Chinese New Year festivities span a two-week period, brimming with culinary delights and exhilarating experiences that can be overwhelming.
Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase deficiency. This rare condition necessitated a collaborative effort between my wife, Judy, and myself to ensure our daughter’s well-being. Amid the numerous challenges we faced, managing anxiety was particularly demanding.
Typically, we opt for more subdued holiday observances due to Rylae-Ann’s proclivity for restlessness and schedule disruptions at such events. As parents, it often feels easier to adhere to our familiar routine, almost like a form of escapism.
This year, we’ve decided to deviate from our usual approach by minimizing travel and staying close to home. By immersing ourselves more in the company of family and friends, we’ve encountered some unexpected outcomes.
Fireworks, Drums, and Cheers
Chinese New Year traditions involve vibrant displays of fireworks, drums, and jubilant cheers, rooted in the belief of warding off the mythical Nian beast for a prosperous year ahead. While these customs bring a sense of security and good fortune to the community, individuals with sensory sensitivities may perceive them differently.
Rylae-Ann had the opportunity to witness her school’s lion dancers in action amidst the rhythmic beats of drums and cymbals. We’ve been diligently addressing her sensory challenges, gradually introducing her to the festive atmosphere without imposing undue pressure. When the initial burst of firecrackers resounded, a flicker of apprehension crossed her face, but with our reassuring gestures, she observed the spectacle with growing fascination.
The subsequent performances by the lion dancers, accompanied by lively drumming and more firecrackers, elicited joyful clapping from Rylae-Ann. Though our participation was brief compared to other families, we were pleasantly surprised by Rylae-Ann’s engagement.
Midnight Blessings
Similar to Western New Year’s Eve traditions, Chinese New Year’s Eve is a time for intimate gatherings of family and friends. However, the focus is on solemn prayers and blessings, marked by a more reserved ambiance.
Before Rylae-Ann’s arrival, Judy and I used to join her family for a midnight blessing at the temple. The ceremony involved chanting, burning incense, and kneeling—a test of endurance for me as an adult. We never envisioned Rylae-Ann partaking in such rituals.
This Chinese New Year, being homebound, we decided to involve Rylae-Ann in the ceremony. Establishing a contingency plan in case she became unsettled, we were pleasantly surprised that it remained unnecessary.
Upon meeting with family members, Rylae-Ann received abundant affection and support. Throughout the ceremony, she displayed genuine interest, occasionally deviating from protocol to explore the surroundings. Despite these deviations, everyone present showed great understanding.
Rylae-Ann stayed awake past midnight, a departure from our strict adherence to her schedule, akin to a prescribed regimen. While consistency is usually paramount, allowing flexibility is equally crucial.
Though Judy and I tend to err on the side of caution, sticking to the familiar, we mustn’t forget our initial journey with Rylae-Ann’s condition. Remaining open-minded, exploring new avenues, and embracing the unexpected are vital aspects of our growth as a family.
As we cherish these fleeting moments, we also welcome the unforeseen with open arms.
Note: AADC News is dedicated to providing news and information about aromatic l-amino acid decarboxylase deficiency. It does not offer medical advice or endorsements. For medical concerns, consult a qualified healthcare professional. The views expressed in this article do not necessarily reflect those of AADC News or its parent company, BioNews, and are intended to stimulate dialogue on matters related to AADC deficiency.