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.
Never, in my nastiest nightmares, did I ever think I would have to make the decision to let my child die - let alone twice. But I have: Adelaide was my beautiful ladybug that passed away outside of my body days before her fourth birthday and Elvis was my little gummy bear that I carried inside me for 20 weeks. After Elvis died I felt compelled to advocate for women receiving abortions further into their pregnancy because I truly believe they are misunderstood. As of this week, however, I guess we have to advocate for abortion as a human right in itself.
The last couple of weeks I’ve had a taste of my next new normal. Miguel is in rehearsals for Hamilton, Jackson has been at camp aaand… I’ve been home. This is the normal that I’ve been terrified of, where everyone else’s lives go on and mine stays right where it is. It’s hard to look at the blank slate in front of me and not see the outlines of what has only recently been erased. I know I have this opportunity to make of my time whatever I want - but c’mon how intimidating is that? I can feel the shakes coming on just typing about it. So where does Kelly 4.0 go from here…
Jackson doesn’t go back to school for three more weeks, but everyone’s back to school photos have me feeling alllll my feelings. You see, Adelaide should be starting kindergarten this fall. There will be a lot of these should’s to come. But this one is hitting me surprisingly hard for so many reasons. Not least of which is the stress I know medically-complex families are enduring as they make life or death decisions about how to protect their children in a world that has politicized masks and vaccinations.
Once upon a time there was a cup of syringes on our kitchen counter. It contained every size syringe imaginable: Silver dollar 60mL behemoths down to the pencil-thin 1mL munchkins.
After Adelaide died I took her items scattered across the kitchen counter and placed them in her room.
“Let’s leave the syringes in the cup.” Miguel said.
So I did. Like a bouquet of clear, plastic, flower stems they sat in the cup in the corner of the kitchen. An enduring symbol of a life that was but also an unexpected source of grounding comfort years later.
Saturday night I had the pleasure of attending my brother and his fiancé’s engagement party in our hometown.
Perhaps I should have prepared myself for Adelaide being a frequent topic of conversation but I was so excited to celebrate the engagement that it never even occurred to me. What came next felt like an hours long emotional bomb raid, but when I woke up the next morning I was able to acknowledge that as difficult as the evening had been, these friends and family had given me the most precious gift a grieving parent can receive.
I am writing this post from Texas at my Mother-in-law’s house which sits on a massive piece of land, so far removed that they cannot even see their neighbor’s house. Talk about a fish out of water for this city girl. Throughout our lives we experience natural lifestyle changes: leaving our childhood home, living independently, creating our own family - we move, we learn, we grow. But then there are those lifestyle changes that are so shattering that they become a delineation in time. For me this is Adelaide’s life and subsequent death. There was life with her and there is life now.
