Our daughter with Rett syndrome now has a 1-to-1 nurse at school

Even a change that brings caregiving relief can at first provoke a mother's anxiety

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by Jackie Babiarz |

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In our special needs world, we sometimes get gut-punched.

I felt this first when our daughter Cammy was diagnosed with Rett syndrome in 2011. I still feel it when we add equipment or a clinician to her team. Even though I try to shift my mindset to realize that each item or person is another piece of ammo we can use to fight Rett, it still hurts because it adds to my emotional toll and anxiety.

This month, I wheeled an oxygen tank into Cammy’s school to prepare for a big change: She’ll now have a nurse who works with her 1-to-1 at school. For the past 12 years of living with all the possible symptoms of Rett, I neglected to think that Cammy might need a 1-to-1 nurse one day.

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Now that I’m back in the workforce, where I help students with special needs, I understand the value of this 1-to-1 nursing support from more than a parent’s perspective. After all, teachers and aides aren’t medical professionals; they shouldn’t have the onus of making medical decisions for my child. It’s not right to put that on them.

With Rett syndrome, Cammy, now 14, is at risk of seizures, falls, and choking. Her oxygen and heart rate could dip, her breathing could race, and many other medical crises could arise. These uncertainties require a medical professional who can make quick decisions, acting promptly while remaining calm. This burden shouldn’t be on her teaching staff.

This beautiful soul of a nurse arrived early the first morning to meet us and learn a little more about Cammy’s routine. I could tell she did her homework because she knew exactly how to communicate with my daughter. Her questions were thoughtful, and she saw Cammy as a person first.

Cammy was a bit skeptical at first, but then smiled at her. She understands that this woman is a trusted adult whose entire job is to care for her. Cammy knows that her nurse will be right at her side as her advocate and caretaker. That gives us all relief.

Loading Cammy on the bus with her usual backpack, G-tube pump, and eye-gaze device seemed excessive as it was. Adding portable oxygen, a hospital-grade pulse oximeter, and another person feels so heavy to me in every way. My head, however, knows this is the best thing for Cammy, and that this 1-to-1 nurse will ease my mind and prove invaluable to her team.

Whatever Rett syndrome throws our way, we’ll always strike back. It’s just a lot for my heart to process.


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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