Well, unfortunately, my daughter did one year. We spent so much time in the hospital. All of the major holidays,
first day of school, or anything else that she wanted to be healthy for. My poor girl always took it like a champ but mom could always look into her eyes and see the pain, fear, frustration and overall exhaustion.
All we kept being told was there was no cure. She has a life threatening disease that could take her at any time. Each time she had an "attack" it would cause such severe pain that the morphine had to be combined with other pain med to give her any relief. She couldn't e
at or drink during an attack either which required hospital admissions every single time.
One would think after years of this that we could get some kind of system that could get her admitted immediately with an attack, but no. At our local hospitals they require going through the emergency room each and every time. Which will be a whole other story in itself.
Back to the holidays. Our families are amazing and they would come in and see her. If she was up to it she would help them paint Easter eggs or they would gussy her up with New Years headbands, streamers or fancy nail polish. Everyone did what they could, when they could.
It was hard but we did everything in our power to keep things as normal as possible for our other children. It wasn't easy. Unfortunately it was just a way of life for all of us. If there is an upside to any of this it is that our family has so much compassion and empathy for each other and others. We are very close and never take a day for granted.
So that is it for now. Please share your stories of your life with us. And comment below to let me know if can relate to this in any way.