I spent some extra time today just holding Elias, telling him how much we love him and thanking god for the moments we have had. I asked his angels to watch over him and to guide us to make the right decisions in his best interest, particularly his health. I was once again reminded today how unjust this disease Elias has can be. While we do not dwell on the difficult journey we know awaits, we also realize that it is unhealthy to deny that in which you know. That is what prepares you for the moments when you need your strength to absorb mentally what is happening and rise to the occasion. Otherwise, you waste your energy trying to justify why and how this can be happening. Pretending everything is alright, denying, or even just choosing not to accept the reality is an injustice to yourself. This last week has been particularly difficult as we watched several families, with Fanconi Anemia & one with VACTERL, go through extremely rough days. Some have thankfully resolved while others continue to struggle. In some cases it has confirmed some decisions we have made and influenced some others we are currently pondering. Overall though they are about what is best for Elias. Following the struggles these families are enduring are a very realistic reminder and has us pausing, as we often do, to appreciate the positive we do have currently, while remembering we are on a journey filled with highs and lows. Sharing this with you today has a great deal to do with an update I read this morning.
Earlier, I received an update on Stacy, the 5 year old FA patient we asked urgent prayers for this past Thursday night. While I am thrilled to report that it seems he put up a brilliant battle, unfortunately the news is not positive overall. From the update I was given, his body is shutting down and the machines keeping him alive. His strong and brave little heart continues to beat, but the doctors at the FA comprehensive clinic told the family this morning there was nothing more they could do for him. As I said before all of this is a somber reminder of what is possible with Fanconi Anemia, and even one more child having to suffer is another child too many. Our thoughts and prayers are with his Parents and their family. We hope that they somehow find comfort through this very difficult moment.