There’s a small decoration that sits on my desk. It reads, “begin each day with a grateful heart.” Some days I stare at it and smile as thoughts of happy memories flood my mind. I hear my kids laughing and playing. I picture family vacations and experiences that we’ve shared together. Some days, I feel such intense gratitude for my life that it overwhelms me. Tears fill my eyes, and I thank God for the beauty that surrounds me.
Other days, if I’m being honest, that same decoration stares back at me in a different way. A way that somehow brings feelings of guilt and failure. That same mantra that seems to motivate me some days, almost haunts me other days. It’s like an impossible expectation that I just can’t live up to. As a perfectionist, I tend to be very hard on myself. Sometimes the perfectionist in me can turn a wonderful sentiment like this into something that can cause me to feel like I’m not doing enough. I’m just not grateful enough, happy enough, patient enough… and the list goes on in my mind.
Begin each day with a grateful heart? Every single one? Some days are just too hard to find joy in my circumstances. I try so hard to focus on the good, but sometimes I can’t help but feel sorry for us. Our lives are just so different from everyone else’s. Aside from my Duchenne friends, I often feel like no one understands my deep thoughts and fears. As they say, until you’ve walked a mile in someone else’s shoes, you just don’t understand.
I’ve since learned that gratitude is not defined by a bad day or a bad mood. A bad day doesn’t change my heart; it just changes my mood. Emotions are difficult to control, and I’m a firm believer that emotions should be felt and dealt with as they come, not ignored. Duchenne is an emotional rollercoaster, and some days, all I can do is hang on, but that doesn’t change my heart.
Both types of days are important. Without the bad days, I wouldn’t cherish the good days as I do. Without the painful emotions that come with being a Duchenne parent, I wouldn’t get to experience the wonderful ones as deeply. I wouldn’t have such fierce gratitude for my children and every single day I get to spend with them.
I’ve learned that a grateful heart does not equate to a constant grateful mood. I always have a heart full of love, gratitude, and appreciation – even on the bad days. When my son stopped walking, I felt such sorrow for him, but I also felt grateful that he didn’t have to worry about falling anymore. I felt compassion, admiration and a kind of love for him that grows with every breathe I take. Along our journey, I’ve realized that all of the hard moments eventually end up leading to beautiful ones.
Every day I work to have a positive and grateful attitude, but thanks to God’s love and kindness, I already possess a grateful heart. No matter what my future holds, I will always cherish being a mother. I will treasure every second I get to spend with each of my children, even in the moments of pain and sorrow. I will relish in their smiles. I will memorize the sound of their laughter. They are what makes me who I am. They are my purpose, and because of them, even if my days don’t begin with a happy mood, they always begin with a happy heart.
I watched a video once of a young boy who was unable to walk since birth. He lived in a poverty-stricken country with no access to the equipment he needed. He had learned to crawl, pulling his legs behind him in the dirt. What struck me about this boy was his beautiful smile. He struggled every day to drag his body through the dirt, and yet he was smiling. The video continued as the boy, around nine years old, was given a manual wheelchair. I will never forget his reaction. Happy tears fell from his cheeks as he thanked his gift-givers incessantly and climbed into the chair. He smiled from ear to ear as he wheeled around for the very first time. It changed my perspective on gratitude forever. He may have been grateful in that moment, but his heart was already full of gratitude, even before he was given that wheelchair.
Gratitude is not determined by what we have or what we don’t have. It’s determined by what’s in our hearts. My mood may reflect bitterness or annoyance sometimes, but my heart doesn’t possess any of that. My heart is full of purpose, love, and joy. My pain is not a punishment, it’s a powerful perspective changer – one that has affected my heart for the better. I’m surrounded by a kind of love that some people never get to experience.
I may not begin each day with a positive mood or a grateful mindset, but every single day I wake up with a grateful heart. Every day I feel my heart overflow with compassion, gratitude, and unconditional love. Some people may see my circumstances as too painful to find joy. Some may pity my role as a Duchenne parent. But believe me, if they saw my heart, they would only envy me because the kind of love and gratitude I get to feel every day is simply indescribable.