As the dumpster fire that is 2020 barrels on, tropical storm Isaias took out our power on Tuesday… and we were told not to expect it back before Sunday. The first 24 hours I tried to put on a good face for Jackson, “Mommy and Daddy didn’t have internet when they were kids, there is plenty to do!” But you know what we did have? Air conditioning and fans. There are few things less motivating than sitting in a pile of your own sweat, during a pandemic with no where to go, and with power out across your entire town and three towns over. When I realized that the power had been temporarily cut at both of our walkable liquor stores I lost it.

Now, I try and put this in perspective - we’re healthy, we’re safe, we’re not at risk of heat stroke. Yes, this not having power in August is uncomfortable and annoying but this too shall pass. This too shall pass: a phrase I’ve been repeating to myself ad nauseam. Thankfully, it did pass and the power returned last night. I imagine that elated squeals of joy could be heard for miles. However, I’m still left unsettled as recently it feels as if every time one trial has passed a new one replaces it. And, unfortunately, any progress I’ve been making with my grief takes a step back with it. Two steps forward, one step back. One step forward, two steps back. It’s a dance I am all too familiar with but had not experienced in the first person. It took emotionally vomiting to a dear friend also living a rare disease/medically complex/grief-filled life to see it.

“It’s your dance now”

With each setback I’ve felt like I’m suspended and flailing in space, unsure which direction to go or even which way was up. But this concept of my dance brought me bizarre comfort. It’s familiar. I developed the strength and skills necessary to navigate this choreography with Adelaide. The obvious difference being that she was leading the way because it was all happening to her. Oh, yeah, and we had each other. The conditions are different, but as my friend reminded me, I still have it in me.

By the time infantile spasms reared its ugly head for the second time, I realized there was not going to be a straight path forward. I accepted the dance - I hated it - but I accepted it. With each failed med, each hospital admission, each test with inconclusive results we took our steps back and then pushed forward. I was fighting for my child’s life, there was no other choice than to push forward. By framing my grief as a similar dance, but one where I’m leading the way, one where I’m fighting for my own future, I’ve been able to wrap my head around this process. 

Though, I have to admit Adelaide’s dance seemed much stronger and more graceful than my own clumsy, half-hearted, deranged chicken-like interpretation. But then, the more I think about it, Adelaide and I were pretty clumsy in the beginning too. To this day there is a specific popping sound that sends shivers down my spine after accidentally dislodging Adelaide’s g-tube, not once, but twice, within the first six months of it being placed. 

It’s time to accept my dance and that there is no clear path to healing. Yes, the moving truck finally came and the power did come back on, but there will always be something else that sets me back a few steps. Not to get all philosophical on you, but that’s life I suppose. Living that rare disease/medically complex/grief-filled life just amplifies it all. We feel each step, forward or back, so much more intensely because we fought so hard to achieve it. 

So, I’m dancing. It’s not pretty but I’m trying. I’m accepting this journey and that there will be many more steps back than I would like but there will also be steps forward. Hopefully, in time, I will get stronger and more graceful. Until then, I guess I’ll chicken dance.