We resolve for the new year to spend more time with family
I realized how much we'd missed while living in survival mode
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As we step into 2026, our journey with our daughter, Rylae-Ann, and aromatic L-amino acid decarboxylase (AADC) deficiency continues, but it looks very different from how it once did. For several years, our entire world revolved around her well-being. Every decision, every plan, every ounce of energy was devoted to supporting her growth, health, and emotional stability.
Judy, my wife, poured her heart into advocacy, education, and therapy. I focused on ensuring our family stayed afloat. Together, we centered our lives around our daughter because that was what she needed. This past holiday season reminded us how far we have come.
Home for Christmas
Rylae-Ann, center, stands with family members in front of a Christmas tree during a recent trip to Florida. (Courtesy of Richard E. Poulin III)
Judy, Rylae-Ann, and I spent the last few weeks celebrating Christmas with family in Florida. From the moment we arrived, we were surrounded by warmth, laughter, and a kind of love that can only come from people who have walked beside you during your hardest years. Our family showered all of us with attention, but especially Rylae-Ann — not out of worry or fear, as in years past, but out of joy. They were able to see her as a growing, capable, and curious child.
What stood out most this year was Rylae-Ann’s independence. For the first time, Judy and I were able to leave Grandma’s house without tears. Instead of clinging to us, she waved goodbye and eagerly stayed behind to bake, laugh, and enjoy warm bubble baths. It was a small moment, but it carried enormous meaning. It was a quiet affirmation of everything she has worked for and everything our family has endured together.
Because of her independence, something else shifted. The conversations no longer revolved solely around Rylae-Ann. We were able to sit, listen, and reconnect. I caught up on the struggles and triumphs in the lives of our siblings, cousins, and other family members. We talked about careers, health, parenting, dreams, and worries. I realized how much we had missed while living in survival mode. Our family had always been there for us, offering help, patience, and unwavering support, often without asking for anything in return.
I also realized that we need more time to connect, listen, and give back to the people who have carried us through the hardest chapters of our lives. Our journey with AADC deficiency has taught us resilience, but also how vital family truly is, not just as caregivers or helpers, but as individuals with their own stories that deserve attention and care.
Saying goodbye was hard. It always is. But this time, it was accompanied by hope rather than heaviness. Before we even boarded the plane, we already had a rough idea of a family trip for the summer, something to look forward to and plan together.
Our plane descended over Bangkok at 9 p.m. on New Year’s Eve. We made it home just before midnight. For the first time, Rylae-Ann was still awake for the celebration. Instead of rushing her to bed, we embraced the moment. The three of us ran to a nearby restaurant and rang in the new year together. Above us, fireworks filled the sky, lighting up the kingdom in color and sound.
Under that sky, we each quietly made our resolutions. For 2026, ours is simple: We will continue to support Rylae-Ann as she grows, but we will also continue to nurture our family connections. We will choose presence, gratitude, and balance. Our journey is not over; it is expanding. And as we move forward, we do so together, surrounded by love, resilience, and hope.
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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