3,285 Bonus Days

  

  Today is my son, Noah's ninth birthday.  I know I'm biased, but he is kind of special.  He has lived more than 3,285 days longer than any doctor expected he would before he was born.  When I was pregnant with him, we discovered through ultrasound that his brain and spinal cord had not formed properly. He had severe hydrocephalus (fluid accumulation in the brain), multiple malformations of his vertebrae (and some were apparently missing), an Arnold-Chiari III malformation of the skull and an encephalocele (a "bubble" of cerebral-spinal fluid) high on his neck, and a brain malformation called Schizencephaly, which is a break or cleft in the outer brain structure.  He was also missing several interior structures, including the corpus collosum and septum pellucidum.  We were told all this when I was 20 weeks pregnant.  The only part that made any sense at the time was the prognosis--death at or probably before birth.  The term the doctors used for this combination of defects was "incompatible with life."  We were told there were options....

   Fast-forward nine years, through three months in Neonatal Intensive Care, multiple surgeries, bones growing where no bones had been, many days we thought we'd lose him, more days in Pediatric Intensive Care, six different hospitals, seizures and panicked ambulance rides, therapy and small victories, more medical equipment than I can keep track of, more medical training than I ever thought I'd have, and more joy than I ever thought possible....

   My sweet miracle boy is nine!!

   So this post is to you, Noah.  They said you wouldn't survive--you did.  They said you'd never breathe on your own--you did.  They said you'd never hear (they still say the tests show you're deaf!)--but you hear perfectly.  They said you'd never sit up or crawl or walk--you do.  They said you'd never be able to learn--you do.  They said so many things about your limitations--and you blasted through every one with that huge smile on your face.  You are my trooper, my tough guy, my sunshine boy, and I am blessed to have had you in my life for these past nine years!