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.
6 thoughts on “This Day is a Gift”
I pray for many more gifts for you and your family. Many many more.
I pray for many more gifts for your family. I was very worried when I read your post about the hospital – it just sounded awful and scary. This makes it even scarier for you, I'm sure. I am thinking of you, and hugging you from afar.
Music is such a powerful gift in this world. I'm glad Grayson has the gift of sound in his life, even if his sight isn't great. ((HUGS))
Oh wow! That is so scary. I hate when they tell you after the fact that it was much worse than you thought it was… Like a brick drops in your stomach to hear it. I don't think you sound cliché at all. I think it's powerful truth. and while I know you don't think you're an amazing mom, I truly think you are. I know that many women, no matter how much they loved their babies, they would just burn out. You have real strength, even when you feel weak you keep going, that's courage and strength and not everyone has it. So I do think you're amazing. *hugs* to you and sing a little "Sebu!" to Grayson for me…
It was wonderful to meet you even though we were both were in the Houston PICU Have added your family to my prayer list and I am asking my praying friends to do the same ! Hugs and prayers from Jackson, Harrison and Charlotte's Nannie
Praying that EPI 743 becomes available for the entire mito community ! I would have never dreamed that the medical community would be even working on this medicine. Praying for all our mito babies !