Stall your engines

Me with my grandparents in Michigan, Summer 1984

Me with my grandparents in Michigan, Summer 1984

I’m in my happy place. Since I was a baby I’ve been coming to this exact part of Michigan with my family. I see memories around every tree and dune. Over the years we’ve stayed in several different cottages but the views of the lake and lighthouse, smells of the sand and fresh water and sounds of the breeze through the trees and waves meeting beach are all the same. These last three years it has been incredible to continue making memories here with the family that Miguel and I have created.

Usually, the moment I walk down the cottage-lined path to the beach every worry from regular life falls away. My emotional whiteboard wiped clean. This year has been different. On the drive here Adelaide had a nasty seizure that caused some secretions to get stuck in her throat and we had to pull over to get her breathing again. At home, I could have handled this with all my tools at the ready, but on the side of the highway I just barely kept my panic under the surface as Jackson looked on. Using an ambu bag, (the face mask thing with the big balloon attached to it that you see in ambulances on TV), I was able to get her to cough and clear her airway. Thank you, Nurse A, for always making sure we have that with us. Adelaide was fine after and continued to breathe normally, Jackson seemed unphased as getting Adelaide to breath is not new to him, but Miguel and I were shaken. With my anxiety just below panic levels I wondered if we had made the right decision to come on this trip at all. Miguel reminded me that once we get to the cottage we would have all her equipment on hand and the only reason this time was so scary was because we were in the car. Walking up to the cottage I barely took in the lake, its scent or the sound of the surf. I bee lined it inside the cottage to get Adelaide unpacked and set up.

Sun-bathing Beauty July, 2019

Sun-bathing Beauty July, 2019

Prior to leaving for vacation I had been texting with one of my best friends, who personally battles a chronic illness, about my concerns for our trip. Darkest looming was whether I would be able to enjoy myself. It’s no secret that we have no idea how long we will have with Adelaide. I didn’t want to get into a spot where I was constantly thinking to myself, “remember this moment so you have something to hold on to when she’s gone”. Not only is that line of thinking morbid, it is the antithesis of relaxing, but these are the upsetting places my brain tends to wander these days. She suggested that I just try being in the moment. Let the future go and be present. This may seem like an obvious suggestion to all of you but I have been so focused on just moving forward since Adelaide’s diagnosis entered our lives that just figuratively sitting still was a novel concept to me. Like a shark, I’ve needed to keep moving to survive. Granted, I may not be moving quickly, just an inchstone at a time, but I’ve been pushing forward all the same. 

So, for the next two weeks I am giving myself permission to stall out. I’m not thinking about the next doctor appointment or med change. I’m trying not to analyze her sleep patterns or alertness. I’m sticking to her schedule, cuddling her and giving myself permission to step a few feet away (although, still in ear shot, don’t get crazy now), and read a book. All the concern for her future care is still there. I can feel it in the back of my brain, not-so-patiently waiting to regain its presiding throne over my consciousness. But not yet. 

Engine stalled with my trusty companion while Miguel gives me an Adelaide break July, 2019

Engine stalled with my trusty companion while Miguel gives me an Adelaide break July, 2019

To be completely clear, this does not mean that I am footloose and fancy-free, sipping rosé and playing in the waves. Ok, the rosé part is true, you got me there, but my heart still hurts as I hold her through each day’s seizures and dysautonomia attacks. Unfortunately, chronic illnesses don’t take vacations. But for these two weeks I am giving myself permission to just sit with her through it all. To just be with her in both body AND mind and not pulled weeks and months ahead stressing over the impact each jerk or cry is silently having on her body. Calculating when to call the doctor and what med adjustments are still available to us. Fortunately or unfortunately, I can say with confidence that at this time, there is likely no medical action, that we are aware of, that is going to greatly impact her future. Which means that there is no harm in focusing on keeping her comfortable and just enjoying the moment. Permission granted: engine stalled.