What it’s like becoming the point person of a club no mother wants to join
I became someone parents could turn to at both ends of the Rett journey
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My late daughter, Cammy, was diagnosed with Rett syndrome in 2011. After a few months of being connected with the International Rett Syndrome Foundation, participating in the foundation’s Natural History Study, attending a conference, and meeting other families living with Rett, I became a point of contact for newly diagnosed families. I wanted to be the welcoming face of this new “club” that no parent ever wants to join.
Whenever I spoke with a mother of a newly diagnosed child, I was transported back to our family’s own journey: the search for answers, the uncertainty of trying to understand what was happening to our daughter, the moment we finally received a diagnosis, and the overwhelming question, “What do we do now?”
I tried to give these families what I had needed when we were first starting out: support, connections to resources, recommendations, and, perhaps most important, reassurance from someone who had been there.
I wanted them to know that Rett syndrome didn’t have to mean giving up on the life they had imagined for their family. I shared how we had learned to navigate the curveballs Rett threw at us while still trying to live a “normal” life. We traveled. We celebrated birthdays and holidays. We went to restaurants and sporting events. We figured things out as we went.
I wanted parents of newly diagnosed children to see that there could still be joy, adventure, and a beautiful life ahead.
But what I never realized was that after Cammy passed away on Dec. 13, 2023, I would become a different kind of point of contact for a new club. I’d become someone parents could turn to when their child with Rett syndrome was nearing the end of their life.
The memories came rushing back
Several weeks ago, I received a text from a friend whose daughter was in the hospital because of complications from Rett syndrome. Her daughter’s situation was beginning to resemble what Cammy experienced during her final months.
My friend told me that this hospitalization felt different. She wished it didn’t. She wanted to believe it was just another setback, another hurdle they would overcome. But she knew it was different.
My heart sank when I read those words. I knew that feeling, that gut punch, that roller coaster of grief. I was familiar with the quiet knowing that comes from a mother’s intuition — the feeling that something has changed, even before you are ready to acknowledge what it might mean.
She began asking me questions about what to expect and how to prepare for the final weeks and days with her daughter. And I started to cry.
As I answered her questions, I was no longer just talking about what might happen to her daughter. I was reliving Cammy’s final days with us. The memories I had worked so hard to carry while continuing to move forward came rushing back.
My friend needed someone who had been there. Someone who could answer the questions that are almost impossible to ask doctors. Someone who could explain the things you are afraid to say out loud. Someone who could tell her what I wish someone had told me: that even when you think you are prepared, you can never truly prepare your heart for saying goodbye to your child.
As difficult as that conversation was, it made me realize something I had never considered before: I am still a point person.
When Cammy was diagnosed, I became a point person for families at the beginning of their Rett journey. I could help them navigate the diagnosis, find resources, connect with other parents, and understand that their lives could still be filled with happiness. Now, I realize I may also be a point person for the other end of that journey.
Someday, friends whose children have Rett may lean on me when they are facing the final weeks, days, or hours with their child. I never asked for this role. I never wanted to become an expert in either the beginning or the end of a Rett journey. But Cammy taught me that sometimes the most meaningful thing we can offer another parent is simply this: “I have been there. I know. You are not alone.”
Maybe that is what being a point person really means — not having all the answers, but being willing to walk beside someone through the parts of the journey that no parent should ever have to walk alone.
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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