Happy PACS1 Day! It’s Official. With the help of our Representative (Randy Hunt) the Governor of Massachusetts declared it:
Happy PACS1 Day!
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Author Archives: firebailey
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
Friendship
I write often, about how my village saves me. How incredibly lucky I feel to have friends that get me. That love me and that honestly want to be around me.
Bridget has a village, too.
Don’t abandon us.
Remember when you were in high school and the boy you had a crush on broke up with you but not quite? I remember Bondo, who instead of breaking up with me would say he was “washing his car” every time I called. Fast-forward 30 years and we are the best of friends. The joys of living in a small town. Continue reading
Rare Disease Day #3
Rare Disease Fact Day #3
When your child is first diagnosed with a rare syndrome your first thought is YES! We have an answer. We know what is making our child unique. Maybe there is a cure. Maybe there will be a roadmap that we can follow. Maybe there will be proven therapies and strategies. Continue reading
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
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
The Island
I have a running joke with my friends: Let’s run away and buy a private Island. On it we will build our true village. We will be surrounded by our “family” that gets us. No explanation needed. Just comfort and company. Continue reading
(Un)Diagnosed and still okay 