By adapting celebrations, our daughter has meaningful moments

As Christmas approached, Rylae-Ann practiced jingles and dances onstage while decked out in a colorful costume. When showtime came, however, crying and anxiety ensued.

After much prodding, Rylae-Ann (center foreground in this manipulated photo) successfully performs her Christmas celebration in front of an audience. (Photo by Richard E. Poulin III)

The performance went well, but her practices were much more enjoyable. She only made it to the stage after my wife, Judy, and I highly encouraged her to get her butt up there. And for what? For our personal satisfaction, to say that our daughter performed in front of others.

But it wasn’t our show. We were only spectators. We weren’t the ones who had to get up and perform with the eyes of strangers looking on from a darkened auditorium. We didn’t have to feel the shakes of anxiety move from our toes to deep into our gut.

Reflecting on our journey

We had come so far with our daughter. Judy, my wife, and I worked patiently to manage her symptoms of aromatic l-amino acid decarboxylase (AADC) deficiency when she was so helpless. After receiving gene therapy, she began to make much progress.

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It was enough, in fact, that we began neglecting her challenges and pushing her along a traditional pathway. This approach wasn’t fair to her. We’ve done much reflection and are now considering homeschooling her.

Rylae-Ann wears a dress to cover her spica cast and celebrates Halloween her own way. (Courtesy of Richard E. Poulin III)

In the past, we were creative parents who modified Halloween to be meaningful for her by establishing our own customs. As the end of the year approached, we considered how to do the same with the impending end-of-year kindergarten graduation ceremony.

Creating meaningful memories

As with the Christmas celebration show, Rylae-Ann performed amazingly well. We were so proud of her. However, we again began to have selfish parental feelings about how to plan her graduation ceremony.

But then we paused and thought, for what? Why should we spoil her happiness and success so that we could brag about our daughter performing in front of others when we knew she had no desire to do so? We changed our planning process and considered how we could make her graduation more meaningful to her.

The solution was simple. Rylae-Ann attends a supportive school with a team of teachers caring for her dearly. Since Judy and I are educators, we have the benefit of access to areas of the school that aren’t available to most parents.

Rylae-Ann proudly holds her diploma during her personal kindergarten graduation. (Photo by Richard E. Poulin III)

We decided her final practice would be her actual graduation. We were given front-row seats to the performance, so there were no parents to contend with to get that perfect shot. The other students practiced getting their diplomas and stuffed bears. For Rylae-Ann, it was the real thing.

She danced and sang while laughing and grinning from ear to ear the entire time. Judy let the tears flow while I attempted to fight back tears and keep the camera steady. I’m sure other parents would also love to have a private show for their kids. Even if they disapproved that she didn’t attend the actual graduation ceremony, her modified ceremony meant the world to us.

Moving forward, we’ll be mindful of our parental desires and prioritize Rylae-Ann’s well-being. Doing so will allow us to continue on our journey of beautiful memories.

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.