#690 Singing in the Rain

Custody

Cheryl, Bryson's grandmother, shares her journey of becoming his primary caregiver. She and her husband took custody of Bryson due to his parents' struggles with managing his complex medical needs. Cheryl explains, "His parents were just struggling to keep up with the medical complexities that he had. And so he came to live with us for about a year." 1 Bryson, diagnosed with type 1 diabetes and other conditions, has been under their care since he was ten, and they have been deeply involved in his life even before obtaining custody 2.

   

Daily Care

Managing Bryson's daily care involves a structured routine to accommodate his multiple health conditions. Despite his cognitive delays, Bryson remains joyful and unaware of his differences, enjoying activities like knock-knock jokes and school 3. Cheryl describes the challenges of managing his autism and diabetes, noting, "Autism on a day in and day out basis, as far as his quality of life and what he sees, it would definitely be autism." 4 His diabetes management is particularly crucial, with Cheryl achieving impressive control over his blood sugar levels 5.

   

Future Concerns

Cheryl expresses concerns about Bryson's future, particularly regarding his mitochondrial disease, which can be progressive and life-limiting. She hopes to manage his diabetes effectively to prevent complications, stating, "My goal is, when he's 50 or 60, for him to never be in a position where the diabetes, something that we could control, caused any complications." 6 The uncertainty of his condition, coupled with the lack of a clear genetic path, adds to the complexity of planning for his long-term care 7.