Bridget starts 4th grade today.
It’s crazy to me, but this year I am not scared. I’m lucky because this year her classmates include her hero Jake, a friend since preschool, her best buddies S & A who have included her in their group since 2nd grade and other true friends that look out for her. She gets invited to playdates and birthday parties, not because they have to but because they want Bridget to be with them. Continue reading
Bridget is ten years old and has spent 9 years and 3 months of that time in therapy. First it was physical therapy. Then feeding. Over time occupational therapy was added and finally speech therapy. We would take minor breaks over the years but they were more mini-vacations than actual breaks. She has always had at minimum one therapy a week. Bridget works very hard to live her best life.
We live with the motto, they said she would never so let’s prove them wrong. Continue reading
This summer Bridget was beyond lucky to participate in the Sail Cape Cod adaptive sailing program thru the Special Olympics and Kennedy Donovan Center. Adult and teenage volunteers taught Bridget and her peers every aspect of sailing. They learned to tack, to raise the sail and to race.
Just like almost every child that lives on Cape Cod, Bridget got to experience the sea.
On her own.
I read an article in today’s Sandwich Enterprise about a young lady in need of a double lung transplant. I keep re-reading this one sentence from a blog post she had written:
“I want to breathe”
Bridget is kind of a fashionista. She wants to wear pretty dresses, have her hair done just so and wear cool shoes.
I wish I could always protect Bridget from the mean people in this world.
I live in a bubble, to be honest. I have a tremendous village. Bridget has incredible people in her life that accept her for the person she is, with love. The acceptance she receives has allowed her to attend summer camps, be an active member of the general education classroom, ride the big yellow bus like a normal kid. I truly believe that our village has allowed Bridget to be an important part of our town, of our society and allow her a sense of being a normal kid.
Not a different one. Continue reading
When your child is diagnosed with autism you think okay, I know what autism is–I’ve seen Rain Man and Big Bang Theory. I know “someone” whose child has autism. You start therapies and treatments, but living with autism cannot be explained by the doctors or therapists. Autism is more complex than I imagined. Bridget wasn’t the only one diagnosed with autism. It seems like the entire family has been diagnosed. Continue reading
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
(Un)Diagnosed and still okay 