Years ago, when I first began speaking with researchers, I would catch the sparkle in their eye when they heard about Adelaide’s medical mysteries. Internally I wanted to scream at them, “how dare you find her suffering intriguing! How dare you draw ambition from our desperation!” But over time I’ve grown to appreciate the symbiotic relationship we as patients and caregivers have with researchers. We are their sparkle and they are our hope.
With epilepsy awareness month coming to a close and infantile spasms awareness week upon us I’ve been thinking a lot about my advocacy. Specifically about the nagging guilt I’ve felt for not posting as much about epilepsy awareness as I typically would this time of year. Am I failing this community by not Tik-Toking and Insta-reeling with the best of them? Then, as if he could sense my musings from 3,000 miles away, Bud aka Emma’s dad, sent me a piece of his writing that cleared the muddled lines like a doctor decoding an EEG.
Confession time: I’m a little nervous about parenting a young neurotypical child. Yes, I did it already with Jackson, but then I was working full time and felt relieved when Monday rolled around because, heck yes I loved him, but wow, 24/7 parenting is hard. With Adelaide I grew comfortable in my medical mama status which is an entirely different kind of parenting. So, now I’m preparing to wipe away the rust and grease up for neurotypical parenting round 2.
As we push forward on our adoption journey, I’ve continuously battled the thought that our adopted child will in some way be replacing Adelaide. Rationally, I know this isn’t true - how could they?! But, the truth is, we probably wouldn’t be adopting if Adelaide were alive and healthy. Then, after months of wrestling with this heartache, I finally came to a realization this week that brought me infinite peace.
So, I have a bad habit of doing this thing where I fill the gaping holes in my emotional well-being with activities and people. Perhaps if I just stay busy enough then I won’t have to feel things, but it always, ALWAYS catches up to me. It’s as if I’m driving down an interstate going nowhere fast and bugs keep hitting my windshield, until at some point my windshield is so full of bug guts that I can’t see the road anymore and I have to pull over and clean my disgusting windshield. I wish I could say I chose to pull over, but lets be real, when its gets that bad it’s really just about self-preservation.
“You may come inside and go downstairs.”
I read the text three times. Go downstairs. But that was where the ultrasounds took place and I wasn’t getting an ultrasound. Had they remodeled? Were the ultrasounds moved? Did they know something about my body that I didn’t? In the inspired words of Gilda Radner’s Roseanne Roseannadanna, “It’s always something. If it’s not one thing, it’s another.” Or, apparently, some weeks or days, it’s alllll the things.
Like any doting parent I worry about my child. I want him to have friends, to be nurtured and challenged. I want him to be kind, confident and curious. I want him to be happy. These desires are more challenging to achieve though when your child is exposed to life’s uglier truths long before you or they are ready. When that thin bubble is burst no amount of parental protection can recreate it, but all hope is not lost - the kids will be alright.
Next Tuesday, October 12th, will be two years without Adelaide. Even though I’ve lived this anniversary once before, and keep reminding myself that the anticipation of the day is far worse than the day itself, it still sucks harder than a freshly cleaned Hoover. I will never make a new memory with her and those I have are already beginning to fade or become surreal fairy tale versions of a prior lifetime. So when I learned something new about her this week I felt like I had been given the best gift in the world: new memories a peak into the secret life of Adelaide Grace.
7:30 a.m.
Cut the pill with the pill cutter.
Crush the pill with the pill crusher.
Our routine was overwhelmingly foreign to most but familiar to me. Like an ancient map written in a language only I could translate. It was not one I ever would have chosen, but I couldn’t choose to deny it either.
Oh hey, social anxiety, there you are - It’s been a minute since, you know, I haven’t been social for the last 18 months… My anxiety kicked up twelve notches when Adelaide was first diagnosed and I would have to explain her conditions to people. Then, after she died, it was the dreaded “how many children do you have?”. Now, however, the question that has me sweating through my deodorant is “what are you up to these days?”. But this week I had a bit of a breakthrough and it was perhaps the most relief I’ve felt in ages.
My friend, Bud AKA Emma’s Dad, saved me this week by sending a blog post I’d asked him to write and holy crap - I don’t think I have ever read the medically complex parenting journey spelled out so clearly or so beautifully. Seriously, this post is poetic. It is my absolute honor to introduce you to Star Dadvocate, Bud, and his journey toward acceptance.
When I was growing up my mom used to make iced tea in a big plastic pitcher with a spigot. She would fill it up and set it out on the back deck to brew in the sun and, in the heat of the summer, it would be empty by dinner the following evening. This week I realized that we are all an awful lot like that iced tea dispenser and it is really freaking hot outside.
