I lost 40 pounds — twice

My oldest daughter Cammy weighed 40 pounds at her heaviest. Having a 40-pound 5-year-old would be fine, but Cammy was 14 when she weighed that. Her 4-foot-tall, 40-pound frame was at “failure to thrive” for most of her life.

Cammy’s weight was always a catch-22 for us. It’s scary and dangerous to be severely underweight. However, it would’ve also been difficult for us if Cammy had weighed 110 pounds, the weight of an average 14-year-old girl.

Because of Rett syndrome, Cammy was nonambulatory and unable to use her hands or support herself. It might seem like her weight would be insignificant, but carrying 40 pounds around was rough on my body. The incessant twisting, turning, and holding for over a decade often threw my back out.

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Cammy passed away on Dec. 13, 2023, at the age of 14, due to complications of Rett syndrome. On top of every sort of loss one could imagine when a loved one dies, losing Cammy also meant that I lost 40 pounds that I’d carried around with me. My body needed a lot of time to recover, and I felt like it was healing month by month. My back didn’t give out every few months anymore. My hips were aligning again from not carrying Cammy on my left side. My body wasn’t tensing up due to the fear of dropping her during a transition.

Cammy has been gone for almost two years. In the past year, I’ve lost an additional 40 pounds of my own weight.

I can’t make excuses for not taking care of myself. I gained so much weight after Cammy was diagnosed with Rett syndrome in 2010. The bottom line is that I didn’t take care of myself while caring for Cammy.

I’ve always had trouble knowing what a certain amount of weight looked or felt like when it was mentioned, unless I was physically lifting it. Once I hit that 40-pound milestone, I knew exactly what 40 pounds felt like by thinking about what it was like carrying Cammy around all the time. I’d been carrying around 80 pounds of extra weight for years!

Of course, this is all in hindsight, and I should’ve been healthier while caring for an immunocompromised child who relied on me around the clock. I know I would’ve had more energy, felt stronger, and been a better example for both of my children about eating a healthy diet and having a positive self-image. I’ll never get over losing my 40-pound child, but losing my own 40 pounds has given me some of my life back.

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.