Time doesn't care that we have a routine, that Xavier has fallen in love with his baby sister. Time doesn't care that Xavier loves going to his play group or is ready to move up to a new swim class. It doesn't care that going to the park is important to X....it just keeps marching on...tick, tock, tick, tock....
Each day seems to go faster then the next, sweeping us off to the fontan..brining us closer to long days and longer nights in the ICU listening to the beeping of machines. Time keeps brining us closer to being separated as a family, Nate and I splitting up time at the hospital, time at home with Elliott, grandparents stepping in to do our jobs as parents,
bringing us closer to the constant rotation of bedside watchers. Tick, tock, tick, tock
But when that call came in...TIME STOPPED. All I could hear was my heartbeat and the voice on the other line rattling off a list of dates....September 24 th it is....the final scheduled surgical repair for Xavier's special heart.
So with the remaining time till we fight the next battle in this war we will be free. We will swing at the park and swim in the pool. We will go to the beach and spend time with family. We will pray and cry and curse CHDs. We will live in the moment and thank God for all our blessings.
As we get closer we ask for your prayers. We ask that you keep not only Xavier, but our family in your thoughts. And we thank you for supporting us in this journey.