On a ‘Rett Day,’ We Can Only Ride Out the Pain

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by Jackie Babiarz |

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Some days my 13-year-old daughter, Cammy, has what I call a “Rett day.” I can’t think of another way to phrase it.

Rett syndrome has taken Cammy’s ability to speak. She can’t use her voice to talk to my husband and me or let us know what makes her happy or sad. It has robbed her of the use of her hands, which means that if something hurts, she can’t point out the painful area of her body. The result is an increased tolerance for pain, which may sound cool, but actually is very dangerous.

Some days Cammy moans incessantly for hours. The sparkle in her eyes is gone. This is agony for all of us in the family. Nothing hurts me more as a parent than being unable to ease my child’s pain and sadness.

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In response, my husband and I go through a checklist of things that might be bothering her, and Cammy tells us yes or no with her eyes.

“Does something on or in your body hurt?” Her eyes look away to indicate no.

“Did something happen at school?” She looks away again.

“Was someone mean to you?” She looks away.

“Are you just having a rough day?” Her eyes meet mine to indicate yes.

I know then that Cammy is having a Rett day. There is nothing we can do to stop the moaning, discomfort, sadness, and gloom. Sometimes the only way we can take care of Cammy is just to be with her.

When we are riding out a Rett day, broken down and tired, I always look for a simple smile to let me know that everything will be OK. Sometimes I get it, sometimes I don’t. It has taken me 10 years to accept that I just have to wait it out until Rett syndrome loosens its grips on our little girl. I don’t like one second of this, but I accept it.

I apologize to Cammy throughout the day and then wait for the Rett day to be over. I stare at the clock wishing it was bedtime. I reassure Cammy that the next day will be better, but I’m actually trying to convince myself.

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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