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

As a parent, certain time-sensitive decisions and actions must be taken when your child passes away. Before the death of my daughter, who had Rett syndrome, I knew certain details needed to be done immediately. Still, I can’t imagine anyone being ready to deal with them when the time comes. My husband and I felt like everything was coming at us at 100 mph.

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

  • Call Harvard Brain Tissue Resource Center immediately to have his brain donated. Thankfully, our doctor told us ahead of time that he would take care of that problem.
  • Answer extremely sensitive questions from The gift of hope about other organ donations.
  • Contact the funeral home.
  • Hug, kiss, hold and say goodbye to our daughter’s physical body one last time.
  • Offer her favorite stuffed animal to be cremated with her.
  • Create an social media obituary 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 needed to be made. We had already decided that we did not 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 resembled, with a familiar smell of funeral homes, the ones I have been in many times, mourning the departed and comforting their loved ones. But we knew we never wanted to stand in line for hours, shaking hands, hugging and comforting others while grieving the loss of our own child.

While I was signing paperwork, I whispered to my husband that it wouldn’t feel right to be at the funeral home for Cammy’s service. It was then that a stranger across the desk, who had the admission forms, paid us a big compliment: “We know who your daughter is. We could not host a service (here) even if you wanted us to.”

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

Although some decisions had to be made immediately, it took us several months to decide on a perfect memorial for Cammy. She would like the sun to shine, for people to wear bright colors and to play music that she loved. On August 25th, our family, friends and supporters will have a chance to remember and celebrate the extraordinary life and legacy of our angel, Cammy, just as she would have it.


Note: Rett Syndrome News is a news and information website about the disorder. It does not provide medical advice, diagnosis or treatment. This content is not intended as a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare 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 stimulate discussion on issues related to Rett Syndrome.

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