Affection for summer won't eclipse my concern for guardianship
In the heart of summer, a family is navigating a significant milestone for their daughter, Juliana, who has Angelman syndrome. The conversation about guardianship, a necessary step due to Juliana's condition, is typically had with parents during their child's first year of middle school.
The family is no stranger to the paperwork involved, having gone through a similar process when they adopted Juliana as a baby. Now, five years from now, guardianship for Juliana is expected to occur. Yet, the speaker, Juliana's parent, is determined to make the most of the present moment, rather than constantly dwelling on what lies ahead.
"I enjoy the lazy days of summer," the speaker shares, "I don't want to miss it by worrying about guardianship."
The speaker acknowledges the foreboding joy that comes with living with Angelman syndrome, a condition that requires lifelong care. The condition grants Juliana's guardians authority over her health, legal, and financial decisions when she becomes an adult.
Despite the reminders about guardianship at every turn, the speaker prefers to focus on enjoying the moment. Not focusing on the future is a way for them to keep their sanity. "I'm working on being joyful in the moment and not fearing the next big scare," the speaker says.
The search results do not provide any information about the name of the organization that applied for legal guardianship for Juliana. The family is moving forward, one day at a time, focusing on the present and the joy that Juliana brings to their lives.
This article is a news and information website about Angelman syndrome and does not provide medical advice, diagnosis, or treatment. It is intended to spark discussion about issues pertaining to Angelman syndrome.
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