Dear Duchenne Boy,
There isn’t a day that goes by when I don’t wish someone had written me something similar. No matter how many loved ones are near, adversity is an unavoidable reality you must face alone. No one can save you, except yourself. I’ve lived too long for this disease, and when you’re past your prime, it’s inevitable to become a parent as well.
Son, every second of every minute is the moment to realize that when the battle gets tough, trying your best won’t be good enough. You’ll have to do harder than your best, even if it seems impossible. I know you believe life to be unfair, but dignity, pride… these things don’t matter anymore in the future. Gratitude will be found in the most basic abilities, while lesser evils manifest rewards. Anger is only productive if you harness its energy in the right direction.
One day, your caregivers will take their frustrations out on you because of the heaviness of your care. It will be upsetting and bring you down, but I say unto you, forgive, for you are more. Don’t compromise your care for fear of their reactions. Doing so will only make things difficult in the end, so overcome for their sakes.
We are not one of them. They validate their existence through events and physical activities, and we define ourselves according to our hearts. They call us angels, pioneers, and warriors, and all we want is a little normalcy. However, we were never meant to live the simple life.
Remember that we are not heroes, but they will see us as one. If you choose this path, encouraging them will be your responsibility, and not through your own achievements. They will look to you for guidance and a sense of motivation, but you will show them to be their own heroes and heroines. Your purpose is to share the knowledge you’ve gained to secure the survival of our next generation.
Girls will break your heart. I promise. But if you ground yourself with an ideal, a foundation, you will understand that love is to be more afraid for her heart than your own. You were afflicted without choice, so appreciate the freedom of it, even in others. The world owes you nothing, but you owe it to yourself to always be true.