Last Friday, Grayson had an appointment with Dr. K, his Mito specialist. The appointment had been scheduled prior to his hospital stay, but much of our conversation centered around what happened two weeks ago.
Dr. K confirmed that the situation was as scary as I thought, and at some points may have been even scarier. She said you don’t get that many doctors in your room at one time unless they are really concerned. His body was shutting down.
We truly could have lost Grayson.
We talked about Grayson’s life, and then his death. Unfortunately (fortunately?) we have no way of knowing how long we will have with him. He could get very sick again and not be able to recover, or he could keep slowly declining for years.
Dr. K said, We need to look at every day we have with him as a gift.
I know it’s cliché to say I’ve been hugging him a little tighter since Friday, but I have. No one has forever with their child, but when you know your time is going to be considerably shorter than most, there’s just a different perspective.
One of my favorite things to do is watch Grayson listen to music. I need to post a video sometime of his face when he realizes he’s about to hear one of his favorite songs. It’s precious. He’s so happy, so innocent. He makes an Mmmmm sound at his favorite parts. If I’m singing to him and stop, he literally slaps my mouth like it’s a giant “Play” button to get me to start up again.
Music is God’s gift to Grayson, and every day I have with Grayson is God’s gift to me.
I pray for many, many more gifts, filled with smiles, giggles, and songs.