In July 2021, Malachi had a wish granted by Make-A-Wish® Alaska & Washington. His wish was to have a big party with all of his friends and his favorite television character, Abby Cadabby, a fairy puppet, who is Elmo’s best friend on Sesame Street.
The final event was as fabulous as Malachi could have hoped for — especially as it was all brought together in the midst of the COVID-19 pandemic. With help from the folks at Sesame Street, Make-A-Wish rented out an historic theater in downtown Edmonds, Washington, to premier an animated video message, made just for Malachi by Abby Cadabby herself. We invited my parents, along with several of Malachi’s medically-complex friends, who we know from Seattle Children’s Hospital, and their parents and siblings. It was a really wonderful way to bring many of our medical family friends together.
It is a process leading up to the granting of a wish. There is a volunteer point-of-contact you work with to dream up wish options and finalize how it will all look. Our family worked with two volunteers who helped bring Malachi’s wish to life. We are thankful for all of their work. It was a really special day for him.
One day, leading up to Malachi’s Wish Day, I was perusing the Make-A-Wish website and noticed that, on the Staff webpage, each individual included under their picture, name and job title, a short byline with their own wish. Big or small, these were the wishes that staff held for their own lives.
I wish to write a novel.
I wish to have a greenhouse.
I wish to meet Taylor Swift.
It went on and on, and I read each and every one of their wishes.
And, as I did, it hit me: I had stopped wishing.
Somewhere in the middle of the medical trauma and the work of caregiving, I had stopped thinking about the future. I had stopped planning for anything beyond the immediate present. I had surrendered every dream I once held.
Because try as I might, I could not think of a single wish for myself.
My first thought was: “Well, I guess it’s a good thing I don’t work for Make-A-Wish.” Ha! I mean, seriously though, amiright??? How would it look if one of their staff members, whose job it is to help grant the wishes of others, had lost herself in her life situation to such an extent that she no longer could think of a *single* wish?
But then, it struck me just how sad it was....
It was sad not to have a single wish for the future.
That feeling stayed with me. (Clearly, as I am writing about it, now, some 15 months after the fact, the thought really hit home.)
I understood in that moment, that the bubble we had created for ourselves — around our family, around Malachi, to keep him as safe as possible, to manage every emergency in the most stable and familiar environment possible — wasn’t really serving anyone. Because in trying to prevent every possible scary situation, we had manufactured a life that was small and constrained. We did everything we could to feel “safe” and prevent emergencies, and still, the emergencies kept coming.
I realized that our attempt to create this (altogether false) sense of security, really meant sacrificing all of the fun adventures and the type of unpredictability that makes life worth living. We sacrificed all of the spontaneity of life and still failed to save ourselves from the trauma of health emergencies.
Because emergencies happen. No matter what you do to prevent them, sometimes, they just happen. We have no control over much of it. What we do have control of, I realized, is how we choose to live the rest of the time when the emergencies are not happening....
And, at that point in our life, we were living, but we were not alive. We were trudging through each day, but certainly not thriving as a family or as individuals.
And that is simply not who I am, and it is not the perspective of life that I want to pass on to Malachi.
I thrive through exploration. I am my best self when I am out in the world seeing new things, experiencing new things… And that is what I want to pass on to him. I don’t want him to fear the world or ball up into a knot of anxiety at the thought of trying something new. I want Malachi to face the world with courage and wonder. And that requires his parents facing the world with courage and wonder.
That was the day our lives shifted.
Jason and I decided that we needed to dream again. We needed to make wishes for ourselves. We needed to shift our perspective. We needed to truly start living life again — Always prepared for Malachi’s sake, but without the fear that had been holding us back.