I Know You, Struggling Parent

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by Jackie Babiarz |

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When Cammy was 14 months old, she and her cousin Olivia took a weekly toddler music class called Wiggleworms. I dreaded trying my best each week to put a smile on my face and pretend to have fun. I was puppet master to my 14-month-old, acting as her arms and legs, playing kids instruments, and singing as I watched every other 12- to 24-month-old in there doing everything on their own.

It seemed like every single week a different classmate of Cammys learned to walk. It was gut-wrenching for me to be there with my child who was not progressing. I watched every other parent in there enjoy having their child actively participate in the class.

While driving home, I’d cry and wonder, “What is wrong with Cammy? Why isnt she crawling or walking, picking up instruments and playing them, or marching in a circle and singing like every other child?” A few months later, we learned Rett syndrome was the answer to all my questions.  

When Cammy was 4 years old, her sister, Ryan, 2 years old, took a gymnastics class. She was the youngest of the group, yet the only child in there shouting out the correct letters held up by the teacher. While I knew my child was not a genius or destined to be the next Olympic gymnast, I felt conflicted: Should I encourage her to continue to answer the questions or do I tell her to be quiet? A couple years prior, I would have been extremely annoyed by the behavior of my child and me

Meanwhile, my heart hurt as I watched a mom and her nonverbal, clumsy son. A few years ago, I would have thought that the parents were not working with him at all to develop speech, language, and fineand grossmotor skills. Instead, though, I looked at him and understood his parents were doing everything they could for him. He simply was not on the typical developmental path. I knew it probably took everything for that mom to put a smile on her face, come to class, try her best, and watch him try his best while every other child in there was cruising past him physically and verbally.

That was over a decade ago. I still have that flashback whenever I take my neurotypical child, Ryan, to a class. On the flip side, I get to sit back and watch this child actively participate on her own. Everything comes easier to this one. She works hard and shows her enjoyment with a huge smile on her face, surpassed only by the smile on my face. I keep that memory of music class tucked in the back of my head whenever I notice a classmate of Ryan’s who is delayed. My heart breaks as I watch the mom or dad put on a happy face while his or her child struggles.

I know you. I want to hug you. Sometimes, I do.

Read my 2013 thoughts about Cammy’s music class at my blog, “Cammy Can.”


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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