After seeing a new musical in LA about a family struggling with their daughter’s epilepsy I came home reanalyzing the affect Adelaide’s life, and now Anessa’s, has on Jackson. Once a medically-complex/disability sibling always a medically-complex/disability sibling. But just because the wheel isn’t squeaky doesn’t mean it isn’t also in need of some extra TLC.
“What if we bought a house in the country and homeschooled the kids?” I thought out loud in my husband’s direction. Miguel, ever-patient listened as I played out my daydream before I came to the obvious conclusion that I would be miserable after two weeks. Still, life suddenly felt too fast – I was capable of keeping up, but for the first time in a long time I didn’t want to.
We made coffee and packed lunches like always. I showered and got dressed like always. We got everyone out the door and off to school like always. The actions were routine, the scents and sounds familiar, but inside I felt anything but. No, that’s not true – I knew this feeling all too well, it was grief and it hurt.
The election coverage is giving me serious anxiety and given how long it could take to determine the results, I get the impression it isn’t going anywhere anytime soon. Feeling like I have little control over the future is not a new feeling for me. So, I suppose it shouldn’t have come as a surprise that I resorted to a few time-tested tactics.
Earlier this week, I gave a virtual keynote on our family’s journey and various themes from my book, Normal Broken. During the Q&A, an attendee mentioned she had been reading my blog, but until this talk hadn’t known what the name of my blog, Inchstones, referred to. So, this week, I’m taking it back to March 22nd, 2019, and resharing a blog about what the concept of inchstones means to me.
By now I should know that these anniversaries never go the way I want them to. After all, at their core, they are blatant reminders of how little control I have over my own life. But when it comes to grief, there is just no way to know which memory, realization, or well-meaning comment is going to sucker punch you and leave you gasping for air.
Well, the five-day period that begins with Adelaide’s deathaversary and ends with her birthday – aka hell week - is upon us… for the fifth time. I won’t pretend that it feels like yesterday, because it doesn’t. That high-stakes, medical life feels like an old pair of my favorite jeans that no longer fit the way they used to. The love, comfort, and memories are still there, but they are from another era.
As caregivers we spend so much time resisting the idea that our loved one is a burden. We love them, we want to care for them, they deserved to be cared for, and if we don’t do it who else will? In a world that measures human value in physical or financial productivity, the last thing we want to do is show the toll their health takes on us as well.
I know we are never healed, and that we will always grieve our lost loves. I’ve written those words here, in my book Normal Broken, and say them in nearly every speech I give. I could accept grieving Adelaide forever because I will love her forever. Grief = Love. What I didn’t understand is that the trauma of her life would be with me forever as well.
Strength, or our perception of it, is a theme I have come back to time and again in my writing. For a long time, I didn’t think I deserved to be considered strong because it wasn’t something I chose. Though I eventually accepted that there is always a choice, even when the alternatives seem unfathomable. So why, if I am now able to own my strength, am I still struggling to define it?
I want you to always remember who you are. It is so easy to forget, to feel the need to be like someone else. We mold and contort to socially survive and then one day we wake up an adult and try to remember who we were before the world colored inside our lines. I hope that someday these words may help you find your way back to your five-year-old self when you need her most.
Last year I shared that we found Adelaide’s true diagnosis. Now, additional findings, which Adelaide's tissue and data were a part of, have been published. Learning her diagnosis felt anti-climactic, but this study, even the little bit that I understand, has brought me peace I hadn't imagined.
