The anniversary of our daughter’s diagnosis reminds us of what we have learned


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At 2:45 p.m. on January 7, 2011, we received a phone call confirming that our daughter Cammy had Rett Syndrome. Since then, our lives have not been the same. We have grown so much over the past 11 years.

We have learned to mourn the loss of a “perfect” child. The stages of grief – denial, anger, bargaining, depression, and acceptance – are underway, and we’ll likely never complete the stages, as we don’t accept that Rett syndrome is a life sentence for Cammy.

We have learned that life goes on and that it is not our fault. We are fighters, not victims. We had a bad hand, but we will always set the bar high.

We have learned that sleep deprivation is a form of torture, and Cammy’s period of regression has been the worst.

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We learned how a little brother saved our lives. Ryan doesn’t remember his older sister being any different, and their love for each other is pure. We can celebrate Ryan’s milestones and accomplishments in front of Cammy because she’s so proud of her sister.

We have learned that the eyes are truly the windows to the soul. Cammy says so many things without saying a single word. We celebrate the ways in which she is able to communicate, such as by waving.

We have learned that our family and friends suffer as much as we do.

We have learned that doctors are not always right. Over time, we’ve proven that medical professionals and non-medical people are wrong.

We have learned that not all therapists and teachers are suitable for our child, but some become like family.

We have learned how many resources the International Rett Syndrome Foundation provides. Through the organization, we have met many amazing Rett families who we now call friends.

We have learned which family and which friends we can fall for. These people understand that we only need someone to listen while we escape. Most just can’t understand our situation, and at the end of the day it’s our family of four that really understands each other.

We’ve learned that when people say, “I don’t know how you do it”, we shouldn’t say, “That’s what anybody would do,” because that’s not the case. Not everyone would run 150 miles in five days for their child, or travel to Boston from southern Illinois 65 times in 18 months for a clinical trial. Not everyone sticks together in difficult times. It’s okay that not everyone does what we do. We don’t judge others.

We’ve learned that everyone wants to see Cammy succeed, smile and heal. Like us, people want the outsider to win. We don’t share all the bad, heartbreaking, terrible things Rett has done to us, because it’s just too hard, but loved ones and complete strangers give us the strength to face it all.

diagnostic anniversary |  Rett Syndrome News |  Side-by-side photos of Cammy show her in January 2011, right after her diagnosis of Rett syndrome, and 11 years later, in January 2022.

Photo by Jacqueline Babiarz

Cammy is pictured 11 years apart, in January 2011 and 2022 (Photos by Jacqueline Babiarz)

We’ve learned that people want to be told exactly how to help.

We learned how to spot a family with special needs and how to approach them.

We have learned that we have a lot more to learn.

We learned that Cammy changed the world with Rett Syndrome and touched more hearts than we could ever imagine.

Rett can break us, but he will never break us. This condition ruined the wrong child and the wrong family.

We learned that Cammy Can.

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To note: Rett Syndrome News is strictly a disease news and information site. 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 doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard or seek professional medical advice 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 stimulate discussion on issues relating to rett syndrome.

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