Our teenager with Rett syndrome is at infant development stage

I tend to become quite envious when I see parents selling their no longer needed baby items. It means they’re done with changing diapers, pushing strollers, and cleaning up drool. Their children are at a more independent stage of development. Having a child with Rett syndrome means that I will never exit this stage.

My oldest daughter, Cammy, was diagnosed with Rett syndrome when she was 20 months old. She never crawled or walked. She lost the use of her hands entirely, meaning that she can’t feed herself, hold anything, or communicate with her hands. From birth to her current age of 14, Cammy has been nursed, bottle fed, self-fed for a couple months before regressing to spoon-fed, and now has a feeding tube. Our teenager will forever be at an infant stage of life for many things.

Diapers and wipes are the most glaring items that highlight this reality. We will forever rely on Amazon auto-delivery for such things. Each month, a shipment of diapers and wipes arrives at our house. During the school year, we are among a small percentage of parents who send these items to school. While most teenagers use the bathroom independently, our daughter does not.

Recommended Reading

June 28, 2023 News by Lindsey Shapiro, PhD

Caregivers share impact of Rett symptoms in survey

Cammy did eventually outgrow a stroller, but she immediately transitioned to a wheelchair, which is even bigger. Over the years, we added a couple strollers back into the mix, including a special needs running stroller and an all-terrain one to help preserve the wheelchair. Regardless which chair Cammy is in, when a toddler runs up to her, it is a gut punch to me that the child has physically surpassed her.

While we ditched the bibs and burping clothes, we still needed something for drool and vomit. To be more age appropriate than a bib, Cammy wears an infinity scarf every day. Aside from their being fashionable, teachers, therapists, and aides can discreetly wipe any secretions throughout the day. Then, when Cammy is unwell, we rely on chucks pads, while most other kids are able to run to the bathroom on their own to vomit.

One of the joys of children growing up is that they become a built-in babysitter. By the time most families have a 14-year-old, the child is able to stay at home alone or watch the younger kids in the house. We will never experience this with Cammy. We still have to pay for a babysitter until our younger daughter is old and strong enough to lift Cammy on her own. Knowing that our daughter will forever need a caregiver is not only extremely emotional, but the situation is also a financial burden on our family.

Cammy will eventually go through all stages of life — pregnancy, infancy, the toddler years, childhood, adolescence, adulthood, middle age, and the senior years. However, our family will be trapped in the infancy stage in so many ways. Our daughter will forever depend on us for her most basic needs while going through the other stages of life.

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.