Thursday, June 21, 2012

In Honor Of...

Early this morning, a little girl named Mylee Grace earned her angel wings at the tender age of five. She suffered complications from chiari and mitochondrial disease. I'd heard about her and seen her lovely smile many times via social media, but I unfortunately never met her. Her mom and I are Facebook friends due to many mutual friends and that shared special needs connection. Unfortunately, this isn't the first death of a child I have heard about in our special needs circles. It won't be the last, but it has made me the saddest. It hit home due to the mito. And it really has made me think. When someone passes away, we try to take a piece of them with us, to honor them, to change our own lives for the better. We say someone touched us or inspired us. How does this work when someone dies who you had never met? I think it's like this: Today I changed fifteen diapers. Fifteen. Fifteen MESSY diapers from my FOUR year old, who should be potty trained, and who is obviously suffering from some sort of intestinal ailment right now. Each time, I wanted to grumble, or be annoyed, or feel sorry for myself. But, I caught myself. Oh sure, I still wasn't jumping up and down about the task at hand, but I thought about how much I would miss every moment, even THOSE moments, if Joshua was no longer with me. I will try harder than ever to take all of it... the diapers, the messy house, the formula spills, the crying, the therapies, the doctor's appointments... in stride. Because if those things were gone, if he was gone, I would miss it all terribly. Mylee, you are pain-free now and I am praying for your family. Thank you for making me more aware of the blessings in my every day tasks. I am wearing my butterfly necklace... and smiling while I change those diapers... because of you.


April Broussard said...

I tweeted you about my friend Terra's blog. She has a daughter who battles Mito disease and Terra is a tireless advocate. She inspires me.
If you ever want to get together, contact me at

April Broussard said... might help if I include her blog. :-)