Wednesday was an emotional day. It feels like we’ve said that a lot on this journey, but it was especially hard.We moved Jacob down to St. Louis. He has officially moved from status 1b to status 1a. This is a huge step that moves him up on the transplant list. In a journey that is so often measured in small steps, this is a huge leap forward that will significantly decrease his waiting time. But, this giant leap forward came with an emotional step back. Unfortunately, we learned that due to the cold and flu season, visitors under the age of 12 are not allowed in the heart center. Thus, Ben and Addie can’t visit with Jake. Jake took the news pretty hard, but honestly, we all did. We always say “As long as we are together, we can figure the rest out.” But this time we have to figure out how to be “together” when we’re so far apart.This admission also marks a new, uncharted chapter for us. In the past, we have always had certain goals to meet, procedures to get through, benchmarks to hit, and a timeframe for going home. This time, there are no discharge dates, no goals to complete. We are simply here waiting until a call comes. A call that could come tomorrow…….next week ………or in months.

So we wait and we pray for the call that a life saving heart is his. We hold onto the amazing life that will come when all this is over. The life where he can breathe easy, where he can just be a kid, without the daily injections, the hospital visits, and the dread of the next big surgery. We wait. We pray. We hope. We look forward to the day we get to all be home together again!