A Different Boat

In highschool I found a song from Lifehouse called Storm that really spoke to me.  Anytime I had a bad day, I'd listen to this song and pour my heart out to God. .  "How long have I been in this storm? So overwhelmed by the ocean's shapeless form Water's getting harder to tread With these waves crashing over my head If I could just see you Everything would be all right If I'd see you This darkness would turn to light And I will walk on water And you will catch me if I fall And I will get lost into your eyes I know everything will be alright I know everything is alright I know you didn't bring me out here to drown So why am I ten feet under and upside down Barely surviving has become my purpose Because I'm so used to living underneath the surface If I could just see you Everything would be all right If I'd see you This darkness would turn to light And I will walk on water And you will catch me if I fall And I will get lost into y...

Caring for a medically complex child often feels like a game of whack-a-mole. The first two years of Wesley's life were mostly filled with hitting the feeding "mole." We battled with nursing, growth, vomiting, oral sensory issues, etc. as our main focus for two full years. Yes we followed up with many other specialists and had many other issues we dealt with over those years, but the prevailing issue was feeding. Then just as he started growing and stopped vomiting, just as we felt like the feeding mole was finally pushed down, up popped the seizure mole. Our focus shifted to managing seizures instead. We spent the last year pounding on the mole fighting to find the right medication doses, identify triggers, understand emergency procedures, etc. And while we hit that seizure mole, the feeding mole started sneaking back up slowly as Wes stopped tolerating his nighttime feedings and stopped gaining weight. Just as we started getting seizures controlled enough to be able to...