A new normal
One month without lick-kisses July 2019
One month. One month without holding her, without nurses and therapists going in an out of our home, without delivering meds five times a day, without waking up in the middle of the night to suction her or rock her after a seizure. Yesterday, the medical device company came to pick up all of her equipment that had taken up so much space in her room and had filled our home with constant electronic whirs and beeps.
As I laid in Adelaide’s bed this week, recording the sound of her oxygen concentrator so I could always hear it even after the technician took it away, I remembered that a friend had told me that grief was weird. Gosh, is it ever. Here is a machine that I loathed: big, bulky, noisy and Adelaide had been tethered to it for the better part of the last year. But now, I could think of no more comforting a sound than the bubbling of the water, puffing of air, buzz of the motor and rattle of the plastic where the casing was starting to come apart. Like a white noise machine, I fell asleep to it every night this week. What helps you sleep? Melatonin? Chamomile tea? A nice warm bath? Nope, the sweet sweet sounds of a worse for wear oxygen concentrator. Weird, man, just weird.
The infamous oxygen concentrator in the background… always with her August 2019
The last four weeks have been a blur: first we sat in the shock of it all, then family and friends descended upon us in love and support for the service and aftermath. Before I knew it I was on a plane to Las Vegas for the WEGO Health Awards, onto Scottsdale to visit with friends, home for Halloween then back to the airport for Epilepsy Awareness Day at Disneyland. The visitors and travels had been a distraction but it couldn’t last forever and it didn’t. Friday morning I woke up in my own bed, in my own quiet house and it hit me, like a freight train, it hit me. There were no doctor or therapy appointments on the schedule. No nurse knocking on our door. No prescriptions that needed refilling. No Adelaide to take care of. Don’t get me wrong, I had been grieving her and missing her but I had somehow been able to put off the debilitating reality of my new normal.
I’m not sure what this new normal looks like and I recognize that I don’t need to yet. Right now I’m trying to survive the month of November: epilepsy awareness month, CURE’s big annual benefit on Monday night (at which I am somehow going to speak), and our My Shot at Epilepsy raffle to benefit CURE. In previous years, I would have loaded on the PR trying to snag every interview opportunity, every microphone or video camera I could find to share our story and our mission. It’s been hard to assuage my guilt for not advocating harder during this month but, again, my rational brain knows that’s ridiculous and so I crawl back into bed mustering up a social media post when I can. After pushing through the next two weeks I am giving myself permission to take December off from public life and advocacy, to just be present with my family, and to try to navigate my own personal inchstones.
My lighthouse and my North Star May 2019
If Jackson is my lighthouse leading me to safe harbor, then for the last nearly four years, Adelaide had been my North Star: A fixed point to which we set course affecting every decision made in every aspect of our life. In my deepest despair, I have felt lost without her light to give me purpose and show me the way. But in writing this post and thinking of whats next I realize that her light has not gone out. True, her presence no longer sets my schedule, but her life and memory will still show me what is most important. Her legacy will continue to guide me, just not with the same routine and structure. I’ll have to look within for that now - when I’m ready. Like in January, maybe. Right now, though, I’m going to listen to the audio recording of her oxygen concentrator because that’s what feels right. So weird and so right.
