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!

Tough Questions

As most of you know, in February my brother Tim was severely injured in Afghanistan.  He is an explosive ordnance tech and stepped on an undetected IED while doing a sweep.  He lost both legs and one arm, and his other hand was shattered.  He is recovering amazingly well, but the first couple of months were pretty tough.  Once he was out of ICU, we took the boys to visit him.  Caleb, who's seven, had a lot of questions but seemed to handle everything pretty well.  We had no idea how much he was impacted until several weeks later.  We were talking about Rob's upcoming deployment, and Caleb got very teary-eyed.  We asked him what was on his mind, and he asked if Daddy would lose his arms and legs in Iraq.  We assured him that Daddy would be fine, because God would protect him.  "But God didn't protect Uncle Tim!" he sobbed.  Talk about a punch in the gut.  I took a deep, rather shaky breath, and we had a good, long talk about God, prayer, and divine protection.  God did protect Uncle Tim, we assured him, because he could have died from his injuries.  And if Rob were to get injured in Iraq, we trust that God would take care of him, and our family.  We know this because we've seen His provision in our lives in the past.  We've seen miraculous healing in Noah and watched him surpass every medical expectation.  We trust that God does work all things together for our good.  The harder truth is that God doesn't always "work things" the way we think is best.  The better part of faith is believing that the One who sees the big picture has our best interests at heart, even when the small view is terribly messy and painful.  For those we know whose desperate prayers were answered with a "no," who lost husbands and fathers and brothers, are they any less cared for by God?  As difficult as it is to see with our human eyes, we must trust with our hearts that the answer is of course, no.  God cradles those in the palm of His hand, and holds them close to His heart.  This is the God I know. 

   These are things not easily explained to a seven-year-old.  The irony is that he probably has an easier time accepting them than I ever will.