"Suffering the Slings and Arrows of Outrageous Fortune"

Grief Triggers

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!

The Stages of Grief


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Comments on: "Grief Triggers" (4)

  1. Oh there are still so many for me even 5 years out. However, they do become less overwhelming. The anger has definitely subsided. Now it is I feel blessed because I know that it could be a great deal worse. Thank you again for such an insightful post.

    • These days I mostly feel blessed, but every once in a while the grief or anger hits anew. I know the one year mark doesn’t mean my grieving will end, but I am looking forward to the sadness having a chance to ease. I think the fact that Em got so ill, so quickly and we had little hope that anything could help her, compounded my grief. So, I wasn’t just grieving, I saw her end up in a wheelchair and be quickly devastated by neurological symptoms. It was terrifying and that made the whole grieving process much more complex. Now that she is better and we have a handle on the cause of the symptoms, I am much more composed. Most of the time! 😉

  2. Your post brought a great deal back. Our now 8 year old was 4 going on 5 I think and he was the one that couldn’t walk without pain. I thought for sure he was going to end up in a wheelchair. Alex was really into sports and has had to give up basketball which was his favorite due to his retroflexed odotnoid. The hospital stays with Victoria where no one could explain what was wrong and why she was so sick. Friends who go on about how hard their lives are but their children are healthy and can walk out the door and not have to think about whether they can or cannot do something. Some days all it takes is seeing them struggle to cause my heart to break. I guess I still do have a great deal held inside.

    • Honestly, it brought a lot up for me too as I was writing. I found myself tearing up repeatedly as I wrote – this one was quite painful to sit down and write. But, I have never spoken about it to anyone – even my family – and I felt like it was a huge weight I have silently carried around for a couple years. I was finally ready to try to lay the burden down. I think it will be easier now that I opened up about it – I hope so anyway! I am so sorry that you share the pain of this journey, but it is nice to know that we are not alone, that others really do understand!

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