I have chosen to release my list of hopeful things in several installments. The first and second parts describe the positive relationships in my life and the ways in which I have grown since my youngest daughter received her diagnosis. However, I still haven’t focused on the most important person of all: JJ herself.
Rett Syndrome is not kind to the people who live with it. But like many others who have her disease, JJ finds lots of ways to be happy. She is sweet-natured, works hard every day, and is the best cuddler I’ve ever met. She’s also smart. Our family continues to discover devices and pieces of equipment that help her communicate and show us just what she’s capable of.
JJ’s diagnosis does have its silver linings. It has allowed us to access the right advice, better medications, and the most accurate information about scientific advancements in the world of Rett Syndrome. Researchers have made many exciting discoveries about my daughter's disease in recent years, and promising treatments hover on the horizon.
My third list of hopeful things centers on my daughter and the disease with which she has been diagnosed. If you are struggling with a diagnosis for your own child, I know how difficult this can be. But through JJ, I have learned that a person is so much more than a series of symptoms, and that a diagnosis is not the end of the world. Often, it is only the beginning.
Here it is—the latest installment of my list of hopeful things.
Claire’s List:
1. Even though Rett Syndrome robs children of some of their skills, I have seen how the right equipment and therapies can regain some of that ground. It is because of JJ’s shoe inserts, de-rotation straps, and behavioral therapist that she learned to walk at the age of two-and-a-half. Through occupational therapy, she has regained enough hand function to hit recordable buttons and visual icons, play with switch toys, and control the music on her Bluetooth speaker.
2. Thanks to JJ, I’ve learned that there are many ways of “talking.” She can answer yes/no questions with her eyes, push buttons with pre-recorded phrases on them, and hit picture icons. She is also learning to use a high-tech eye-gaze device with a sophisticated language system on it. Once mastered, she might be able to use it to read, write, complete homework assignments, and hold entire conversations. She has also learned most of the words said around her.
3. My daughter often makes new, exciting, and unexpected accomplishments. JJ learned to walk when no one was sure she would. She finds creative ways to communicate and shows an understanding of complex words and ideas she picked up on her own. There’s nothing like watching your child smash expectations and do things they weren’t “supposed” to do to make you glow with pride.
4. JJ can’t move as well as other children her age. Of course, this makes me sad, but it also means I cuddle her every day in a way most other toddlers would never tolerate. The time she spends on my lap is sweet and precious. Whenever I tell her what a good cuddler she is, JJ’s face lights up at my words. I think she loves just it as much as I do.
5. JJ is smart, but she’s certainly not the only one. I’ve come across story after story about children with Rett Syndrome who play tricks, make jokes, and surprise everyone around them with their ingenuity, resourcefulness, and creativity. Researchers are exploring new ways to measure the cognitive abilities of people with Rett Syndrome and are finding that when tested the right way, some participants can perform at or even above their age level.
6. A diagnosis has allowed us to put a name to my daughter’s struggles. It has also meant we could create a team of medical professionals, access the right equipment and therapies, and test out the correct medications.
7. The more we get JJ’s health issues under control, the healthier she becomes. This means my family is able to go out in public more and worry less. Everyone is happier.
8. Science is advancing quickly on many fronts. When it comes to the world of Rett Syndrome, there is a new drug coming up for FDA approval, a gene replacement trial set to begin soon, and many more genetic therapeutics in the works.
What hopeful things do you notice about your child? What are the ways in which they have exceeded your expectations? Are there positives to having a diagnosis for them? Let me know in the comments below.