It’s day 26 of our #DisabilityRightsInBlack series and Monique Green is sharing her perspectives on parenting with a disability! A former Nurse Practitioner and skilled advocate for individuals with HIV, Monique has made an indelible impact on her Houston community and is now a stay at home mom actively raising her vivacious 13-year-old daughter Lola. As a single mother with ALS, Monique shares her stunning story below through instances of interdependence and moments of introspection. Check out Monique’s incredibly moving message about motherhood and mindfulness.
Mom: The Most Important Label
Lame (literally). Impotent. Invisible. Irrelevant. These are all labels I have placed on myself at one point or another as I learn to live as a person with disabilities. My TRUE labels include, Black woman, daughter, devoted single mother, former nurse practitioner, reality TV and cupcake addict. Up until a couple of years ago, I had spent most of my time as a health professional, caring and advocating for persons with HIV. I had always had a heart for socially marginalized and health disparaged populations. I hated to see valuable members of society treated as if they were less than due to circumstances beyond their control. Now, here I am bearing the weight of some of the same labels placed on my former clients. Almost 7 years ago, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS). ALS/Lou Gehrig’s disease is a progressive neuromuscular condition that leads to loss of the ability to walk, move, speak, and breathe. Life expectancy is usually 2-5 years after diagnosis. I have defied these odds, but not without significant disability. I can no longer walk unassisted, have limited use of my arms and hands, and noticeable speech impairment.
My ALS diagnosis came as a complete shock and was beyond devastating. My first thought was my daughter, Lola, who was 7 at the time. What did my diagnosis mean for her? Was she going to be without a mother? How would I take care of her as my health declined? How would I make enough memories to last her through adulthood? The answers: I don’t know, but we’re working on it! The role of Mom has been the most important of my life. I reveled in it. I’d been hands on from day 1. We were road warriors… school activities, swim practice, Girl Scouts, birthday parties…you name it, we were there! I had about 3 “good” years after diagnosis before my progression became disabling. We proceeded; business as usual. The first thing to change was my mobility, as I needed to use a walker. I stopped getting out of the car for school drop off and pick up. This wasn’t so bad, as Lola was getting bigger and was more independent. Then, I couldn’t drive at all. I had to delegate that responsibility to family members. This was a huge blow, as I treasured our car rides and sing-alongs. Next came the time for me to stop working. Enter the aforementioned labels. I had become essentially ineffective…or had I?
Grieving is a continuum. As I lose abilities, I grieve, adjust and move on. I will always be a mom, and no one can take that label away from me regardless of my physical abilities. My daughter and other family members have become my muscle. I use assistive devices as much as I can. As I lose my speech, I’ve become a great listener. I parent from my couch, wheelchair, or wherever I find myself perched. I have almost 40 years of knowledge and wisdom to impart on my daughter. Even when I can no longer speak, I will still have a voice. I will always be Mom.