March is Cerebral Palsy Awareness Month. This year I wrote a letter to cerebral palsy. The purpose is to raise awareness about how cerebral palsy affects the lives of parents who have children with the disorder. I hope one day my son will be able to write a letter telling the world what it is like to have cerebral palsy, firsthand.
Dear Cerebral Palsy,
You entered our lives four years ago, and most things have not been the same since. The adversity you bring is pervasive, but I force myself to see you as an opportunity to learn and grow.
You are an indefinite source of challenge and struggle, but because of you, I am learning to be fulfilled by unexpected, fleeting moments of happiness.
You’ve forced me to face frightening, complex and ambiguous information about the thing that matters most to me, but because of you, I am learning to stand in the space where answers don’t exist and solve problems anyway.
You’ve dared us to give up, time and again, but it is because of you that I know I’ll keep going no matter how tired I am, how much pain I’m in, and how difficult it is.
You are the reason why my son can’t tell me his daily needs and deepest wishes, but because of you, I developed the ability to know what every nuance in his behavior means, which in turn has made me feel more connected to him than I ever thought possible.
You’ve caused us to be isolated much of the time, but it is because of you that our lives have been touched by some of the most kindhearted, devoted people who walk the earth.
You’ve made me dread the possibility that some people may be unkind to my son for reasons he can’t control and does not deserve, but it is because of you that my heart is open and I give everyone a chance.
You are the reason why people stare at us in public places and ask insensitive questions, but because of you, I no longer stare at individuals with disabilities. When I speak to them, I look them in their eyes, smile warmly, and say, “Hello.”
Seeing infants, children and adults you’ve touched has made me question basic fairness in life, but because of you, I see something alive and tender inside each person that cannot be taken away from them nor completely hidden.
Some may wonder what it is about you, cerebral palsy, that can make life difficult. The answer is simple, but wide-reaching. You take away volition. You make it nearly impossible for some people to walk, stand, sit, hold their heads up, move their eyes, swallow food, communicate with the world, and even lift a finger.
But it is because of you that I know one of the most meaningful things in life is companionship—someone you care about deeply—and being there for that person no matter what life throws their way. Because of you, I know as long as I am breathing, I will be here in every moment possible to share this journey with my son. And despite whatever you throw our way, we will find a way to laugh, love, and live our lives to fullest. That is something you cannot take away.