It’s hard to believe that 30 years have passed since the day my sister, Chavon Hodges, entered my life. I was eight years old, and what I remember most is her doll-like appearance – a head of thick, black curls. She was perfectly still, except for those observant eyes that seemed to take in everything.
At the time, there was no diagnosis; eventually, they called it “unspecified muscular dystrophy.” Chavon’s muscles were weak and her cry was quiet. In the early days, she was not able to swallow well, so she needed a nasogastric (NG) tube. I remember watching my mother thread the small tube into her nostril, down to her stomach, with such precision and care, and probably a lot of fear. I never imagined that 26 years later, I would be performing the same careful procedure on my own newborn son, born with the same condition, which we later learned was congenital fiber-type disproportion myopathy.
On Chavon’s birthday each year, April 22, I try to focus not on what we have lost since her death in 2012, but instead on what we gained during her 27 years in our lives.
Chavon was a know-it-all; her confidence came from being smart. At the time of her passing, she was working on a doctorate in bioengineering, fueled by her love of technology and her lifelong exposure to doctors and medicine. She had completed a bachelor’s in bioinformatics and always looked for new ways to learn and to show us what she knew. Watching her shine academically helped me to understand the unique place we are in historically – people with disabilities, now more than ever, can thrive and engage with technology to participate and contribute to society. She was in a wheelchair, and her body was sometimes her enemy, but her mind was her tool to success.
Chavon was funny and irreverent; she found humor in uncommon things. We spent so much time laughing that I forgot sometimes that things in her life could also be sad and challenging. She was bullish about pushing through the sadness to live a life that was meaningful. As John Green writes in The Fault in Our Stars, “Some infinities are bigger than other infinities,” and Chavon packed more into 27 years than some do in 100. She showed us how to live with purpose, how to use our time rather than waste it. She recognized her mortality and refused to sit in a room and let life pass her by.
Chavon was our teacher, and compassion was the key lesson she taught us. When my son Richie was about a year old, he met my oldest niece for the first time. She entered his room enthusiastically and began playing with him. He had a tracheostomy and was connected to a ventilator, none of which she seemed to notice. About a half-hour later, she observed aloud, “Hey, there’s something in his neck.” Initially, she had only seen her cousin – not his medical equipment or his disability. That is the legacy Chavon left for our family – the ability to see past the disability or the equipment and connect with the person.
Chavon wanted so much from life, but she gave so much more. Everyone who knew her was inspired by her. There’s a hole in my heart, the size and shape of my baby sister, but I try to fill that hole by paying forward a bit of what she gave to me.
Nikki (Charisse) Montgomery has served on the ProMedica Toledo Children’s Hospital Family Advisory Council since 2013. In addition to being a professional writer and editor, she is pursuing a graduate certificate in patient advocacy. She is a hospital volunteer and a parent mentor, and she volunteers with Muscular Dystrophy Association. Nikki and Richie are subjects in ProMedica Toledo Children’s Hospital’s Beyond the Frame photo exhibit, on permanent display inside the hospital’s main entrance hallway. Nikki is a regular ProMedica HealthConnect blogger who hopes to inspire and connect with others through the Teachable Moments series. Follow her on social media @madvocator.