I’ve been thinking about the murders and terrorism in New Zealand today

And saw this meme

Thought about all the hate in this world.

It makes me sad and heartbroken

Just like the Holocaust survivors murdered in the Synagogue, people were murdered in their house of worship

They should’ve been safe

I’m so sad

It’s not fair. It’s not right. We as a global society are better than this. They deserve more.

They deserved to live.

We need to stand against hate

In our neighborhood

In our Country

In our World

What I want, no need, to learn is how to make our world safe for my girls.

Safe for your children

Safe for all

Because we need to stand against this terror

We need to stand shoulder to shoulder without neighbors and say you’re safe with me

*****

This is how I Finished the Sentence, I want to learn…,

Did you know that when Bridget was diagnosed with PACS1 there were less 15 people in the world diagnosed? Fast forward 5 years and we have over 100 children known to have PACS1.

Which is awesome but still ultra rare. Continue reading →

In 2013, a child with Down Syndrome went to the movies and was murdered by off-duty police officers working as mall security.

Let that sink in.

A child was murdered by police officers because they did not recognize that he had a disability. He was murdered because they did not know how to deescalate the situation. He was murdered because they were not trained.

They did not know.

This is why I am have been writing all month for Rare Disease and PACS1 Month. Continue reading →

When you look at this piece of paper you see what is immediately visible. It’s a blank page.

Continue reading →

I some days find myself on a balance beam. Without a gymnast ability. I am definitely not Mary Jo. My beam is so much more treacherous.

My beam is Bridget. Continue reading →

When Bridget was an infant and we heard the (thankfully false) prediction that she may never roll over or have a life of quality, we were devastated. Then we became Bridget’s warriors. We decided what goals we would have, we brought in therapists. We researched via Google. We found a team of therapists who were innovative and relentless in their quest to have Bridget obtain the tiniest of movements that snowballed into  her jumping on the bed.

It took 10 years, but my girl jumped on the bed while joyfully yelling, “Super hero slam!”. Continue reading →

Originally posted on 23-FEB-2016 to remember that sometimes it’s our easy child that makes us want to scream. Continue reading →

Recently, I wrote about not wanting to fail Bridget. An awesome reader responded about how maybe I’m not failing Bridget, she is just showing me her own form of independence and self-determination.

Bridget is definitely determined.  Stubborn, in a good way. Continue reading →

I consider myself very lucky that (for the most part) Bridget is an easy-go-lucky kid. In someways she is almost too compliant. She wants to please, never stops and questions a directive.  I understand that most parents would be woo hoo! But being Bridget’s mom it becomes a more complex issue.  This was illustrated in a way I hadn’t thought of the other day. Continue reading →