I never thought I would have a home. A true home. I always wanted one. I wanted someone to say Good Night John Boy. I wanted a place that would never be taken away, that would be safe and whole. Where people stayed. Not for a few months or years before moving because we needed to go NOW without a plan or a safety net.
When you have a child with a rare disease or a complex medical condition there are may facts you do not know. You do not know how to navigate the healthcare and insurance systems. You do not know how many specialists, therapists and pharmacists you will meet. You do not know how many times you will endure ER visits and hospital.
It’s it in those two locations that there are some little known and unexpected facts you will need to learn. Continue reading →
I received a text from Bridget’s teacher the other day. She was asking if something happened at home she should be aware. Bridget had been crying off and on all morning. They had never experienced this behavior before.
My mother-in-law moved in about a month ago. In doing so we had to realign the bedrooms in the house. She moved into Bridget’s room (first floor) and we moved Bridget to a smaller room upstairs. Bridget only needs a bed and a dresser. In truth her bedroom was the guest room with a toddler bed in it. Continue reading →
I used to love Christmas as a child. Before the freaking elf was invented, Christmas was fun and full of magic. My mom used to get upset with me when it came to Abby’s Christmas. I would never tell her it was Christmas Eve. She would just wake up (at her normal time) Christmas morning, surprised to see all the gifts.
It was perfect!
She got up at a reasonable hour, I received the best gift ever–not having to answer every single night if Santa was coming.