Having disabilities in the family is complicated. My younger sister has hydrocephalus, a neurological disorder in which her brain produces extra fluids that crowd her brain. Her hydrocephalus required repeated brain surgeries throughout our childhood and numerous therapeutic interventions to remediate a slew of learning disabilities and mental health needs. While my sister’s experience is ultimately one of courage and resilience, growing up with such demanding medical needs in the family was both challenging and rewarding.
The most salient challenge was communication. Since my sister’s need for surgery was unpredictable, my parents had to create a protocol for informing our community. Once at the hospital, my mom secured childcare for us kiddos, and my dad summoned our extended family to cycle through the hospital so that my sister was never alone. Another challenge was navigating the realm of support services, which, unless you already work in education or healthcare, is very difficult to comprehend. The biggest challenge of all was maintaining a loving and judgment-free zone through all of the logistics and frustrations. For my parents, having a child with complex medical needs and navigating the education and healthcare systems, all while working full-time and raising other kids… it all wears on you – on your emotional well-being, your mental health, and your relationship.
Despite the infinite challenges, having a family member with disabilities can also be rewarding. My family recognizes – and truly values – how different perspectives bring nuance and depth. We always have an open-door policy at home and lovingly welcome anyone and everyone to dinner. Such a unique family experience strengthened our bond and, to this day, continues to enrich our relationship both within our family unit and outside.
Here are a few lessons that I learned from this experience:
- Humor makes even the toughest situations better
- Appreciate the little things
- A disability does not define; identity is multifaceted and we need to appreciate others beyond their abilities/disabilities
- “Love and kindness” is more than a mantra; it’s an approach to building relationships, even when that may be more difficult because of a disability
- It takes a village: take the help, whether from a friend or a professional. Parents don’t/shouldn’t have to do it all on their own
Having disorders and disabilities in the family makes for a complicated and nuanced experience. While there are numerous challenges and rewards, a family can be left with values and bonds strengthened by their resilience.