My daughter Quincy was diagnosed with a rare genetic brain disorder called lissencephaly, on Halloween of 2011, 5 months after she was born. Lissencephaly means “smooth brain” and causes significant developmental disabilities. It is of unknown cause and although it can be hereditary, it was not in Quincy’s case, just a mutation on one of her genes that happened sometime between 9 and 12 weeks gestation.
I sat down with my youngest son, Max, and interviewed him about life with a mom whose has *multiple invisible disabilities and brother who is a paraplegic and lives life in a wheelchair. Max was thrust into a caregiver role basically from the beginning of his life and this role was amplified four years ago, as our lives were forever changed when our eldest son was catastrophically injured in a pedestrian-vehicle incident.
The overarching theme we hear from caregivers is loss of self. The Arch Foundation's mission and vision is to provide support for caregivers to find balance in their own lives and a community to share the ups and downs of managing the life of a loved one with diverse abilities.
The hardest part of being a caregiver is the long term management of running on empty, being sleep deprived and at the same time having to perform critical and potentially life altering cares that keep your loved one alive.
John and I have experienced so much in our crazy relationship; happiness, sadness and heartbreak! But as weird as this sounds, I now have a love/hate relationship with our third wheel (SCI)!
Caregiver Corner Series, Ann and George: Yes, SCI does often rear its ugly head, for some its daily, for others it’s less frequent. But none-the-less, it has given George and our family enriching experiences and new friendships. The fatigue of this injury is EXHAUSTING, but I consider us stronger for keeping on in redefining possible!
Since we began this journey a little more than 2 years ago, we have met so many beautiful, selfless caretakers and I have noticed a significant gap that I hope The Arch Foundation can fill.