The last 24 hours with my oldest daughter, who had Rett syndrome

On Dec. 13, it’ll be one year since our oldest daughter, Cammy, passed away from complications of Rett syndrome. In some ways, I can’t believe it’s been a full year; in other ways, it’s seemed like the longest year of my life.

Over the past week, I’ve cried myself to sleep. Every time I close my eyes, the final evening of Cammy’s life runs through my head. Around 4 p.m. on Dec. 12, 2023, Cammy’s doctor asked to speak privately with me and my husband, Billy. I knew what it was before he even teared up or spoke: Cammy was going to die.

Her diminished lungs couldn’t exhale carbon dioxide anymore. The doctor urged us to contact anyone who needed to say goodbye. My husband said, “There’s only one person I need to call: my dad.”

I ran to the bathroom, vomited while sobbing, then called my sister Kristin. My siblings had known Cammy’s passing was coming for two years and had a plan in place. Kristin asked if I needed anything. “The tissue here is like paper,” I replied. “Can you bring me some good Kleenex?”

Kristin contacted the rest of my siblings, who set out immediately for the hospital.

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My next call was to Molly, one of Cammy’s fairy godmothers, who had a chain of people to contact. All of them were supposed to come in the morning to say goodbye. Next I called our dearest neighbors. Beth left work to say goodbye for her family, as all of the others were out of state.

I called Cammy’s 1:1 nurse, who came immediately. I called Cammy’s teacher to let her school team know it’d be less than 24 hours. Finally, I called our younger daughter’s assistant principal, who’s a friend, to prepare her school for what was happening.

I was alone in the room with Cammy, watching her rest peacefully after the doctor had given her a sedative to calm down her breathing. A nurse came in and asked if I’d like her to use an instrument to amplify Cammy’s heartbeat, so I could record it on my phone. I nodded and hugged her tightly.

Then there was a knock on the door. My six siblings were lined up, each handing me a box of Kleenex and a gigantic hug as they entered. A familiar feeling came over me: the six of us had sat around my mom just five years before, the night before she passed away.

Billy arrived with our younger daughter, Ryan, for our final night as a family of four.

The final night

Ryan curled up at Cammy’s feet and never left her. Billy tried to sleep in the recliner while machines beeped all night, the BiPAP machine pumped oxygen in and out of our child, and nurses continued to monitor her. I paced the halls for what seemed like hours.

Around 4 a.m., a nurse found me to tell me I needed to go to Cammy’s room. Ryan and Billy were by her side, holding her hands. The sedative had worn off. Her heart looked as if it were literally beating out of her chest. She needed morphine to calm down. It was time for the rest of the family and friends to say goodbye. They hurried to do that and be with us.

We played Cammy’s favorite music, Andrea Bocelli’s “Time to Say Goodbye,” on repeat as Billy, Ryan, and I held her hands. I asked the doctor to turn the volume off a machine so we didn’t have to hear the beeping anymore.

As we kept telling Cammy how much we loved her and reminded her that we were there, I glanced up and saw all her vitals dive. I screamed “take the mask off!” because I wanted her to pass without any machines attached to her. I wanted to free her and see her beautiful face.

I fell to my knees, weeping, as the doctor put his stethoscope on one last time to declare she’d passed. The one thing that gave me peace was looking at Cammy’s body. It was as if I saw her Rett syndrome leave her body. All of a sudden, her fingers were stretched out, her neck was no longer tight to her left side, and I could move her body easily.

Cammy was finally free of the body that had imprisoned her. I instantly imagined her yelling “Grandma, Papa Joe, I’m here!” to my parents as she ran into their arms for a hug.

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.