By H.N. Williams
I cringed as I was making my way down the hill. We were descending down an even steeper part of the decline and already I regretted not bringing both of my walking sticks. I could feel my feet slide as I grasped onto my one stick and gently reminded Danny to slow down just a tad bit so that I didn’t fall. Danny gave a slight nod and proceeded to walk slowly with my other hand holding onto him. I tensed up as I felt my feet slide ever so slightly on the gravelly walkway as onlookers curiously watch us.
I was supposed to play the role of capable mom helping her son find his camp group but instead Danny is helping his mom avoid another fall. The role of caretaker has become blurred while raising my son as a single mother with a disability.
No, we weren’t hiking on a rigorous trail or walking along the beach or even a taking a stroll around the park. It was a simple task of dropping off my son, Danny, for his first day of summer camp. Once again it has morphed into something more.
This was not how it was supposed to go. Danny and I were going to chat about what he looked forward to at spy camp, check off the list of supplies to bring and talk about all the new friends he would make. But instead, it’d become an obstacle course to make our way down a steep driveway and then onto a hilly field where all the other campers were gathering.
It has been seven years since I was officially diagnosed with Muscular Dystrophy. The news came two years after Danny was born and three years before my husband left me. I sometimes think back on how different life was before the symptoms appeared. I lived a relatively normal life, little drama, with dreams of an idyllic life that would include a loving husband, two wonderful kids and a home we could grow old in.
After fifteen years with my husband and a beautiful son we shared together, I couldn’t imagine life being any different. However, life changed dramatically in two years time. After the divorce, my son and I were living in a different home raising him on my own.
In the beginning, there were a lot of adjustments to this new normal. I became a single working parent, juggling the demands of a professional career that required travel while raising my sweet boy. I took on all the responsibilities to keep us afloat. Days were jam packed. I had to toggle back and forth between work mode and mommy mode trying to find sanity and balance in each hectic day.
On top of it all, accepting my disability, which is neither curable nor predictable, but a disease that certainly left my muscles growing in a weaker state year after year was hard. Slowly my ability to jump, run and play with our growing son was eroding. There was no sugar coating it. It was a very tough adjustment.
As difficult as it was to accept the physical aspects of this disability, the mental struggle was just as daunting. I wondered, how do I raise my child properly when I can’t take out the garbage without potentially falling? How can I be a good mom if there are days I can barely get dinner on the table because my legs are too tired from a long day at work? How can I do it all when I can’t even walk up to my own front door? How can I be a good mom if I struggle doing some of the most basic tasks?
All the doubts and insecurities whirled relentlessly, beating around my head those first few days, weeks and even months. I felt buried under the weight of it, even as I was trying to keep our home in order, pay our bills and take care of Danny.
However, it was that focus of taking care of our son that helped me force back the insecurities. I knew I didn’t have the luxury of doubting myself because I had someone depending on me. I was determined to give Danny a sense of stability and calm in the midst of all the chaos and heartache. This determination became my focal point and it drove me to face the challenges each day presented.
I had to tackle the doubts head on and figure out how to do things my way. My mantra became, if I can’t do it this way, what will work for me? It became my daily challenge where I found new creative ways to tackle the tasks in front of me.
Taking out the garbage meant using a walking stick to brace myself down the slope of the driveway. Making dinner after a long day meant either taking quick breaks in between cooking or ordering takeout. And getting to the front door meant walking up on the lawn instead of navigating the steps of the walkway. I had to figure out what worked for me and practiced until it was second nature.
Slowly, as the days passed, I realized the list of things I couldn’t do began to shrink while the list of things I could do expanded. As my accomplishments grew, I found my confidence growing as well. With it, came the acceptance of who I am and what I can and cannot do.
It has been a rewarding lesson that helped me realize how truly happy I am and what I can accomplish in my new life. I hope to pass this valuable lesson to Danny and help him grow up to be a strong person both inside and out. I hope his future is bright and he will be ready to tackle all the challenges that lay ahead of him.
But for today, we are going to figure out how to get down the driveway one step at a time.
If you want to learn more about Muscular Dystrophy or donate to research efforts, check out MDA's website.If you are a parent with a disability, we’d love to hear your thoughts in the comments.