The coping tools that are helping as I grieve my daughter’s passing

How I've been keeping my head above water since Cammy passed away

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by Jackie Babiarz |

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Self-preservation. Boundaries. Circles. Comfort zones.

These are practices I’ve learned during grief therapy. I’ve been implementing these coping tools since my oldest daughter, Cammy, passed away from complications of Rett syndrome last December. She was 14.

After Cammy died, many friends and family encouraged self-preservation. They told me to do whatever I needed to do to survive and take care of my husband, Bill, and our youngest daughter, Ryan. So I did.

I’ve learned to set boundaries. That’ll probably remain a work in progress as I continue my journey of healing. I imagine my boundaries will change over time, for instance. They’ll also vary from person to person and in different environments and situations.

I create boundaries to feel safe; they protect my emotions, time, energy, and overall well-being. They might also protect others who aren’t ready to hear my grief or prevent others from feeling uncomfortable and not knowing how to respond.

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Some circles I figuratively drew were obvious while others surprised me. My inner circle includes Bill, Ryan, my sisters, and a few friends. The day before Cammy passed away, the doctor sat us down to explain the timeline of what would happen. He gave her 24 hours. It ended up more like 15 hours.

He advised that whoever needed to see Cammy should come soon. I contacted my siblings, closest friends, dearest neighbors, and Cammy’s 1-to-1 nurse to come and say their goodbyes. These people had seen the best and worst of Rett syndrome and loved Cammy like their own child.

The next circle includes friends with whom I feel comfortable sharing the details of our last few hours with Cammy. They’re the type of friends who show up on my doorstep with love and support without being asked, somehow knowing what I need.

Another ring is a group of women I unexpectedly opened up to because of their “tell me as much or as little as you want” approach. They listen closely and try to understand while also knowing they cannot fix what I’m going through. This circle also includes Cammy’s team — teachers, aides, therapists, nurses — all of whom knew Cammy on a deeper level than most.

Cammy had an enormous following on social media. Thousands of people followed her journey since she was diagnosed in 2011. Although we shared most of her life for over a dozen years, my social media circle has become more of an orbital ring.

My comfort zone includes people who truly know me, but it also extends to people who have no idea who I am or who Cammy was. I want to fly under the radar. I always have an exit strategy so that I can leave a situation whenever I start to feel overwhelmed. I need everyone to understand and accept that.

I’m very conscious of my comfort zones. Before deciding to enter an environment, situation, or social gathering, I assess the potential grief triggers. For the first couple months after Cammy passed, for example, I knew I couldn’t be around other Rett families, as I would sob the entire time. I don’t want to be in a situation where someone doesn’t understand my boundaries regarding talking about Cammy and grief.

These coping tools have helped me keep my head above water over the past six months. They’ve helped me reenter the world and continue to live life, even when I didn’t think I could do so without Cammy.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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