Funny how we spend the last weekend of December remembering how we spent last year, and the first week in January planning (or resolving) how to spend our next year. How to do better, how to be better and how to live better. Continue reading →

Dear Doctor

I know your smart, it’s why I bring my child to you. However there are somethings they do not teach you in medical school that I think are important for you to learn.

Don’t tell a parent that what their child won’t do.
Do tell them that you are not a fortune teller. Continue reading →

This is the season of celebration. Our children are looking forward to opening presents. They’ve been on school vacation, enjoying a break in the routine. For some of us it’s also the season of judgement and chaos. Continue reading →

I was thinking about 2018, how I did not write as much as I should have. I should have been better a not just watching Bridget’s accomplishments but documenting them. Because 2018 was Bridget’s year.

She played on the playground.

Continue reading →

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

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 →

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 →