Having a disability is hard. Caring for three children, also with disabilities, is harder. But we are resilient, and we move forward. In spite of the almost daily obstacles being set in our path, we refuse to accept a lesser life because of our conditions.
Too often I hear comments from able-bodied people claiming it’s easy to get resources when you’re disabled. They just throw them out like candy, right? Well, that must mean my son’s epi-pen for life threatening allergies must not be an essential. Or that asthma medication. This is the message I’m receiving, and I wish those people could see my truth.
I cannot be a mother and care for my kids when I cannot care for myself either. Before I was approved for my electric wheelchair, I couldn’t leave the house. No grocery store trips, no doctor appointments, I was barely mobile in the house. I was falling all the time, couldn’t cook meals, clean the house, or even bathe myself. Meanwhile, my three children who needed more help, were receiving far less.
One of my children has ADD and auditory processing disorder. Getting this diagnosis alone was difficult. Everyone refused to do an evaluation. TJC helped us get the assessment, so she could receive treatment.
For my son, we were able to get 56 hours of nursing services. This definitely did not get thrown out to us though. We had to fight, and the fight is ongoing. They tried reducing this to 14 hours, and his nurses were outraged. This would be a huge safety concern and his needs would never be met.
Maybe some people look at our family and think we get a lot of help. I’m not really sure how we could live without it though. Four people with different disabilities. Four people who did not choose these illnesses. A family that just wants to retain some normalcy when given crazy circumstances.
I cannot even tell you how many times my family’s coverage has been threatened. People are constantly trying to take it away. We work so hard for these necessities, just for them to be lost so easily.
I have learned to advocate for myself and have found those, like TJC, who will support me. Together, we have taken on the role of informing those working for the health care system about that system. These people are supposed to be the experts, not me. If that’s what it takes though, educating my own providers about what they offer, then I’ll do it.
My life and my children’s lives are of no less value than anyone else’s. We are a family, we are your neighbors, we are your friends, we love, we cry, and we fight for our rights. Because of this, I can be a mother and my kids can grow and to be their best selves. We are so thankful for our resources, as they make life possible. I just hope that one day my kids won’t have to similarly struggle to maintain this support.
Christel is one of the 1.5 million people benefiting from TennCare. If TennCare has helped you, tell us your story! You call us at 615-846-4701 or share your story here.