When I Close My Eyes and Make a Wish

On my fifth birthday, I closed my eyes and wished for a two-wheeler with a banana seat and streamers coming out of the handlebars. I blew out the candles. A couple weeks later, on Christmas, the bicycle appeared. On my 11th birthday, I closed my eyes and wished that my basketball team would beat St. Eugene School. I blew out the candles. A few days later, we beat St. Eugene.

All my birthday wishes in the first quarter of my life were selfish wishes for tangible things. On Dec. 10, 2008, my 29th birthday, I wished for a healthy, smart, athletic, carefree, beautiful daughter with an easy life. On March 10, 2009, part of that wish came true.

Cammy was born seemingly perfect, as most children with Rett syndrome are. She hit her first few milestones on time. By 8 weeks, she was sleeping through the night from 8 p.m. to 8 a.m. She was so laid-back. I’d won the lottery, I thought.

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At 6 months, Cammy sat up on her own, fed herself, and babbled.

But after that, she began to stagnate, and then regress. By 9 months, she’d begun falling backward as she sat unassisted. She showed no interest in crawling. Her left hand fumbled with items she used to easily pick up and hold.

Cammy was 9 months old when I turned 30. On Dec. 10, 2009, I closed my eyes and wished for Cammy to catch up on her skills. I blew out the candles.

Months went by, and my wish was not coming true. In fact, she was regressing even more. On Cammy’s first birthday, I made a wish for her. I closed my eyes and wished for an answer as to why she was regressing. I blew out her candle.

Columnist Jackie Babiarz shares a smile with her daughter, Cammy, on her 30th birthday in 2009. (Photo by Bill Babiarz)

More months and countless appointments, therapies, physicians, and specialists followed without progress or answers. A couple weeks before my 31st birthday, Cammy was clinically diagnosed with Rett syndrome. She was beautiful and smart, but my wish for her to have an easy, carefree, healthy life was dashed the second the words “Rett syndrome” came out of the doctor’s mouth. I did win the lottery — the Rett syndrome lottery, where the odds are one in 10,000.

On my 31st birthday, I wished Cammy did not have Rett syndrome, that the blood test would be negative. On Jan. 7, 2010, that wish did not come true. The blood test verified that Cammy had Rett syndrome. On every birthday since, I have wished for a cure for Rett syndrome.

I know we are not supposed to share our wishes, but I believe that my husband, Cammy’s sister, many of our relatives and friends, and Cammy all make the same wish.

On Dec. 10, I will celebrate my 42nd birthday. I will just have one wish.

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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.