In Spite of Challenging Times for Our Beloved One, We Persist with Our Intentions Unchanged
In a world where life's challenges can sometimes feel overwhelming, one family has found a unique way to manage the day-to-day trials of living with Angelman syndrome. This neurological disorder, which affects communication and physical development, presents a myriad of challenges, but for Juliana and her family, a love for water activities and a strategic approach have helped them find a balance.
Juliana, who finds solace in water activities, has had to adapt her love for swimming to the comfort of their home. This adjustment, while necessary to avoid potential triggers, has not dampened her spirit. The family's home has become a makeshift swimming pool, providing Juliana with a sense of calm and normalcy.
The family's strategy of "divide and conquer" has been instrumental in managing the complexities of life with Angelman syndrome. By splitting resources and attention, they have been able to accomplish their goals while catering to each child's unique needs. This approach has proven beneficial during special occasions, such as Easter, when one parent handled one daughter while the other took care of the other.
Flexibility is key in the family's lifestyle. They understand that unexpected challenges are part and parcel of living with Angelman syndrome, and they adapt their plans accordingly. This flexibility extends to prioritising the needs and wants of all siblings, recognising that breaking plans can send a message that some needs are not important.
The family is mindful of the potential impact on their other children when one child with Angelman syndrome has a bad day. They carefully balance their time, often keeping one child at home while the other participates in an activity, to find a happy medium. This compromise is a common strategy employed to manage difficult days.
Children with Angelman syndrome may exhibit anxiety and other health issues that can affect their disposition. The family's approach to managing these challenges includes switching gears quickly, ensuring they keep their plans when bowing out is not an option. This adaptability is echoed by Marisa Wexler, who suggests that choosing to divide and conquer gives families flexibility, as unexpected things often arise when living with Angelman syndrome.
Despite the challenges, the family makes a conscious effort to get out as a family or take staycations to relax. They understand the importance of finding time to recharge and enjoy each other's company, even amidst the chaos.
While the reasons behind Juliana's love for water activities remain a mystery, one thing is certain: the family's strategic approach and adaptability have helped them find a sense of normalcy and joy in their lives. Their story serves as a testament to the power of love, flexibility, and resilience in the face of adversity.
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