Monthly Archives: April 2018

He gets her

Bridget has this super cool friend, Charlie.  Charlie is awesome. He walks her to class every day. He watches out for her at parties. Charlie is the boy that if Bridget was a typical second-grader I would be joking with his mom that I hope he stays sweet and takes her to prom one day. Continue reading

This is Autism

Today I’m reposting a blog from last year. I think it is important to remember there are many faces of Autism….and most of them don’t have it.  The parents and siblings (and everyone else) who live with Autism never seem to be recognized. Yet without their support, the person with Autism would have so many more struggles to be included.

Originally posted on 4/3/17

A parent walks into the store, dragging her child kicking and screaming as other shoppers look on.  A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.

A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.

A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking. Continue reading

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