For anyone who suddenly finds their life turned upside down by a diagnosis of an incurable condition like EDS, there is a real and unavoidable and highly individualized grieving process to experience. One aspect of this grieving process is the Year of Firsts – the first year after a traumatic event (like a diagnosis), in which you have to painfully face the first time for, well, everything. The first Christmas, the first birthday, the first day of school, the first family get-together – any first is difficult. Eventually, there are no more painful ‘firsts’ to deal with and life can get back to something resembling normal. For me, the year after our official diagnosis has been a Year of Firsts. Frankly, it has been a really rough year.
As our Year of Firsts winds down, my life is increasingly filled with breathable air and less filled with grief. I no longer feel as if I am wearing my skin inside out, as I have for the past months. I am finally to a point where I can take life one day at a time, rather than only managing one hour or moment or breath at a time. But, still, I am sometimes blindsided by a deep sadness that comes out of [seemingly] nowhere.
I don’t know about you, but I find that certain places or events trigger a fresh round of grief over what has been lost, even after I think I have worked through my grieving process. It took me a long time to figure out what was going on and to honestly recognize my triggers but I eventually got there: it took me even longer to get to a point where I could write about it. Hopefully, facing it will grant me an awareness that will make it easier.
I finally recognized that one of my biggest grief triggers is our local YMCA… Both kids took classes there since they were little – Luke did/does Tae Kwon Do and Emily did gymnastics and ballet; usually their classes were on the same night. For years, we spent every single Tuesday evening at the Y. Em’s big injury happened at the Y – there was no way of knowing at the time that it would be the last time she would walk into the Y as an athlete or that her life would be so utterly changed afterwards.
Luke still does TKD at the Y, although he is now an instructor after earning his black belt. So, I am often back at the Y to drop him off or pick him up – but Em’s absence is a striking void. When I am there, I walk through the halls that I walked so often in happier times, and I am weighed down with sadness that she is not skipping happily off to class or cartwheeling down the hall after class. When I see the gymnastics area and equipment, my heart is painfully squeezed – nothing has changed there, except her absence. When I see the excited preschoolers clad in pink leotards or the laughing, chattering competitive gymnasts, I hurt unbearably and, sometimes, am even angry that my child cannot be with them, that her chance was stolen. I cannot avoid seeing the blue mat where she dislocated her knee, and when I do, I am carried back to that night and cannot help but think of where she is today. Every single time I am at the Y, the wound is reopened – I don’t think I have even healed enough for that wound to scar.
So, now I understand that it is painful to walk into the Y because it makes me remember what we have lost because of EDS. I feel overwhelming sadness at times and I occasionally feel really angry. And, now that I know, I think it will be easier to deal with.
My other grief triggers: healthy, happy children who take their health for granted, casual mommy talk of our children’s futures, various holidays and family get-togethers, and events that my daughter misses out on. Oh, and any and all references to gymnastics. And happy people in general. And babies. The trigger can be big and noteworthy or tiny and inconsequential – and it certainly doesn’t have to be reasonable. I don’t believe ignoring or covering up feelings of grief is helpful, so I try to face it forthrightly with the prayer that I am able to eventually find acceptance and maybe even peace.
What about you? Do you have grief triggers? What are they and how do you deal with them? If you want to share and feel it would be helpful, please do!