When we were kids my older brother was diagnosed with a disorder known as Batten's Disease, which refers to a group of rare inherited neurological conditions that can cause vision loss, progressive motor and cognitive decline, and seizures. I remember being just a kid under 10 and realizing how different our family was from that of other kids. After his diagnosis I suddenly became the older sibling with new responsibilities. That was a role I wasn't ready for, let alone understand.
As the years passed, we cared for him at home. We nervously watched him change, he slowly become completely dependent on assistive living devices in order to survive. It felt horrible not knowing much about his condition or what to expect. By his late teens, he was permanently tube fed and no longer able to walk. In his 20's he got a pacemaker and was placed on a ventilator. He was barely verbal anymore. My sweet, beautiful, amazing brother passed away in October of 2018 he was 32.
My daughter was born just months after his passing. Soon I felt like I'd walked back in time, with a medically complex baby of my own. Battling with her epilepsy amongst other things, I started feeling an anxiety that was all too familiar and I felt it creeping through my family members too. We couldn't keep doing it alone.
We grew up so fast back then. We had no real guide on how to handle the changes or challenges we faced. Not just with my brother's condition, but with our home life, how be kids, how to deal with stress within our family structure, how to help him in case of an emergency, how to communicate in scary situations and work together effectively, how to care for him when home health was unavailable and navigate resources, how to care for OURSELVES in our ever changing "normal".
When it comes to people with disabilities, assistance isn't always there or readily available. Outside of staff shortages in many industries limiting available resources, there can also be a lot of "red tape", a lot of waiting and even denial or overall limitation of services at the end of it all. This makes the need to strengthen support within the home and support service organizations that much more important!
We struggled with obtaining specialized equipment for Evan amongst other things. We changed things out as he grew, adapting to the everchanging "normal" and "MacGyvered" our little world to make things work.
Over the years we've built an incredible family from strangers, neighbors, friends and some incredible people on our care teams. They've been our village and they're what inspired me to form The Wayward Society Corp.
Through my career in crisis/emergency response, specialty healthcare areas and public education, combined with my personal background I compassionately understand first-hand many of the struggles that families can face when caring for members with disabilities, illnesses and pre/undiagnosed conditions and even the effects that it has on caregivers and one's overall support system.
They include things like financial strains, personal isolation, strained/ non-existent support systems, socioeconomic issues, language barriers, fears or intimidation of receiving services, and the struggles within the home such as untreated mental illness in caregivers, burnout, child abuse, drug or alcohol abuse, and domestic violence but seriously the list goes on. By breaking some of these barriers, implementing preventative practices as daily actions and working together with schools, healthcare providers, community organizations and caregivers we can fill many of these gaps and keep our families safer and healthier and empowered throughout their lives.
-Elly Van Mill
Founder and CEO The Wayward Society