Finding Gratitude After My Daughter’s Rett Syndrome Diagnosis

Columnist Jackie Babiarz reflects on a tumultuous Thanksgiving

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by Jackie Babiarz |

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Thanksgiving 2010 was the first emotional roller coaster holiday I experienced. Two days earlier, I had taken my 18-month-old daughter, Cammy, to a physiatrist to see if she could provide any insight as to why Cammy was regressing. The physiatrist didn’t know, but she called in another doctor who immediately recognized that Cammy having her hand in her mouth was a hallmark sign of Rett syndrome. It was the first time I’d heard those words.

For the next two days, prior to seeing both sides of our family for Thanksgiving, my husband, Billy, and I marinated on this clinical diagnosis. We still needed bloodwork to confirm that it was Rett syndrome, but after reading about the condition’s classic symptoms, it made sense. As much as our heads tried to deny that Cammy had Rett, citing the few symptoms that didn’t fit, our hearts knew this was the answer.

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How We Responded During the Dark Days of Our Daughter’s Diagnosis

I am the youngest of six children, and at that point in 2010, I had 13 nieces and nephews. Holidays have always been crowded, busy, and loud in my family. I didn’t want to bring up our most recent appointment around everyone, knowing I would fall apart if I did.

On the holiday when we’re supposed to give thanks, I felt anything but thankful. My siblings knew not to ask about Cammy’s health unless I brought it up. They knew how much agony I’d been in over the past year as I searched for a diagnosis.

All my nieces and nephews were running around, playing games, laughing, and having silly conversations while Cammy was unable to walk, crawl, or talk, and had recently lost all function in both hands. I was holding back tears as the list of Rett symptoms ran through my head. Observing all that my family was doing reminded me of the prognosis for children with Rett syndrome. Cammy would never be able to participate in any of the activities at our family gatherings.

At dinner, I made the mistake of sitting next to my parents. As soon as I sat down, my dad asked, “How did the appointment go on Tuesday?”

Tears welled up in my eyes as I replied, “Not good.”

My mom chimed in, saying, “We’ll talk about it when you’re ready.” One of my sisters then quickly changed the subject to help me get through the rest of the holiday.

On Friday, I drove to my parents’ house and shared the clinical Rett syndrome diagnosis with them. I cried nonstop as my mom hugged me. My dad, not one for showing emotions, did what he did best: He swooped up Cammy, plopped her on his belly, and made her giggle. I was 30 years old and had never needed my mom and dad more.

Over the following weeks, my family stepped up their support to a whole new level. They checked in on me and my mental health every single day. They came over to help with Cammy and offer me some relief, as I was dealing with this stress while in my final trimester with our second child. They helped me prepare follow-up questions and next steps to take if the Rett diagnosis was confirmed.

I didn’t see it at the time, but I truly had a lot to be thankful for that Thanksgiving.

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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