Monthly Archives: April 2018

5 minutes to Home

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.

Just a home, one where there was laughter and sunshine.  Continue reading

Little known fact

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

When hope is all you have

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 first instinct was to respond welcome to my life. Continue reading

I was holding her back.

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