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 never understood

I never understood what the big deal was about milestones. Everyone has them, right? They are called milestones for a reason. Certain things are supposed to happen at a certain time. Abby? She was usually a week or month early on every milestone. Except talking. There she was slightly delayed. However when she began to talk, she talked in paragraphs. Even in her sleep. Sadly, I don’t remember any of them but when she walked, a week before her first birthday.


Boo’s milestones are completely different. I remember every one because they are different. I remember her first hospitalization. I remember the first time I had to make my own baby food because she was allergic to everything else. I remember her first steps on a walker.



I remember her first word, Abby. I remember every therapy appointment that gave Boo the tools she needed and the patience of her therapists. Then there are the crazier milestones. Take last couple of weeks. Boo had a lot of milestones this past month. 

For the first time I walked into a store with her. Usually she is carried or in a carriage. But I just had to run in for a gallon of milk. What could go wrong I wondered. Um….forgot about all the items at her height she could now knock off the shelves. For the first time we held hands, walked into a store and destroyed it. Plus we got the milk.

Boo went to the bathroom by herself.Well, she went into the bathroom and pulled down her pants. By the time I realized she was in there the poop was on the floor. However she went into the bathroom and pulled down her pants. And I cleaned the bathroom floor.

Boo fell in love with Frozen. She knows Elsa and can say her name. The entire house can recite verbatim every word in the movie.

Boo stole one of Abby’s stuffed rabbits. Renamed it Clover even though it bears no resemblance to the bunny in Sofia the First. Abby was okay with the renaming, not so much the stealing. Even though Abby hadn’t even remembered she had the rabbit. Score one for sibling rivalry milestone.

She said I ove you. Without prompting. I get to say it back.

I never understood what the big deal about milestones were, until Boo worked so hard to attain them.




Finish the Sentence Friday

This is one face…

Today is Autism Awareness Day. While I may not (yet) be comfortable with Boo having an added diagnosis of Autism, I am getting there. There is no escaping the fact that Boo was tested and she has been diagnosed with Autism Spectrum Disorder. But what does this a child with autism look like?
It depends on the child. When Boo was first diagnosed my friend Julie told me that Autism Speaks has a motto: Meet one child with autism and you have met one child with autism. The children are as unique as a snowflake. Each wondrous and magical and heartbreaking beautiful.  

A child with autism is born just as perfect as a child born without.



A child with autism will light up your world with their laugh just as child born without.


A child with autism will love and be loved by their parents, siblings and friends just like a child without.


A child with autism may love the beach, just like a child without. However it might take them longer to enjoy the experience. They may also wear sneakers at the beach but that’s okay.


A child with autism will learn to walk, run, jump and talk. Just like a child without.


This is what a child with autism looks like.

Photo Credit: Jen Strano


Can you tell? Can you see the autism? Probably not. I hope not. I hope when you see Boo or any child you see them and not one of their diagnoses. A child with autism works harder than the child without. A child with autism spends most of their days in therapeutic environments working to attain behaviors that will allow them to be included. A child with autism is loved by their parents and their peers. By their community.

“You are so out there” is a comment I hear a lot about Boo. But how can I hide her? If I am not out there how can you know a child with a special need and realize they are just like your own child.

Beautiful. Funny. Smart. Frustrating. Heartbreaking. Mysterious. Loving. 

That’s why I blog. Why I refuse not to just stay home and hide. To hope just one person sees my child as Boo first and whatever label they put on her second. Well, eighty-third. Because let me tell you this, there is a lot of things about Boo I want people to see way before they see autism or undiagnosed genetic syndrome or intellectual disability.

This is just one face of autism. 



Please join me in sharing your child’s face, their story, their life. 





My choice so I am fooling around

About a year or so ago Jen Kehl introduced us to the Mix Tape. Today she has given me the choice to make any choice I want. As you know, there is nothing I want to do more with a mix tape than to mess with Jen. Since it is April Fool’s Day that she made it YOUR CHOICE is just asking for trouble.

I thought the best way to handle this “choice” is to show how many ways that I have messed with Jen. But alas, I am only allowed to choose five. And Jen, since these are all previously posted I am making it easy on you. You just have to read the post and not listen to the songs.

The first time I ever did a mix tape I messed it up. Seriously not on purpose. But it became the start of a trend. Always sure I was using the right theme and well…not. I thought the theme was Stalker. But well it wasn’t and Kristi called me out on it. But this is my favorite song from that week. Back then I was such an idiot not only did I not know how to post the link back to Jen’s I didn’t realize Blogger had a You Tube thing to post actual videos.



Jen was probably happy I couldn’t figure out the link back. Then I made a mix tape for a friend….except I wasn’t supposed to. 


After a while Jen friended me on Twitter so I would no longer miss the theme. I admit I kind of got creative. She asked for Dealer’s Choice…I gave her gambling songs. I also gave her ABBA because you cannot get into trouble with ABBA.

Then for no reason I completely disregarded Jen’s rules and made a mix-tape just for Jen. See Jen is this great Zen personality but like all of us she has moments of Holy Crap I cannot take on one more thing. Just to remind her and thank her for letting me play along this year….



Happy April Fool’s everyone. I am glad to be your Foolish DJ

My Skewed View

I’m not that Fire Fighter’s Wife

I’m not your typical wife. I don’t put limits on David. He wants to go hunting….go and bring us back a bird. He wants to go fishing…please bring me back a Mako shark. He wants to take overtime…please take the night shift so I can work and also have the remote control at night.



Last week two fire fighters lost their lives in Boston. It’s not the first time and certainly not the last. By the time David and I got engaged, eons ago, he had been electrocuted, dropped 20 feet in a “training” exercise and been in numerous situations that should turn my hair straight.

I will never forget the call I got, at work, saying David was fine. I replied, of course he is not realizing that he had been at a fire (off duty) and the power line going to the house had burnt but was still live. And fell onto his helmet. He was flown 20 feet with only the fire engine stopping his trajectory. I left work and went home to let the dog out. I thought he was at the hospital. Imagine my surprise to find him on the couch. Smelling burnt. Wondering why the heck I was home early. By the way, he smelt burnt for almost a week.

A few years later came 9/11. When I sat home alone and watched the coverage of the World Trade Center heroes and victims. He was at the Station in case something happened in Boston. I sat at home, tears falling, realizing just what I was getting into planning a wedding to a fire fighter. 



Then the Marathon Bombing happened. Numerous fires happened. All the time I realized that as much as David loves me and the girls he loves his calling more. He is a fire fighter. He is the only person I know who is doing what he said his dream was in kindergarten.  

This week David will be attending the funerals and wakes of two men who gave their lives to save the innocent.  Men he never met but who were his brothers. Ed Walsh, a lieutenant who left three children under the age of ten and Mike Kennedy a Marine Vet who survived our Country in more ways than one.

A friend asked me if I was okay. I was surprised and answered I didn’t know the men who died. In truth I never listen to the scanner. I never wonder if David will be okay. 

I am a fire fighter’s wife who understands that the call to duty is not necessarily to my own. But that is the man I adore. The man who will answer the call to save someone’s life. The man who will leave when I am putting dinner on the table or a short skirt on for date night. The man who as much as he loves his family will put us second to his first duty…

To save others.

May peace be with the families left behind.


Firefighter’s Prayer 
When I am called to duty, God wherever flames may rage, 
give me strength to save a life, whatever be its age. 
Help me to embrace a little child before it’s too late, 
or save an older person from the horror of that fate. 
Enable me to be alert to hear the weakest shout, 
and quickly and efficiently to put the fire out. 
I want to fill my calling and to give the best in me, 
to guard my neighbor and protect his property. 
And if according to your will I have to lose my life, 
bless with your protecting hand my loving family from strife

Boston Children’s Hospital

It’s quite simple. We owe Boo’s life to Boston Children’s Hospital. Those first scary days in the NICU? It was the nurses who saved my sanity. I will never forget the panic on the doctors face when he gave Boo oxygen and said she needs to be transferred. NOW.

We went to Children’s not because we were scared. When Boo was born I told the nurses and the doctors that she was breathing funny. They sent us home, me the over-reactive new mother. A complete 180 from when I had Abby and they wrote in her chart, failure to bond.

We took Boo home. Went to the Pub because she was “fine” and it was David’s birthday. This is back when they gave you a free meal on your birthday. The next day the VNA nurse came to our house to do a well-being check on Boo and asked, why is she breathing so funny. She was breathing at 110 breaths per minute. The average newborn breaths at 30 breaths per minute. Two hours later we were at Children’s Hospital. Sure that this was a fool’s errand and again we would be told that we were overreacting we brought Abby.

And spent the next five hours with Boo hooked up to monitors and her sister seeing first hand that Boo wasn’t safe. David and Abby went home at 11pm when we finally got a room. It was 2am when after an ECHO and found out she had FIVE holes in her heart. Then came that scary moment when Boo lost consciousness and I received my first introduction to the NICU. They asked me to leave so they could do some tests. I will never forget coming back, seeing nurse straddling my 5 day old newborn and screaming at another nurse that I couldn’t be there right now. Not because I was interfering but because she didn’t want that image in my head.

But it is. To this day I see that nurse, Allison, straddling Boo trying to get blood out of dehydrated veins. I see Mary, who when Boo passed out in my arms and I was alone screaming HELP HER and she did. Then she taught me not only where the oxygen was but where the HOLY CRAP button was. I will never forget going home one night to try to sleep but not. Dropping Abby off at Kindergarten and the head of the school offering to drive me back to Children’s because I looked like death warmed over. That morning I went back and Boo wasn’t where I left her. I thought my child had died.

For one moment imagine walking into a hospital and not finding your child where you left her. Imagine how it feels that you left your child for eight hours and she wasn’t there.

But no, she was safe. Just transferred from the scary NICU to the not so scary part of the NICU. The ward that looked like a cattle barn. 3 patients to every nurse. She was getting stable. We were sent home seven days later. 


I was terrified. I didn’t want to leave. Boo spent the next two years sleeping on my chest. She ended up with 10 doctors working to keep her stable. Over the next five years she would have surgery on her spine, she would aspirate and be hospitalized over 12 times.

Boo survived.  Despite our fears. Because of Boston Children’s Hospital.

The first year of her life we formed Bridget’s Brigade. Our family and friends have walked every year since. Bridget’s Brigade has raised over $20,000 in support of the only hospital we trust. We walk to fund the research that may someday, far in the future, tell us why Boo must suffer. We walk for the other parents who walk into the NICU and think our child will not come home.

Throughout the years we have acquired many specialists. We have held Boo down for sleep studies, lab work, EEGs, surgery and MRIs. We have also watched our child triumph. To do things no one thought she would be able to do. Love her sister, walk and run and jump. She has words. Boo has friends. Boo has more support than I would have ever realized that moment when I thought she was gone from my life.

The morning when my heart broke and was rebuilt in an instant.

We walk for Boo and the thousand other children who bear unspeakable pain. And the parents who bear witness.

We ask you to share our story and support our cause. Last year Boo and Abby kicked off the Walk. We walked with 20 of her friends and this year will walk again. We ask you to please donate to her team:

Every donation, as little as $10 goes towards helping children like Boo. It helps children who are suffering unspeakable pain. It helps parents who have the utmost faith in a hospital to save their child’s life.

I only have one thing to be thankful for this week: My Boo and the hospital who never stops believing in her.

Ten Things of Thankful

Baboom

You know that favorite song on the radio or one that wasn’t quite your favorite but then you hear it live and think….THIS IS IT. This is what the songwriter had in mind when they wrote this song. This song now means something to me. 

My friend Jen Kehl took my idea this week and is making all her DJ’s come up with mix-tapes of five songs you loved but blew you away when you saw them live. I think she did it so I wouldn’t mess up the topic this week.

My first concert was Barry Mannilow, with my mom and two of her friends. The fourth friend bailed at the last minute. I got to go, all dressed up and feeling beyond adult at age 12, go out to dinner with the ladies and order off the main menu. No kids menu tonight! 
To be at the concert and see these (in my 12-year old mind) OLD ladies dancing and screaming and wishing they were Lola….



I know I’m a dweeb. But that concert was the first time I saw my mom as not a mom. As a woman. One who had friends and a life outside our home that wasn’t always the happiest. When I heard this next Barry song, saw my mom’s tears and got it. I got that my mom was Susan. She was woman. She was proud and she was someone I should respect. Every time this song comes on the radio I think of her. In that moment. With her friends. And me, lucky enough to experience it.


Miranda Lambert. We saw her as an opening act for Toby Keith before she was famous. I had loved her from Nashville Star and was psyched to see her live. She rocked this song and David turned to me and became a country music fan. It might have been the gun powder or leather bustier.  



Regular readers of this blog understand that, to me, life should be a Buffet song. The thing is Jimmy’s studio albums…well they aren’t the best. I mean they are okay, really. But until you see him live you have no freaking idea what you are missing. And his covers? I was never a Dead fan…but fell in love with this song Jimmy did live.



Last but not least….another Buffet song. Jimmy can work a crowd for sure. I hope you can find that Particular Harbor and it gets you through the week….




Thank you, my friend, Jen Kehl for letting me do the prompt this week. Oh and if you have a chance check out her son Isiah’s blog. Seriously the kid will blow you away!!!


My Skewed View

Sometimes

Sometimes I get done. Just done. I’m not a hero. I am not a saint. I am just a mom. Sometimes just being mom seems to be too much to ask. I lose my temper. I lose my cool. I lose where I put my keys. 

I am never prepared for what will take the floor from beneath my legs. I think I have it handled and then BOOM. I am back in warrior mom mode.


Boo has had a fantastic year. She really has. She has come so far. She has made friends. Been to birthday parties. Learned her name, her age, address and (most) colors. She can count to four (more with Abby prompting). She has become (somewhat) toilet trained. She asks for her therapists, she wants to see her teachers. She stole Abby’s stuffed rabbit (hello, milestone!).

Recently Boo was referred to a neuro-urologist. Fancy title who knew that discipline existed? His mom must be so proud. He was great, all kidding aside. Older, beyond knowledgeable and respected. Here is what concerned me: Boo’s GI had contacted him throughout the years asking his opinion on Boo’s stomach issues. Boo’s GI did not refer me to this doctor. Her pediatrician did, after I saw GI and she said that Boo’s funny smelling urine (too much info, I understand) should be seen since that is not what she treats. Also Boo has been complaining about stomach pain but is on the maximum dose of reflux meds. Maybe there is something else going on.

For years? Since she began toileting? If this GI doctor, whom I respect and trust, has been consulting this other doctor why didn’t she refer us earlier! Why is it left to me, the mom without a medical degree, to find the best neuro-urologist in the State and get referred? Why do I have to then call the GI and tell them to write a note of referral? 

I take Boo to see this uber-urologist. He asks if she has ever had an MRI. I explain, yes that is how they found the tethered cord. She had spinal surgery in 2011. His reply, oh with her lack of bladder/bowel control and toe walking I am wondering if her cord is tethered. Since it has been surgically untethered there is a concern that it has reattached itself. WHAT!!! Sure it is rare that it might have reattached. But this is Bridgetitis we are talking about.

It gets better….as he reviews the 2011 MRI he states to the medical student do you see she only has one kidney? Now, I am not a mom with a medical degree but I do know that most children come with two kidneys. This is not something a doctor should announce to the unsuspecting parent. 

But wait…there it is! They found the missing kidney. But they are unsure if Boo’s spinal cord has reattached itself to her bladder. In June she will have to go for more testing. Invasive testing. While not painful it will require me holding her down for yet another test.

I sometimes wonder when does it stop? To the uninitiated it seems okay, it is just one more test. To those who have never had to hold their child down during a medical procedure I say whatever God you believe in to Bless you and yours. I hope you never have to experience these feelings. But me? I’m kind of losing faith. I am heartsick and tired of getting to the comfortable part of being Boo’s parent to being the parent who has to bear witness to her pain.

I do not understand how God could let my friend’s child have cancer. I do not understand how Boo who is the most precious of children has to suffer such pain. I do not understand why a parent who has never willingly harmed her child has to hold their child down while others do. Lab draws, catheters, ultrasounds, surgeries, therapies and the list goes on.

When, dear Lord, does it stop?

I am not a hero. I am not looking for some one to say, there there it will be okay. Because it won’t. Being Boo’s parent doesn’t make me a hero or a warrior. Any parent would do and feel the same.

It’s just sometimes I wish I was Abby’s mom. Cause that is a hell of a lot easier.





Thanks…

It is that time of the week to look back and give thanks. I haven’t done so in quite some time. Not that I haven’t been thankful but just that I have been to overwhelmed to sit back and say,

Thanks for not kicking my ass this week.



It was debatable. That’s for sure. There were times when I said (out loud) I’m done. Just stick a fork in me and call me burnt. Burnt worse than an Irish woman in Aruba without a base tan (been there, have the t-shirt).

But per Lizzi this is not the post for bitching but for being grateful. So here I go….

1. I am thankful I have a job. Because you know I have to pay the mortgage.
2. I am thankful for popcorn. Because as corn is a veggie and butter a dairy that means dinner last night had two of the recommended food groups.
3. I am thankful for Kristi who takes my calls and answers my HOLY CRAP I AM LOSING IT texts. 
4.I am thankful for the doctor who says, oh there is the kidney after telling me (mistakenly) that Boo was missing one.
5. I am thankful for Abby’s school for embracing the idea of Special Needs Awareness Month (more on that later).
6. I am thankful for Kate and her ability to put into words how much she loves her dad.
7. I am thankful for Boo’s therapists who laughed their asses off with me during paint night where we forgot about finding our strength and instead found our hotness.
8. I am thankful for Tia. The one who loves and accepts me and gives me her honest opinion at all times.
9. I am thankful for Dana who told me about the Outlander series. I am hooked and have been enthralled each night as I make my way through the series (currently on book 3).

And finally 10….I am thankful for my girls. The ones who are currently sleeping and dreaming the dreams of the innocent.


Ten Things of Thankful

3/21 World Down Syndrome Day

Today is World Down Syndrome Day, celebrated by showing the ability. Although Bridget doesn’t have Down Syndrome one of her best buddies does. Honestly a part of me feels silly writing today, like I am jumping on the advocacy wagon for a syndrome my own child doesn’t even have.

But today is important. Today you must see the ability. You must acknowledge that all children make an impact, those with Down syndrome, cerebral palsy, epilepsy, autism, multiple sclerosis and those children who are sadly typical without that something extra (pun intended). 

You must acknowledge, today and every day, that children are different. That adults are different. That if we were all the same the “r” word wouldn’t hurt. That advocacy means you stand up and speak up to support those who need acceptance and tolerance. When you see the world through your child’s eye you do not see race, gender, body-size or disability. They see their friend. 

World Down Syndrome Day is centered on choosing to see a child through their ability and not their disability. Children should be celebrated. Children should be encouraged to live life to their potential. Your child comes with unlimited possibilities and not one instruction manual.

Boo and her friends shouldn’t be pitied. They and their parents are not heroes. They live life to the fullest. Their milestones are celebrated a little more because they have worked hard to achieve the smallest step. Just like your child a person with special needs has determination, stubbornness, laughter and love. They go to school, join Girl and Boy Scouts, play sports and have friends.

They also have something a little extra: sometimes an extra chromosome or an undiagnosed syndrome. But life would be pretty boring if the only ice cream we had to eat was vanilla. People shouldn’t be the same. We should celebrate our differences and our abilities.

Take today 3/21 and celebrate those with something extra. Like jimmies. 


For more information regarding Down Syndrome:
Heartbeats for Down Syndrome
Massachusetts Down Syndrome Congress http://www.mdsc.org/
National Down Syndrome Society 
http://www.ndss.org/Down-Syndrome/
World Down Syndrome Day 
http://www.worlddownsyndromeday.org/

A few friends of mine are participating in a “Day in the Life” stories from parents whose child has Down Syndrome. Please take a moment and check them out, they are kind of cool!

The Bates Motel
Big Blueberry Eyes

Who invented the weekend?

Sunday cannot come quick enough. I know you are thinking Friday. Friday night is the time we wait to arrive. Some time ago, when we were once again late for school Abby had this idea about the weekend. That they just were not long enough. After spending most of my weekend cleaning, shopping, cooking and doing laundry I have a different opinion.

When I leave for work on Monday morning this is the view in my kitchen:

Yes, I have an old-fashioned popcorn machine. It’s used almost daily for dinner.

This is how the kitchen looked last night. Yes, WEDNESDAY NIGHT. And yes, those are unused Valentines on my counter.  Don’t judge.


How the hell is that possible? That in just three days my kitchen goes from Martha Stewart to kitchen of the depraved. I walked into the house tonight, shuddered and thought what kid of people live in this squalor? At least I have proof that the fruit was consumed.

So I cannot wait until Sunday morning. When I can walk into my kitchen and not shudder.