Hope: May The Good Times Continue

Every December I write a post in which I reflect both on what happened to my family over the past twelve months and on what that year has taught me about the concept of hope. When it comes to my daughter, JJ, and the fight against her disease, this year was the most hopeful one yet. Though Rett Syndrome continues to be a looming presence in our lives, we still found many moments of joy and reasons for optimism over the course of 2025.

The biggest cause for celebration happened in late summer. After years of chronic GI issues and discomfort, JJ bravely agreed to undergo a surgery to relieve some of her pain. I am happy to report that it worked even better than expected.

The surgery freed JJ of a great deal of physical discomfort, psychological distress, and emotional turmoil. She emerged from the procedure with more energy, spunk, and determination than ever. It also meant that she could start second grade with confidence. In fact, school is now a place where she has begun to shine. Along with many new friends, she has a teacher who is finding creative ways to harness JJ’s new-found energy, motivating her to excel academically. My daughter is now working her way through a spelling list full of fashion-related words and solving math problems in return for pieces of Taylor Swift trivia. (JJ is a self-proclaimed “Swiftie” and took great delight in this year’s album release). She is truly living her best life.

JJ’s successful surgery has also opened up many new possibilities that we are learning to maximize. She has enough energy, interest, and good health to be able to travel, go on outings, and socialize like never before. And even though it took valuable mental bandwidth, I planned as many events and trips as I could this year, knowing how precious those memories could be for us later. When we went on our biannual visit to the Rett Clinic, we decided to stay an extra day and sightsee—something we had never felt confident doing before. JJ ended up riding the train at the zoo, going on a sunset hike, and visiting a local nature preserve where she saw elk and buffalo in the wild.

A few weeks later, we spent several days at my in-laws’ farm where we toured a local cave, went thrift store shopping for Halloween accessories, and spent the day at a wildlife museum. The rest of the fall season was filled with even more fun: a princess-themed birthday party for her best friend, a trip to our city’s zoo—where she rode a tram, train, and ski-lift—hours of trick or treating, a “Rettgiving” that we celebrated with local Rett families, and multiple playdates. I even arranged for JJ to receive a wish through the Make-A-Wish Foundation. (She hopes to use it to donate accessible playground equipment to a local school).

Though these were exhausting undertakings for my husband and me, they also filled us with gratitude as we watched JJ blossom and her world expand. Before each outing, she would lie awake for hours in bed, squealing to herself and giggling in anticipation of the next day’s adventures. Then she would gather her courage and dive into her new experiences, doing things like boarding a train, petting a starfish, and traveling into the dark depths of a cave. Afterward, I would program details about her excursions into her speech device so she could tell other people about what she had done. After each trip, she would return home impatient to share her exploits with her family, friends, and teachers at school.

In past posts centered on hope I have explored how hope feels like both a verb—a thing that we do and fight for—as well as a place that we visit off and on throughout our lives. But the joys of this year have me thinking about how much hope is also tangled up with time. To feel hopeful is to be simultaneously rooted in the past and linked to the future. Whether we have experienced struggles that make us long for a better future or past joys that we pray will continue, we cannot have hope without considering what has come before. But hope is also by definition forward looking, intently focused on our dreams and plans for what is to come.

However, this year has helped me to realize just how important it is not to let hope overshadow the present. If we always live in a state of anticipation, we risk losing the beauty of the moment. And as much as I want to believe that JJ’s good health and good fortune will continue, I know that they may not. Sometimes, the present is all we have.

Unfortunately, Rett Syndrome is a powerful force, and the scientific advancements strong enough to fight it—medications and gene therapies—are largely out of my family’s control. Indeed, right before JJ’s surgery, we made the worrying discovery that Rett has begun to curve my daughter’s spine. We will do what we can to stave off more curvature, of course, but JJ’s scoliosis is now something that will haunt us into the future. And despite our current good fortune, I still continue to watch with a heavy heart as other Rett children travel in and out of the hospital, contract dangerous respiratory illnesses, undergo spinal fusion surgery, suffer from intractable seizures, and even pass away.

I have been on this path long enough, however, to learn just how little can be gained from dwelling on the painful things in my life with JJ. Though I certainly mourn and grieve and worry, I also try hard to move on from our difficult past and feel grateful for the treatments that will one day exist in the future. But most importantly, I have gotten better at simply enjoying all the good days we are lucky enough to spend with JJ.

As this year comes to a close, I find myself reflecting on how hope fits into so many places along the timeline of JJ’s beautiful, difficult, and complicated life. It is in the painful past we have temporarily escaped, the medical advancements of the future, and the joys and laughter of our present moment. For years, I struggled to be fully anchored in the here and now because I was always striving for progress and change. I focused on better and more—even when things were going well for us. Now, though, I am trying harder than ever to take things as they come. Of course, I hope my family’s good times will continue. But even if they don’t, we can move forward without regret. After all, we will have had some pretty marvelous times along the way.

*Note: Our annual online fundraiser to raise funds for a cure for Rett Syndrome will not occur during this holiday season. Instead, I am aiming for next February—in honor of JJ’s birthday month.