This year, I’m going to enjoy the present, cherish the small moments
Rylae-Ann is getting older; I want to emphasize the here and now while I can
As I carried my daughter, Rylae-Ann, to bed one night over Christmas vacation, I noticed my arms shake beneath her. There’s no denying it, the days of her being a baby, a toddler, and even a preschooler are over.
I stayed that night for a few extra minutes longer, watching her sleep with this new realization.
I love to look forward to the future at what life brings next. I also enjoy looking at old photos and reminiscing about the past, but the idea of getting older doesn’t bother me too much. The same is true when I think of my daughter entering a new stage in life. Our winter vacation and the obligatory New Year’s reflection have given me a new perspective to consider as our family heads into 2024.
Appreciating the small moments
In 2023, I felt so blessed by to amount of traveling we could do and the benefits it offers Rylae-Ann. My wife, Judy, and I have similar work schedules and as educators, we’re fortunate to have ample holiday time throughout the year.
Rylae-Ann Poulin sleeps off the travel exhaustion. (Photo by Richard E. Poulin III)
We use the holidays to escape and visit new areas. It was a passion Judy and I loved doing together for nearly two decades before Rylae-Ann was born. After she was born, we wanted the same for her.
However, the diagnostic odyssey to discover what her health condition was and trips to the emergency room derailed those plans. Even after Judy and I learned Rylae-Ann had a rare neurotransmitter disorder called aromatic l-amino acid decarboxylase (AADC) deficiency, there was very little we could do to keep her out of the hospital, let alone live the life we dreamed for her.
Fortunately, Rylae-Ann was able to receive gene therapy. Besides hip surgery and some typical childhood illnesses, she’s been hospital-free and living a more active life. This has included traveling.
The previous year was filled with many significant moments that hinged on hopping on an airplane to a new destination. I could easily list them on my fingers, though.
Rylae-Ann Poulin enjoys a snack. (Photo by Richard E. Poulin III)
Returning home and reestablishing our routines and schedule made me consider how I also enjoyed the small moments of daily life — sitting down and eating, cleaning up, showering, reading a book, and then going to bed, things we do and repeat every day that require very little thought.
But noticing my daughter getting older caused me to rethink how we should approach 2024. We still plan to travel, but I want to emphasize the here and now more and be present in the moment, even in the mundane tasks. There are many more small moments than large ones. I want our lives to be focused on something other than looking forward to big trips, which ultimately make up just a small part of our journey.
Buddhism is a big part of the culture of Thailand, where we live. The concept of the present and the importance of being in the moment permeates society. As my daughter begins to grow up, I want the future to slow down and the present to last longer.
There’s no stopping the hands of time, but we can make the journey last a little longer by savoring the small moments of daily life, the precious minutes of our ordinary days.
Note: AADC 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 AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.
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