What We’ve Learned Since Our Daughter’s Diagnosis

At 2:45 p.m. on Jan. 7, 2011, we received a phone call confirming that our daughter Cammy has Rett syndrome. Since then, our lives haven’t been the same. We’ve grown so much in the past 11 years.

We’ve learned to grieve the loss of a “perfect” child. The stages of grief — denial, anger, bargaining, depression, and acceptance — are ongoing, and we probably won’t ever finish the steps, because we don’t accept that Rett syndrome is a life sentence for Cammy.

We’ve learned that life goes on, and it’s not our fault. We are fighters, not victims. We were dealt a wicked hand, but we’ll always ante up.

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

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We’ve learned how much a little sibling has saved our lives. Ryan doesn’t remember her 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 is genuinely proud of her sister.

We’ve learned that the eyes truly are the windows to the soul. Cammy says so much without uttering a single word. We celebrate the ways she’s able to communicate, such as by waving.

We’ve learned that our family and friends hurt just as much as we do.

We’ve learned that doctors aren’t always right. Over time, we’ve proved both medical professionals and nonmedical people wrong.

We’ve learned that not every therapist and teacher is a good fit for our child, but some become like family.

We’ve learned how many resources the International Rett Syndrome Foundation provides. Through the organization, we’ve met many incredible Rett families whom we now call friends.

We’ve learned which family and friends we can break down to. These people understand that we only need someone who will listen while we vent. Most simply can’t understand our situation, and at the end of the day, it’s our family of four that truly understands one another.

We’ve learned that when people say, “I don’t know how you do it,” we shouldn’t respond, “This is what anyone would do,” because it’s not. Not everyone would run 150 miles in five days for their child, or travel to Boston from southern Illinois 65 times over 18 months for a clinical trial. Not everyone sticks together during trying times. It’s OK that not everyone would do what we do. We don’t judge others.

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

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’ve learned how to detect a special needs family, and how to approach them.

We’ve learned that we have much more to learn.

We’ve learned that Cammy has changed the world of Rett syndrome, and touched more hearts than we could ever imagine.

Rett may break us down, but it will never break us. This condition has messed with the wrong kid and the wrong family.

We’ve learned that Cammy Can.

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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.