Wednesday night was one of the worst nights of my life. My “Christian” came into the hospital due to an ankle bleed on Tuesday. We could not control his pain at home. His ankle bleeds are notoriously painful….just off the charts.
A morphine pump had to be used and he could just get comfortable. His pain was unbearable. Long story short, it was too much. He got into the kind of deep sleep that children going into surgery get into. He would not wake up. I kept rubbing his legs and arms and kept wiping his face with a wet cloth. I was out of my mind! The room was filled with doctors and nurses working to get him to wake up and they gave him medicine to reverse the morphine. It was so painful to watch him come off the morphine.
For a moment, which seemed like an eternity, I thought he would not wake up. What would I do if he did not wake up? It was the worst feeling of my life.
You think you know what hemophilia is all about. The bleeds, the infusing, talking to the school nurse constantly, having boxes and boxes of supplies…enough to open a small pharmacy…and you get so enveloped into the hemophilia that you don’t think that something else could happen.
Years ago some friends of ours, with a 2 year old son who had severe hemophilia, died from choking. Choking. Their lives were so immersed into the bleeding disorder that nothing else ever crossed their minds and it was devastating.
I’m not saying we should worry about living, but when you have a wake up call like I did, it reminds you to not take things for granted. Build Legos, snuggle and watch a movies, take their hand and follow them to their room to play.
We never know when our last day will be, so let’s make the most of each and every moment.
