinking. There is both joy and anguish when reliving some of our memories. It's like the proverbial fork in the road---one trail is hardly traveled, which brings with it the unknown and its rapid fire questions about what is on the horizon. And the other is a treacherous, beaten down, barren and overused rut that we've managed to crawl out of already. The choice of which to travel on seems obvious, but for some of us, the strange comfort of grief is intoxicating. We are professional grievers with trophies collected for years. We do sad very well. We know when a soul bashing will bare itself, and we are hardly surprised when tears spontaneously fall at the grocery store or at a soccer game. Reliving some of the most awful moments can help us process a little bit more with each glance back, while questioning what is yet to come can be overwhelming. The potential optimism can be terrifying because we fear the whiplash that comes with a jolt back to reality. Why choke on a breath of hope when we can chew on a familiar piece of despair?
This blog is my attempt to serve small bites of positivity at a time; a starter course of understanding, followed by a larger portion of knowledge and reflection. As this year comes to a close I am pondering my goals for 2022. The biggest, by far, is to reach as many other parents of medically complex kiddos as possible. I want to provide a space for them to learn and to feel seen. Maybe we can all finally swallow our heartbreak, if we break it down a bit.
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