Hospital Souvenir Transforms Terrifying Recollections into Positive Ones
In the summer of 2011, a significant change occurred in the life of a family when their 12-year-old daughter, Angel, was admitted to Children's Healthcare of Atlanta due to seizures. This four-day hospitalization marked the beginning of a journey that would shape their lives forever.
Juliana's first seizure occurred on Father's Day morning that year, and the event left an indelible mark on the family. The author, who was initially unaware that seizures are common in individuals with Angelman Syndrome (AS), found themselves navigating uncharted waters.
The early diagnosis allowed for some great early interventions for Juliana. The fear from the hospital stay has diminished, but some days they still struggle for answers. Despite the challenges, the author views Juliana's hospital robe as a symbol of the battle for sustainability.
Two small robes that Juliana wore during her hospital stay were kept by the author. One of these robes has become a symbol for better things and is a part of their daily routine. Juliana still wears the robe for breakfast before school, and it now serves as a makeshift apron for her. Jessa, her younger sister, uses the other one.
The author could have discarded the robe, but found it wasteful. Instead, they appreciate the answers they received during the hospital stay, even though no parent wants to know their child has Angelman syndrome. The author is appreciative of the early diagnosis for Juliana, who was diagnosed with AS when she was barely 2 years old.
Over the years, the robe has taken on a new meaning. It is no longer just a piece of clothing but a reminder of the beginning of the author's family's journey with Angelman syndrome. The author plans to keep the robe around as long as possible and find a new life for it after Juliana grows out of it.
In recent years, the Angelman Syndrome Foundation has published new guidelines for the care of children with Angelman syndrome. The author finds comfort in these resources and the progress being made in understanding and supporting individuals with AS.
The author's world changed significantly when Juliana was admitted to the hospital. But through it all, they have grown stronger. The author and their husband are now better versions of the frightened couple they were during the hospital stay. They have faced challenges head-on and have emerged more resilient and compassionate.
The robe, which was meant for a 2-year-old, will not fit Juliana for much longer as she is now 12 years old. But its significance endures, serving as a testament to the family's journey and a symbol of hope for the future.
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