Madi's Scar

Tonight I sat rubbing Madi's back as she settled down to sleep.  I was overwhelmed with the feeling of how lucky we are to have her in our lives; of how blessed I am to have her as my child.  When I got to the scar on her back, I could not help but think all that her it represents; the neural tube defect, the nerve damage, the hydrocephalus, the Chiari II malformation, the surgeries, the lack of function, the paralysis.  But at the same time, none of those things define who Madi is.  Madi is smart, funny, determined, loving, kind, curious, analytical, beautiful, a charmer, strong, compassionate, giving, and absolutely amazing.  It makes me sad when people stop and stare.  It makes me sad when they don't look at the person who she is, but instead look at the equipment that she uses.  The equipment is nothing.  Her equipment and her disability do not define her.  My prayer is that Madi will grow up strong and confident, showing the world that you are not your disability.  My prayer is that Madi redefines spina bifida, not only for herself, but for all those that come after her.