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.
Last week, after four years away, we returned to Lake Michigan for a vacation. I was excited to introduce Anessa to my favorite place on Earth, but also prepared for the complicated emotions I anticipated would arise. Grief doesn't follow traditional rules though, and I never could have predicted what would happen.
I hadn’t planned on visiting Miguel in Poughkeepsie where he was working on a workshop of a new musical. I blamed the logistics of traveling with Anessa, but the subject of the musical was also daunting. “The Heart” follows the literal heart of a young man following his death in a car accident into a donor recipient. Miguel was playing the father of the young man who died.
So much of the contention I see in the country right now feels like the product of grief. Not grief as in the loss of a person, but grief as in the loss of an idealized future. Grief as a resistance to the societal changes that are occurring at a faster rate than ever before. And the anger that can surface when we our grief is left unchecked and unseen.
When I first read on Sunday, that Joe Biden was stepping aside like many I felt hopeful. When it became clear that Kamala Harris would be stepping up, the injection of energy, unity, and determination was intoxicating. I’ve enjoyed letting excitement take over because hope feels good. But as I became more hopeful, as I allowed myself to envision a Harris presidency, I felt a surge of anxiety bordering on panic.
This past weekend I had the privilege of speaking at The Compassionate Friends conference. Between my talk and countless conversations, I was thrust back into those early days of my grief. I am proud of myself for how far I’ve come. And I’ll preface my next thought by saying I would rather go back to middle school than be forced to relive those two years. However, they held a hidden beauty. The kind of beauty you can only see in reflection.
I was 27 when we got married, Miguel was 32. In working on the next book, I’ve been spending a lot of time thinking about my 20’s. Reading old journals (so embarrassing) and looking through scrapbooks (good lord I had a lot of free time). I’ve been trying to piece together who I was, what was important to me, and the ways I’ve grown or changed.
