Suddenly a decade was achieved

And today she is ten

Ten years ago we were told she would never roll over

Nine years ago we were told she may never walk

Eight years ago we were told she may never speak

Seven years ago we realized the only one holding Bridget back was our believing people who had no hope

Six years ago she called MISSY & Sydney at the top of her lungs

Five years ago she touched sand

Four years ago she started kindergarten

Three years ago Angela Williams Baron daughter punched a kid in the nose bc they said Bridget was broken

Two years ago Bridget no longer needed someone to interpret her words

One year ago Bridget was invited to a typical classmates birthday party.

Today Bridget is defying anyone who says she cannot do and showing that not only can she do she can triumph

Tonight she will run into the 99 Restaurants and order Mac & Cheese

I never knew I could love someone so much or believe in miracles.

But Bridget is a miracle and she will continue to defy limits

She is freaking awesome

She is #tinybutmighty

She is loved

She is laughter

She is awesome

She is a decade old

She is Bridget

What’s your Superpower?

Earlier this month I had the opportunity to attend the Global Genes RARE Patient Advocacy Summit. It was a little surreal, I am used to introducing PACS1 as a “rare” syndrome and at this Summit  we all were rare. We all had similar journeys and stories. From misdiagnosis to undiagnosed for years. The breakout sessions were beyond informative and I will add all that I learned to my Bridget toolbox.

Yet it was the Keynote Speaker Rachel Callander‘s words that have stayed with me. “What’s your child’s superpower?”. It reminded me of a blog post I had written in 2013. This time of year, more than any, I need that reminder. Continue reading

Dear Seventeen

Dear Seventeen Magazine,

Last week I purchased your magazine for the first time in over 30 years. Let me offer my congratulations to your continued success. I am also in a kind of shock that I purchased a magazine for my teen that my mom purchased for me.  It seems that as much as the world has changed since my teenage years the more it has stayed the same within teen stardom land.

It is because the world has indeed changed that I writing to you. I bought the current issue because my teen is currently obsessed with all things Sabrina Carpenter.  This photo is how I won best mom of the day award. Continue reading

This photo shows

I love my IPhone but are you like me and your photos now live online rather than on your walls?  This one though I’m going to print. It shows how lucky I am. It’s a photo taken when Bridget was bored at a restaurant and so that I could finish my pinot meal her sister took her shopping.  Her sister let her pick out something and then showed her how to pay.

This photo shows why grandmas are always loved more than moms. This photo shows joy that we all should feel and carry with us. Continue reading


All kids have milestones that are not in the what to expect (not!) handbook.  New moms and dads dream about the first “momma”, the first fish caught and the first time their screaming newborn sleeps through the night.

There are however other milestones they are not aware of and some even I never expected.
Continue reading

I had another post planned…

Today I was going to participate in the Finish The Sentence Prompt hosted by the fabulous Kristi of Finding Ninee and her friends Mardra  and Kenya. Instead I am sitting here with goosebumps, sick to my stomach.

We lost another person to Suicide, Anthony Bourdain. Continue reading

Graduation Day

This past weekend was Graduation weekend on the Cape. I love attending graduation and seeing children that I’ve known longer than they’ve been alive in their cap and gowns. I burst with pride alongside their parents and loved ones, knowing how hard they worked for this small piece of parchment.  I take pride in knowing my signature is on their their diploma. That I had a very small hand in helping them succeed.

Truly it is one of my most favorite days of the year. Continue reading

More than words

You know when you think something is working and by all appearances it is, then you let someone else test your “thing” and it malfunctions? You have to go back to the drawing board and you are frustrated because you were so sure that your “thing” was working perfectly.

That my friends is life with Bridget.   Continue reading

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