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.

Throw back post from 2014

This is kind of a Jen Kehl type of post but I hope everyone bears with me. I listen to Pandora at work. This means music goes from Eminem to the Drop Kick Murphys to the Glee Soundtrack.  The other day right after I heard a song by Eminem the music transitioned to Christina Perry’s A Thousand Years (theme from Twilight).

It was the instrumental version so I did not have the singer’s voice, just the one in my head. It occurred to me that the song while about true love, to me is about parenthood.

“The day we met, Frozen I held my breath. Right from the start I knew I had found a place for my heart…”

With each girl I literally held my breath when I first held them. I was so afraid I would break them. But I knew in that instant I had found my home. One where I would always be warm and loved.

“Time stands still. Beauty in all she (he) is…I will not let anything take away what’s standing in front of me…”

Time does stand still. It also goes faster than a heartbeat. But there are moments of parenthood where you are lucky to see for the rest of your life. Their first step, their first smile (for real, not the gassy one). The day they drive the car for the first time. The moment they find their true love. No matter how many times you hear “MOOOOMMMMM” and wish they had a mute button. It will erase the moment you heard them say momma the first time.

“And all along I believed I would find you. Time has brought your heart to me. I have loved you a thousand years. I will love you a thousand more”

Children don’t understand. I know I did not understand the depths of my parent’s love until I had my own. Time might march on. We are only “here” for a short time. But love transcends time. It transcends distance. You can have a child half-way around the world and yet your love reaches them.

Your child might be non-verbal. They might be in the midst of an epileptic seizure. They might just be being a pain in the butt teenager. Yet they feel your love.

For a thousand years you get to feel theirs right back at you.

And that is how deep I got into A Thousand Years until Men in Hats came on. So everyone grab your child and do the Safety Dance

 

Fun Facts

Here are some fun facts about PACS1 children:

They all have button noses

They all have the same smile

They all have a degree of intellectual disability

They all have the desire to cuddle

They all have potential

They all have changed the course of their family’s life

They all have multiple doctors

They all have a PACS1 Siblings

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This is Bridget & Cooper. Two children with PACS1

#RareDisease Month

When your child is diagnosed with a syndrome that has just over 10 other confirmed cases, you learn in one breath what your child has and in the other that you are still the expert on whatever “this” is.

As one PACS1 mom put it: In a moment nothing changed at all, at the same time my whole world became different. Continue reading

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