Accepting, not embracing our life with Transverse Myelitis: a mom’s point of view

I remember the first few weeks after my daughter, Erica, was diagnosed with Transverse Myelitis. I thought I was the only person in the world going through this experience. Inflammation, can’t an antibiotic take care of that?  If only I had someone to sit down with me and explain the life-altering change we were about to go through. This feeling, even nearly 3 years later, is so isolating. That is why it is so important for me to reach out to other families.  I have learned so much from other parents and adults living with TM. I have also made wonderful, lifelong friends. I relate to them far more than with my childhood friends.

One night, about a week into our hospital stay of six long weeks, I had to get out of the room.  I couldn’t look anymore at the wheelchair staring at me. It was a reality check for me every morning. I had settled Erica for the night and asked the nurses to check on her. Before leaving the room, I asked her if I could bring her anything from downstairs. I was going for a Coke. She looked at me and said, “yeah, Mom, can you bring me a new pair of legs?” Wow, the question knocked the breath of me. I went and cried for what seemed like hours over that request. I made a decision at that moment, to find some way to move forward with what was handed to us. I went back upstairs and told her that I found this really bad pair of legs in the waiting area, but they were extremely hairy and had ugly shoes. That comment made her smile and we laughed and cried together. I didn’t know what else to do but joke. My 12 year old daughter who lay there paralyzed from the waist down wanted new legs. She was an enthusiastic dancer and wanted to try out for cheerleading. How did this happen and why?

I wanted to share that story because I remember thinking how do we get through this? Time and comfort from other parents and others living with TM. That is what has helped me. I finally met the point of acceptance sometime this past summer. I convinced Erica to go to a day sports camp and after begging and pleading, she went. I walked into the gym that first day without her knowledge and I saw her smiling. It was a smile I had not seen in over 2 years. She was playing basketball, which was a favorite pastime for her before TM.  I knew she had accepted life and I had to as well.

I met a family our first year at SRNA camp. I was amazed at how they acted, just happy. I, of course, was so angry at life and what we had lost. That was October 2011. This past summer at camp, we were back with that same family and the mom commented on how much I had changed. She was glad that I wasn’t angry anymore and really saw a difference in me and my whole family.  I don’t embrace what has happened, and trust me I have my moments, my days, even my weeks.  I still get mad when my daughter can’t just jump in the car and go out with friends. When even a trip to the mall is such a big event or seeing her sitting on a towel at the beach instead of acting like a teen should, I cry.

When I started writing this blog, I had no idea what I wanted to say. Erica lost complete function in less than 30 minutes and our lives changed forever.  I wanted to share how we have moved forward.  To have acceptance of our life changes has been freeing. I will never embrace what my daughter has had to miss out on, and I grieve for her loss. I do feel as if she and others have been completely robbed of so many things. However, this has opened so many doors for us. Erica is now in her first year playing basketball and can’t wait to go to college. She talks of her future and I know that she will accomplish all the goals she sets. From the beginning we have had the attitude of “I can do everything that I did before, just differently.” That is an attitude that, as a mother, is hard to keep sometimes.

I still don’t have answers to how and why and I know I will never get those. I do know that having TM has put us on another path in life.  I can’t tell her anymore to work harder and she can try out for cheerleading next year or that she will dance at next year’s recital, but I can tell her that life holds more for her than that.

 ~ Jamie McDaniel, mom of 3, oldest diagnosed with TM at 12 years of age