All tagged Grief
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.
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.
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.
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.
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.
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.
It was Saturday afternoon, I needed to make a return at the mall and Anessa had been begging to “go to a shop”. I wasn’t sure how this adventure would play out: it could be a delightful afternoon or a tantrum-laden nightmare. Anessa was getting better at managing disappointment as evidenced by our last few uneventful grocery store trips. So, I decided to take a chance.
I unlock my phone to hand to Anessa and a picture of Jackson and Adelaide cuddling on our couch in Chicago stares back at me from a widget/app/thing that displays a randomly rotated photo. They are both in their pj’s and Jackson has his arms around her in a possessive cuddle as he watches TV. This image, which had been so mundane, so routine to me just half a decade ago, was now relegated to my memories.
During a text check-in with a fellow Dead Kids Club member this past weekend, our conversation turned to how no one tells you just how challenging life can get. She noted that sadly, she learned that as a child, but she had a similar conversation with another DKC member whose life was uneventful until the passing of her son. It had been incredibly jarring for her to find out as a 40+-year-old that life does not always go as planned.
