Author Archives: firebailey

About firebailey

I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

It’s about me…

I don’t usually do New Year’s Resolutions. To me it is setting yourself up for failure. Until I read my friend’s first ever blog post.  This friend, a former ESP for Bridget, has been present in my life for 6 years. We’ve run a frozen Muderella together and remained Friends. She is no longer Bridget’s ESP and yet here we are, friends.  We never see one another, yet friendship remains. Then this month she began her first blog.

It’s awesome.

Her first post (When you are not even sure who you are anymore) resonated with me, and made me rethink my anti-Resolution stance.  I know who I am. While reading her post I had an AHA moment.  I realized that while I know who I am, I am not taking care of me. Therefore…. Continue reading

Inside jokes only IEP Survivors understand

The other day a friend posted their status:

When you arrive for an IEP meeting, and there is a literal car fire in the school parking lot”.

From the commentators on the status, you could pick out the ones who had been thru an IEP meeting and ones who sent their kid to the typical kindergarten.

My response: That’s one way to get your point across.
Another response: We usually just start with introductions. But a car fire sure sounds interesting.
Normal parent: WOW.

Bet you can pick out which was the parent who never went to an IEP. Continue reading

A Guide for Doctor Do’s and Dont’s When Dealing with Parents

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

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