I’m a disabled parent who has raised a disabled child to adulthood. Before becoming pregnant, I did not think I was capable of parenting, it was never part of my life goals. I was in my mid-twenties, dealing with intermittent chronic illness that doctors had no name for. I didn’t know how to plan for my life because I could not stay healthy for any length of time. I managed to finish college, not with the degree I wanted, but at least it was a degree. I had enough computer skills that I was in demand around campus as a floater. Not well-paying positions, but not stressful ones either.
When I found myself pregnant, my world turned upside down. I had to decide whether to try to go it alone or to trust someone with whom I had problems. I went with Option B for almost 4 long and painful years. My self-esteem hit rock bottom, I went into a bad depression, but what drove me to get out was wanting a better life for my daughter. I was still too afraid to live on my own, so I found a boyfriend who owned a house and we moved in with him. We were the instant smiling family to the outside world, inwardly, I felt like I sold myself for a place to live. He and I had little in common. I told myself that the important thing was that my daughter was safe and had a roof over her head. I got into a job training program, eventually I had a good job and I was able to move out on my own.
It was terrifying to have everything riding on me. I was so afraid of getting sick. The anxiety was constant. I remember I would allow myself a period to cry driving in the car between work and daycare. That was the only times I was alone. That was my release. As she got older, her needs at school ramped up. I needed to attended a lot of meetings about her behavior issues, about her placement in special education. She needed doctors’ appointments. Work did not like me taking time off for all those things, so there was a conflict because I couldn’t work the mandatory overtime required by my employer. My performance reviews dropped. I switched to another company, lower salary, but flexible hours. I didn’t mind that it was not in a good neighborhood. Then a few months in, I went out to the local convenience store at lunchtime to get an ice tea and wound up in the middle of a shoot-out. The PTSD from that took a toll on my body and my mind. The following year is a blur in my mind. I was in the deepest depression of my life without recognizing how bad it was. I made some poor judgments. Fortunately, I got help in time and began rebuilding my life. One piece of that was acknowledging how toxic my parents had been. For my safety and my daughter’s, I cut them out of our lives.
I found a comfortable job and got my daughter settled in school again. About a year later, I met my current husband Brian and we were married a year later. Not long after we married, I became fully disabled and had to stop working. We had talked about the idea of polyamory. He and I had had past experiences with it, not the most positive, but we felt with the right knowledge behind us and the right supports, it could work. I dated a few people, about 8 years later, I met C.A. We dated for a year, before he moved in. He’s been my husband also for about 7 years.
Having two husbands helps a great deal with caregiving. It was stressful for Brian to have to manage myself and my daughter on his own before C.A. came along. My daughter is grown up, although she still lives at home, she is largely self-sufficient. I am relieved that I don’t have to have strangers in my home. I used to feel like I wasn’t carrying my fair weight of responsibilities around the house, but I see now that I do. I make a lot of the decisions. I keep an eye on the finances. Sometimes I’m the Great Motivator to get Things Done. My job is “to make the trains run on time”.
I’m telling my story after reading the blog entry, “How We Teach Disabled People to Secretly Hate Ourselves“. I understand her fear of bringing a child into the world when she wasn’t sure if she could provide for them, or she could be the parent they needed. I never wound up in a shelter or Section 8 Housing, but I could have. I used my body to get housing. I’m not proud of that. I stayed in unsafe situations because I was afraid of shelters. I went without food so my child could eat. At one point, I sold off everything I could get money for to keep her in diapers. I don’t regret it. Being her parent has been the greatest accomplishment of my life. I am a good parent. I raised a young woman who is kind, thoughtful, creative, loving. Her disabilities are greater than mine, but she makes better choices than I did at her age. You read blog after blog by parents worrying about what will happen to their children after they are gone. I don’t worry. My daughter knows how to take care of herself. She is resilient. I am very proud of her.