Instead of saying "Stella, leave your brother alone" or "stop taking your nappy off"
I have to say to my daughter,
"Stella, take a breath" and "Please swallow baby"
This is an incredibly life deliberating disease that deserves more research and more funding.
Seven months ago I had so many hopes for my girl, what she will be like in high school, what kind of woman she will be grow up to be. I knew she would always be strong and opinionated - she was a vivacious girl and still is on the inside.
Today, I just wait for one smile, one connection, each day at a time.
We've spent a few days at hospital this week. She's home now and is on the mend but every sickness knocks her little brain and body back 10 steps.........................
Please, cuddle your little ones and never ever take for granted what you have. I know it’s a cliché thing to say but I really do mean it and I’m living by it every single day.