When I first wrote my blog Curmudgeonly Mother, I did so because writing was very cathartic for me. I was an English major in my first years at college, quickly realizing I would likely not find a fruitful career path in public relations so I changed course to Biology, then went on to become a Physical Therapist Assistant. Those paths I chose along the way have helped me through my personal life and career in more ways I can remember. I always loved to write, and loved it even more when my high school English teacher, Dr. Simmons, made us painstakingly peer review our classmates work over and over again. The writing came in handy numerous times for me as an adult student writing term papers and Capstone projects for my Bachelors and Masters degrees, but also came into play when I wrote procedural documents, program status reports for executives, and even when I created training sessions on project management and disability awareness. As for Physical Therapy, that was one of the most rewarding jobs I had experienced to that point in my life. I absolutely love helping people, and as a PTA I was able to do that every day of my career. Little did I know how valuable my training as a Physical Therapist Assistant would be to my role as a mother.
Being a mother of a child with disabilities takes you on journeys that you could have never imagined before. Those journeys are not strictly medical related though, they take you on twisted paths of human resource management, accountability, humanity, empathy, frustration, exhaustion and endless uncertainty. My background in medical training provided me with much better understanding of technical lingo when things were happening to Joseph. I can’t tell you how many times I told doctors “You can use the big words, I understand what you are talking about.”
Having recently switched to working for 2 different employers within the last 6 months, I have had to revisit painful memories about my labor and delivery with Joseph that led to his current disabilities. New co-workers and peers usually feel uncomfortable, literally squirming and ask "do you mind me asking what happened?” When I tell people the story, they get very sad, some have even cried as I explain to them what happened. Then I start feeling bad because they are crying and then I end up comforting them. I really do not want people to feel sorry for me, I don’t want them to feel sorry for Joseph, I want them to gain a greater understanding of a world they may not know anything about. I want them to use that knowledge to make a conscious decision to use that information for good in this world. I am of the mindset that education is of utmost importance and if I am given the opportunity to increase awareness and understanding of people with differences, I need to take advantage of it. So if they take that and merely hold the door for a parent juggling an armful of medical equipment and pushing their child in a wheelchair, than I think the world is incremental better.
There is one thing that almost everyone says when they hear me tell Joseph's and my story and I have not yet figured out how to respond to it. People are always telling me how “strong” I am to deal with everything "we've been through”. I really do not know how to respond to that comment because when dealing with it-- the uncertainty and the frustrations, the incompetence and ignorance, all you feel like you want to do is throw your head back and scream at the top of your lungs. Maybe one day I'll figure out the right response to that comment, but now my response is “as a parent, you just do what you need to do for your child.”
Revisiting Joseph’s birth story over and over recently led me to pick up the proverbial pen and start writing again. Also, Joseph turns 15 this month. Just writing that sends chills through my body because the neonatologists in the NICU gave Joseph a 10% chance of surviving just the transfer to the higher skilled NICU at a local hospital. And here he is, almost 15, with his moustache and all!
Recognizing my own mortality and maturity, I feel now is a great time to help break down all the aspects of what it means to be Joseph and his caretakers. My hope is that I can bring an increased awareness, understanding, and compassion to the world many of us live in, and to ease some of the fear of the unknown.
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