Lessons from my daughter on letting go of frustration

Being a parent teaches many life lessons, but parenting a child with a rare disease like aromatic l-amino acid decarboxylase (AADC) deficiency has offered me even deeper insights into patience, resilience, and emotional balance. My daughter, Rylae-Ann, has taught me more than anyone else about not holding on to grudges or allowing negative emotions to simmer inside.

From the time she was young, Rylae-Ann’s involuntary movements, dystonia, and difficulty with emotional expression presented daily challenges. A simple meal could turn into a mess, with milk spilling everywhere and food thrown across the room. She couldn’t control her body or her emotions, and while we knew these actions were not intentional, it was hard not to feel frustrated.

Rylae-Ann would sometimes hit, cry, or squirm uncontrollably during feedings, making everyday tasks feel monumental. I vividly remember moments when she would slap my face or kick her mom, Judy, in the stomach as we all lay in bed. Every time this happened, we’d have to move forward as if nothing had occurred, yet the anger would linger inside me.

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Choosing the rocks

Nearly five years ago, when Rylae-Ann underwent gene therapy, her progress was remarkable. Many of her severe symptoms lessened, but some new challenges arose as she worked hard to close developmental gaps. One thing that remained was her anxiety, which sometimes led to impulsive actions. A plate full of food or a cup of juice could be knocked over instantly, leaving the floor and table a disaster zone.

After upsetting her parents in the morning, Rylae-Ann Poulin returns to their room to show off how she put on her shirt. (Photo by Richard E. Poulin III)

As any parent might, I’d feel the anger rise again. Yet, in each of these moments, I found that I couldn’t dwell on the frustration. Rylae-Ann’s ability to move on from these incidents as if nothing had happened taught me an essential lesson. She’d come to me just minutes after throwing food or knocking over her cup, laughing and smiling, her innocent giggles filling the air.

At first, I’d find myself still caught up in the moment, wanting to stay angry or upset. But as I looked at her carefree smile, I realized how powerful it is to let go.

In their innocence, children don’t hold on to negative feelings for long. They live in the moment and don’t allow a single incident to ruin their day. Rylae-Ann’s ability to move past those moments with joy made me reflect on how I was holding on to petty frustrations. Why should I allow one spilled plate or a squirmy feeding to cloud my mood for the entire day? We’ve come so far on our journey together, and it seemed absurd to let these moments fester inside me.

It reminded me of the analogy of rocks, pebbles, and sand. The rocks represent what truly matters in life: family, love, and health. Pebbles are important things, like work, and the sand represents minor things, such as our daily frustrations. If we first fill our jar with sand, we won’t have room for what truly matters.

So now, whenever Rylae-Ann giggles after a frustrating moment, I remind myself to focus on the rocks in my life. Our journey has had its rough patches, but our days are filled with more joy than hardship, thanks to the lessons my daughter continues to teach me.

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.