The decisions (some instant, some later) to do right by our daughter

After the moves on organs and cremation, we've taken our time on the services

Jackie Babiarz avatar

by Jackie Babiarz |

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As a parent, some time-sensitive decisions and actions need to be made when your child passes away. Before the death of my daughter, who had Rett syndrome, I knew that certain details needed to happen immediately. Nevertheless, I cannot imagine anyone is ready to deal with them when the time comes. My husband and I felt as if it all came at us at 100 mph.

Here are some of the critical and seemingly impossible actions that needed to be done:

  • Call Harvard Brain Tissue Resource Center immediately to have her brain donated. Thankfully, our doctor told us ahead of time that he’d take care of that concern.
  • Answer immensely sensitive questions from Gift of Hope about other organ donations.
  • Contact the funeral home.
  • Hug, kiss, hold, and say goodbye to our daughter’s physical body one final time.
  • Offer her favorite stuffed animal to be cremated with her.
  • Create an obituary for social media about her death.
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Planning the right service

When my daughter Cammy passed away in December 2023, we were overwhelmed by the time-sensitive decisions that had to be made. We’d already decided that we didn’t want a traditional wake or funeral service.

As my husband, Bill, and I went to the nearest funeral home for all the paperwork and payments, I looked around the room. It was similar, with a familiar funeral home smell, to ones I’d been in many times, grieving those who passed away and comforting their loved ones. But we knew we never wanted to be standing in a line for hours, shaking hands, hugging, and consoling others while grieving the loss of our own child.

While signing paperwork, I whispered to my husband that it wouldn’t feel right to be in the funeral home for Cammy’s service. That’s when a stranger across the desk, who had the intake forms, paid us a high compliment: “We know who your daughter is. We couldn’t host a service [here] even if you wanted us to.”

We wanted to give Cammy the memorial she’d love. We didn’t want the service to be a total grief-stricken environment. But we had no idea what type of venue could hold the numbers we anticipated to come pay their respects and celebrate the incredible life of our girl. We knew Cammy wouldn’t want her friends and family wearing black and sobbing the entire time, with somber music in the background.

Though some decisions had to be made instantly, we took several months to decide on a perfect memorial for Cammy. She’d want the sun shining, people wearing bright colors, and music playing that she loved. On Aug. 25, our family, friends, and supporters will get a chance to remember and celebrate the extraordinary life and legacy of our angel, Cammy, just as she’d want it.

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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