Finding Your Mantra as the Parent of a Child With a Rare Disease

Within the first week of our son’s diagnosis with a rare and progressive disease, my husband and I were browsing a Home Goods store.  We were feeling angry, confused, numb and scared whenever we thought about his new diagnosis, and we thought about it most of the time. While browsing, a sign caught our eye, and after reading it, we knew we had to get it. The sign said, “You never know how strong you are until being strong is the only choice you have.” That sign seemed to speak to both of us and tell us that although the news of our son’s diagnosis seemed completely overwhelming, we would be able to get through it. It was a gentle reminder that while we might not realize it, we do have the strength necessary to deal with the disease and all that the disease and diagnosis entailed.

When we got home, we immediately hung the sign up in our bedroom in a spot where we could both see it first thing in the morning and last thing before going to sleep. There were many nights where I was not able to sleep as feelings of fear, what if, anger and helplessness kept me awake late into the night. During these bouts of sleeplessness, I would often find myself staring at the sign and repeating the words to myself over and over like a mantra. Eventually, focusing on those words would calm me enough to help me fall asleep.

Throughout the last four years, there have been many times I have found myself staring at that sign and reading those words over and over. When I am struggling at a doctor’s office or feeling overwhelmed, I subconsciously picture my sign and recite the words to myself. There is something very grounding and calming about those words, and they give me the strength and belief in myself and my abilities to advocate for my son that I need to keep moving forward. They help center me. I know that I can fall apart and I can also feel the weight of this journey.  Regardless of how low of a day I have, I know I can pick myself up and keep moving forward. Even when I doubt myself, this mantra reminds me that I am strong enough to help my son.

That simple sign has given me so much. I feel there is strength in finding your own mantra to hold onto in difficult times. It could be a saying, a scripture passage, a song lyric, a prayer or even a quote — anything that provides a sense of calmness, hope or purpose. The simple act of reciting your mantra or rereading it over and over can bring about a level of mindfulness that helps you focus and center yourself.

Each person is going to have something different that gives them strength and comfort, but the key is to find that something. You will never know how many times during your journey your mantra will help you get through a situation.

For our son, we found a sign that said, “Be Brave Little One.” It has a different meaning for us than it may for other families, but we have filled our house with that saying. We want our children to remember that they are brave in the face of all that our son and his siblings go through due to this diagnosis. My hope is that they get some comfort from it until they are able to find their own mantra and their own sense of strength. Everyone, at all ages, needs something to hold on to and to give them support/comfort during the tough moments.