This article is dedicated to the memory of my mom Sue, who passed away due to cancer in January of this year. Mom, I know you are watching over me, I love you and I hope I make you proud of me.
Twenty-five years ago, I entered the world, two weeks premature, clinging to life. This is what I wish my mom could have known.
Mom, I know you’re scared of raising a son with disabilities, but you are strong. You’ve got this. You did it with your brother Billy and you can do it with me.
Mom, I know you’re tired of seeing me go through surgeries but I’m strong, I’m a fighter, I’m your spina bifida warrior.
Mom, I know it’s tough hearing the doctors give you facts and statistics, but remember, I’m not a statistic, I’m your son.
Mom, I know the road seems endless, but soon it will turn, and the turn will lead to a better outcome.
Sometimes I think, “Mom, I’m tired of spina bifida, can I please return it for a ‘normal’ body?”
Mom, I know you have no energy left, but could you squeeze a little more out for me? Your little warrior is tired and needs you.
Does spina bifida make me less of a person? No! It accentuates me as an author, as an advocate and as a person.
I always say I have spina bifida, it doesn’t have me. And I believe that strongly — it’s my motto, my life, my story. My story is just beginning, my chapters are still being written, and the end of the story is far from here.
If you’ve taken anything from this, take this one word: fight. Fight like you’ve never fought before, because there is someone out there like me who’s fighting with you and is ready to lift you up again when you think you’ve had enough.
There’s no such thing as too much fight when it comes to spina bifida. I’ve been on the worst end of the fight, now I’m looking towards the positive end of the fight.
I’m on the winning end of a losing battle.
I’m a spina bifida warrior.