Author Archives: firebailey

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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.

I need a drink (seriously)

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If we were having a glass of wine, I would tell you how thankful I was for my mother. She knew I was having a weekend from hell and dropped off Chinese food.

If we were having a glass of wine, I would tell you how thankful for my two cousins who have recently reconnected with me. I have missed them and hadn’t realized how much.

If we were having a glass of wine, I would tell you how much it sucks when your child is sick and you don’t know why. I would remind you how thankful I am that she still wants to lay in my arms after she has horrific testing.

If we were having a glass of wine, I would tell you I hate the IEP process, yet I am thankful for Bridget’s teacher that talks me off the ledge. Continue reading →

Never doubt the power of parents

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When I started this blog in the summer of 2012 I began a journey of discovery.  I did not know one person who was in our situation. Where you left the hospital with a brand new baby and were told they had something wrong but they did not know what it was or what it would mean for the future. It took four years of feeling alone before I discovered the world of blogging.  Then I met Kristi, another mom in a similar situation.

It would take another two years of blogging before a kind reader would lead us in the direction of a diagnosis.  We were told that Bridget had a rare syndrome, that she was the only third child discovered and the first female. Thankfully the power of social media is faster than medical research. Our family was welcomed into the PACS1 family and a brand new journey emerged.   Continue reading →

From this day forward…

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When you get married you promise to be with your spouse from this day forward for the rest of your lives.  David and I have come to the realization that since Bridget’s birth she will be with us from that day forward. I know, you always have your children with you. When you have a child with a disability that statement has a different connotation.

The weird part is, when Bridget was smaller and at her most fragile she was actually more portable. As long as she was in a carrier, she was content. Now that she is older, she is less likely to pass as a precocious toddler. Now when I carry her and someone asks her age I receive that look. The look that you are a bad parent babying your first grader. Until you talk with Bridget, unless you know her, you would not immediately know she was not your typical seven year-old.  Continue reading →

Not my kid

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My kid would never…
My kid is “everybody’s” friend…
My kid is never mean…
My kid was provoked.

Let’s be honest, there is always going to be kids that are mean, there will always be “cliques”. There will always be the kid that doesn’t fit in and will be picked on.

We always hope it won’t be ours. If it is mine, I want to know.  Continue reading →

For the uninitiated, this is what it looks like

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I’m going to feel all lapsed-Catholic guilt for admitting this, but I sometimes despise this life. I hate that I don’t understand my own child. I despair that by my own actions I am the trigger to her crisis. I freaking loathe that this behavior doesn’t happen at school but only at home (see trigger comment).  I despise that I cannot calm her, I cannot reason with her, I cannot even give in to her because if I do this will not be a daily occurrence but an hourly one.

For the uninitiated, this is what a meltdown looks like. Continue reading →

I need a glass…

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If we were having a glass of wine, I would tell you how much I like that the Bruins are back. I missed my boys and my boys who only text me during the Bs.

If we were having a glass of wine, I would tell you that I need you as my personal shopper and go-to therapist. I would thank you for keeping it always real. Even when I fall in love with an online sweater that just doesn’t work in the real world. Continue reading →

Viral. MD Code for I wasted my money on a medical degree

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Remember when I said we finally hit that typical milestone? The one that the school nurse calls and you have to take your child to get her eyebrow glued. Sigh. If only it ended there. Three days later my phone rings, again. “Hi Kerri, this is X from the school nurse’s office”.

Me: Did she hit her head again?
She: No, this time she has a sudden fever of 101.9 degrees.

This mom of the year couldn’t leave her office. Thankfully grandma was free and went to pick up the sick child. Then my phone rings, again. “Hi Kerri, this is mom. I don’t want to worry you but….I think she needs to go to the hospital.” Continue reading →

A typical milestone?

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Every parent has received that call from the school nurse, “Mrs. Ames it is X from the nurses office, Everything is fine but…” You never have to actually go to the school. Usually it’s because the child is avoiding math (not my child, of course) or they bumped heads with a classmate (okay, probably Bridget).  Then it happens, you get the call when you have to go to the school to pick up your child.

It happened to me, just the other day. Continue reading →

Being unique

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When you are a parent of a child who has a disability you have experiences that other parents do not. For example, this summer Bridget’s social program was not what I expected.  There was a limited social program. I reached out to a local camp, who would take her but only if we provided an aide.  With Abby I just sent her to camp. Continue reading →

If we were sharing

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If we were sharing a glass of wine, I would tell you this week has been better than last.

If we were sharing a glass of wine, I would thank you for “getting me” when Bridget was sick. Knowing there was one other person who heard she vomited and immediately got nervous because of her history made me feel less alone. (By the way, it was a common cold that of course got her reflux up–but no ER visit so we are counting it as a win) Continue reading →