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
I was talking with a few moms whose children have special needs. We were talking about how some things are just normal for us that our normie friends just don’t get. Which makes sense, those of us in the conversation have older normie kids. We all admitted that until we started down a different road, we had no clue either.
Yes, this life is more complicated than the one I expected. But in all seriousness, life with Bridget is not that much more complicated than parenting Abby. Continue reading
When you look at this piece of paper you see what is immediately visible. It’s a blank page.
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
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
(Un)Diagnosed and still okay 