Disability became a part of our every day life at the birth of our daughter, Raegan. Born with a rare brain malformation, she was given only weeks to live. It is now nearly 20 years later and Raegan continues to thrive in her own way. Although profoundly disabled with both physical and intellectual challenges, Raegan’s unique life has paved the way for our family to have a deep understanding and love for a vulnerable population often underserved. Our family has developed a strong sense of devotion we never knew possible. Creative solutions have become commonplace in an uncommon life.
Housing and Health
Inaccessibilty has been a tremendous roadblock throughout Raegan’s life. Early on, other families similar to ours advised us to “make your home your haven” as leaving the home would be a larger challenge as each year passes. They were spot on. As Raegan, grew older and larger, keeping us all safe and secure has become a significant challenge. We’ve encountered inaccessible buildings and sites at nearly every corner, including medical offices with defective doors or elevators. Our own 1895 home, is challenging to navigate and alter with no access to funding to make needed changes. When inquiring about programs, we were told of years long waiting lists and relied upon the generosity of family and friends to construct an accessible ramp to our home and specialized seating for our vehicle. Although we have many loving people in our lives, most of their homes are unaccessible to our daughter. We don’t receive many invitations these days, as people don’t expect us to attend. Feelings of isolation and even depression have a negative impact on our health. Now that we are also 20 years older, my husband and I need to be extra careful in how we move our daughter. Both of us have had spinal fusion surgeries to resecure weak backs that must still lift an adorable, heavy load. We have founded, The HeartGlow Center, a 501c3 public charity to support family caregivers and honor the lives of families with special needs.