Adapting to a Significant Shift in Our Daily Rhythms

In the heart of a bustling family, Sabrina L. Johnson and her husband navigate the complexities of life with their 13-year-old daughter, Juliana, who has Angelman syndrome. The family's days are filled with regular checkups and medication updates for Juliana, as they strive to ensure her health and wellbeing.

Juliana's sister, Jessa, adds to the family's active lifestyle as she cheers for her school. This requires additional arrangements to accommodate Juliana's needs, but the family manages admirably. Sabrina admires families who juggle multiple commitments, yet finds it a challenge due to Angelman syndrome.

The family's routine was disrupted slightly when Sabrina's husband took on a part-time coaching job at Jessa's school. Initially, the change was minimal, but later, conflicts arose due to sports practices and competing events, causing a shake-up to their schedule.

Despite the challenges, Sabrina values simplicity in her life. She works in her classroom while Juliana relaxes and watches her iPad. This routine helps in managing various activities, such as back-to-school plans, birthday celebrations, and holiday gatherings.

Last weekend, there was another schedule shift due to a game change. However, Sabrina is pleased they had a little margin in their lives to try something new.

It's important to note that the family's experiences are unique to them, and their story should not be generalised. The opinions expressed in this article are not those of Angelman Syndrome News or its parent company, Bionews.

Juliana had a good start to her seventh grade year, academically and health-wise. Despite a rocky summer due to hormones, no major medical crises have occurred since. The family's friends have been a valuable source of support, helping with Juliana when Sabrina and her husband were away due to conflicts in their schedules.

The writer is not one of the families that are always moving and shaking. Instead, they find joy in the simplicity of their life, cherishing each moment with their remarkable daughter, Juliana.

This article is not a substitute for professional medical advice, diagnosis, or treatment. It is intended to share the experiences of one family navigating life with Angelman syndrome.