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’m a having an epic fail

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I am having a fail of epic proportions. Okay….that’s an exaggeration. But it’s bad enough I have completely thrown whatever New Year resolution I had thought of out the window. Holy crap, I threw the reservation out the window faster than Boo throws a shoe.


But Lent? Who cannot give up something for 40 freaking days? Who….me that’s who.

Every year I have given up something for 40 days, the Lenten fast. I have given up chocolate, Diet Coke, swearing, sweets and alcohol (and no I wasn’t even pregnant!). This year, not one freaking thing. 

Why? I have plenty of excuses:

I was going to give up Facebook. But then I “remembered” I’m the PTA person on Facebook. This blog is on Facebook. Most of my life is on Facebook.

I was going to give up Twitter. But then I realized I am barely on there anyway and am just learning the Tweet-ropes.

I was going to give up wine. Then I thought, who am I kidding? And what God puts St. Paddy’s day smack in the middle of Lent.

I was going to give up M&M’s. But really, how bad are M&M’s?

I was going to give up TV. Hello, Bruin season.

I was going to give up popcorn. But it’s what’s for dinner 4 out of 7 nights. (me, not the kids)

I was going to give up reality TV. Then the Real Housewives of NYC were finally back on.

I was going to give up spending non-essential money. But then a friend said let’s go to dinner.

In the end I realize what I should give up is rationalizing, excusing, the I’m sorry but my house is just a mess….

So that’s what I am doing. Yes, it is one week into Lent. But I am giving up. I am saying this is me:

Kerri. The girl who likes the Bruins, M&M’s, Facebook, Reality TV and wine. Especially on St. Paddy’s day. Who can expect you to abstain on the national drinking holiday.

In a blink of an eye

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Just yesterday I gave birth. Just a night ago I rocked a baby to sleep. At midnight I dealt with my baby’s first fever. At breakfast I watched my baby take her first step. At lunch I heard her say her first sentence. At twilight I watched her ride a bike for the first time. At dinner we spoke about fractions. At bedtime she brushed her teeth without prompting.

That is how quickly a decade can go. In a blink of an eye I went from being worried about a pregnancy test to being worried about doing Every Day Math with my child.

My favorite decade was this one. The one when my little girl went from drooling, to teething, to eating to talking non-stop.

My favorite decade was this one. The one when my little girl learned to roll over, sit up, crawl, walk, run and swim.

My favorite decade was this one. The one when an imaginary little sister was replaced by the in real life one. 


My favorite decade was this one. The one that led me from reading bedtime stories to watching my child fall in love with the written word.

My favorite decade was this one. The one where princesses and fairies are slowly replaced by horses.

My favorite decade was this one. The one where Santa Claus, the Easter Bunny, Leprechauns, the Tooth Fairy and Tinkerbell existed.  

My favorite decade was this one. The one where Sesame Street was replaced by Word Girl that was eventually replaced by Shake it Up. (I kind of miss Sesame Street)

My favorite decade was this one. The one where the girl who would only wear dresses (that twirled) will now only wear leggings and T-shirts. 

My favorite decade was the one that went faster than my 8th grade history class. The decade that showed me what was important in life. The decade where I received not one but two beautiful children. The decade that hasn’t happened yet. The decades still to come where I will watch them grow and flourish and become the best that they can be.

Photo Credit: Family Tree Photography


My favorite decade was this one, what was yours?

Finish the Sentence Friday

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Stop staring. I think to myself. Stop whispering. I think to myself. I know my child isn’t behaving. I know she is disturbing Mass. I know she just pushed your son. I’m sorry. I really am. But stop.

You don’t have to point. You don’t have to say that your children knew how to behave. That they sat quietly with a book. That they were polite and perfect. You don’t have to tell the waiter that dinner was lovely but you wish they would seat disruptive children in another part of the restaurant.

Trust me, I think that is a fabulous idea. Take the old smoking section of the restaurant, make that the adult only section. (Cause let’s face it the smoking section was always in the bar). Make a section where the families can sit. Where moms and dads can enjoy a meal they did not cook or do the dishes when the child didn’t even taste the meal. 

Where they would not feel judged. 

What I really want to scream out loud is WE ARE DOING THE BEST WE CAN.

It’s been a long decade, year, month, week, day, hour, minute. We are holding onto our sanity by a thin thread. You might believe that your child was a perfect angel. That they never raised their voice inappropriately. That they sat quietly in Mass. That they never pushed a friend or hit a sibling.  Your child would never have colored outside the lines (or on the wall).

The truth is, just like childbirth, you have forgotten what it was like to have a young child. That you were once like us. Parents burnt out by work, family and homework. You are looking back at the good times of being a parent. The time when you son got an “A+” or your daughter kicked the winning goal.

You are forgetting the pain of doing fractions. The fight to brush their teeth. That beds will be unmade. That there are temper tantrums (sometimes being performed by the parent). That we are all tired, hungry and just done. So we went to a “family-friendly” restaurant for respite.

And got spite instead. As you sat in the booth across the aisle and sipped your wine. I did feel bad when Boo screamed (with joy, mind you) so loud over the pop corn you were startled and spilled your wine. At least it was white and will not stain. When you cringed because Abby was speaking in her outdoor voice. That your experience was spoiled by Boo hitting Abby because she wanted to use the crayon Abby was currently holding.

I get it. You were just looking for a night out as well. You were not expecting to be seated across a family whose children were really excited about cheese & crackers for an appetizer. 

You could have ordered me a glass of wine, with a kind nod of a survivor who had been there, done that and survived. Instead you remarked, loud enough to be heard, that when your children were young they knew how to behave.

I really wanted to scream out loud, LIAR. Your children were probably spoiled brats or bullies or the neighborhood menace. But I didn’t. Instead I mentally thought how great it was that Boo enunciated pop corn for the first time. I blocked your stare of condemnation. I ordered my own (second) glass of wine and planned on tipping our waitress well, really well.  

I promised myself that in 20 years when my children are grown and I am seated across a mother trying to do her best I will order her a glass of wine in your honor.

Finish the Sentence Friday

Tell me, how would you finish the sentence, What I really want to scream out loud….

3.5 I took the pledge. Will you?

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Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG’s and an MRI of her brain. They told us she had a “slow” brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don’t use the word retarded any more. They use intellectually delayed.

I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.


The Merriam-Webster Dictionary defines retarded as “sometimes offensive : slow or limited in intellectual or emotional development”

Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped. 

Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.

My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition. 

Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.

Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting. 

They used it anyway. 

When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.

Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:



And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.

When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?


Dear Abby

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Dear Abby,

When I had you I was terrified. The hospital nurses actually wrote, failure to bond in our chart. I was so sure I was going to fail you. Or worse, hurt you. You were an emergency c-section because (and I quote a doctor here) my body wasn’t meant to survive childbirth. I thought that meant I wasn’t supposed to be a mom.

In all honesty you were all I needed. You taught me how to be a mom. Not a perfect mom by any means. I did not think I had the love, patience or endurance for another child. You wanted a little sister so badly. You even had an imaginary friend whose name was simply “imaginary baby sister”. 

Then there was Boo. From the beginning you at just five years old were my rock. You, my dear sweet child, showed me that I was strong enough to handle two daughters. You, my sarcastic truth-teller were there to keep things in perspective. You, my great educator taught others how to care for Boo. 

The time you told Dawn that Boo couldn’t have peanut butter because she was allergic to dairy. The time you told a teacher that Boo was perfect, she was just in the hospital. When you taught a friend that being having a sister with a “funny pattern in her brain” just means that your sister takes a little longer to learn things. The countless times you practiced “I LOVE YOU” with Boo never knowing that is my secret desire for her to tell us she loves us.

You, Abby, are my hero. I wish I had your grace, your patience and your sense of self. You are confident in ways I can only strive to be at 40+ years. Your imagination astounds me. You are so brave, trying things that would normally terrify me. You are your father in the ways that make me love him. And in the ways that make me want to strangle him. You have an old-world soul mixed with a new-world outlook on life. You are me in the ways you are picky about eating food and in the way your sense of humor aligns with my own. You are so beautiful in your smile, your laughter and yes, your sarcasm. 

On Saturday morning, I awoke exhausted. I lay in bed and listened to Boo over the monitor at 6:30 am. She was gleefully calling your name. As I got out pretended to get out of bed to get her I heard another voice. Yours. You entered her room and quietly said, “I’m here”. You then proceeded to take her out to the living room. You got her IPAD and gave me another hour of semi-rest. You got her muffins and only called to me when her diaper exploded.

Mom I’ll do a lot of things but I won’t take care of that!

That afternoon you received your first phone call from a classmate. You went on your first ever sleep over where I did not know the parent. I didn’t sleep that night for another reason. I was worried of course. But also marveling over how quickly a decade has gone by. How the little baby I was terrified of now completes my heart in a way I never imagined. The house is empty without your presence. I am astounded by how you have grown into such a sweet young girl soon to be tween. The excitement in your voice when you called to say good night. This is the girl you would be, maybe, if you didn’t have to tailor your life to your sister. Not that you complain, ever. But I promise you, I know the sacrifices you make for Boo. That you cannot join girl scouts, after school activities or miss birthday parties because we have Boo-centered appointments.

So thank you, my sweet Abigail. For being you. For giving me an extra hour of dozing. For giving me peace. For sharing your dreams. For giving Boo your unquestioning love. For just being your awesome self.  

Keep living the dream, my Abby. When you obtain world domination this world will be a better place. I simply cannot wait to see the woman you will become.

Love, 
Mom

PS you are still not getting a pony

Never ending journey

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It wasn’t what I expected. For some reason when I was little I thought all I have to do is survive until I am 18. Then life would be perfect. I would be all grown-up. I would answer only to myself. I would be respected. I would be content. I would stop searching. I would know that this is where and when I was supposed to be.


As a little girl I knew just how my life would be. I would graduate high school and viola be a grown up. I would have a great job (without any training mind you). I would have a home, a husband who doted on me and children who were well-behaved, respectful and put me on the throne I deserved to be placed upon.

I had no idea that the throne would end up needing to be cleaned so often. With bleach. But I am getting ahead of the story.

I turned 18 but had a few more months of high school. No moving out for me. I did not apply to college, who knew there were deadlines? Instead I ended up at a community college for about two months. I met a boy.

Boys. I tell you it all goes wrong with boys. I thought for sure this was my prince. And he was for a few years. One would think that moving in with a boy made you all grown up. But it doesn’t. 

The boy disappointed. I am sure the girl disappointed him as well. We failed one another and we moved on. I was sucking at this grown up thing.  The silver lining years later was knowing that while we failed we did not mess up one another. We didn’t make the mistake of getting married and having children with a partner who really never could be the partner we needed.

A few years go by. I get my act together with a real job and a semi-real apartment. (Man I miss that apartment). I met a man. A good man. A man with a house. A man with a job and savings and a budget. He was (I thought) grown up. We dated. We got a dog. We moved in together. I learned he wasn’t quite grown up, but neither was I.

We got married. Had a child. Built our dream home. Continued working at a job I enjoy. I went back to college and although that did not change my career. We had another child. The first child dog went to doggy heaven. A few years went by and we got another dog. 

Life continues. 

I hit the big 4-0 more than a few years ago. Certainly now I am a grown up, right? Except I am still not. I worry if people like me. If I am accepted. I still am looking for that magic wand that makes life a fairy tale. I worry that I am failing this life. That I am failing that man and the child and the dog. Yes, I worry that I am failing the freaking dog. I need reinforcement from friends and family that I am doing a good job. I worry that I am not career-orientated enough, that I will never succeed or move “up the ladder”. I lose sleep over knowing I am not the parent I am supposed to be. I try to give my best and wonder if I will ever be good enough. At anything.

The most unexpected part of being a grownup is that I never feel I am one.
 

Finish the Sentence Friday

Will my child cause your favorite teacher to be laid off?

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Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  


Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.  


The Mommy War with herself

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The other day Rachel from Tao of Poop had a wonderful post about how she wonders why she says she is JUST a stay-at-home mom. See, Rachel brings up a great point. What happened that made us think poorly of ourselves, and others, for being a stay-at-home mom.

Quite frankly I blame ourselves. We women are to blame for the mommy wars. And I am not talking about the war between the stay-at-home and working mom. But the war we have with ourselves.
The feminist revolution happened when I was too young for it to impact. When I had Abby you fell into one of two categories: the stay at home or the working. One of us definitely looked down on the other. But for different reasons, I think, at least for my generation.

There is this theory that the SAHM (crappy acronym by the way) is the lucky ones. We working moms think their houses are spotless, their kids are well behaved (and probably don’t watch TV) and they have real family meals every day. We also think you could drop by and use their bathroom and they won’t be running in to give it a quick scrub down first. Working moms, at least this one, views the SAHM as their superior, falling just behind those fools saints moms who home school. We feel they have the patience we could never attain.  

In truth, the stay at home and the working moms are equals. We are all fighting the same battles. We are trying to manage our house in this 24-hour world. All of us at some point have hidden in the closet eating the last M&M. We are the CEO of the house, the Keeper of the House, the Chief Financial Officer of the House, the Cruise Director for every day off/vacation/snow day, the Executive Chef, Homework Tutor and Head Stylist/Fashion editor. 

Where a SAHM feels she has to apologize for being “just” a mom, I feel I have to apologize for working and not being there. I am not at the girls school parties. I am not chaperoning field trips.  I am not doing a project for science. My house is never company clean and some days (gasp) my kids wear their pants from the day before. I drop Boo off and feel that I am “just” working when I should be with my child. I rarely meet Abby’s bus in the afternoon and feel guilty that I only see her for two hours before bed. That those two hours are usually filled with screaming and crying over math homework doesn’t help the guilt.

The Mommy Wars suck. But the war we create in our own heads? The guilt we feel by whatever choice we made, that sucks more. 

We are not just moms. Not anyone of us. I am declaring a truce in the Mommy War. We are no longer thinking poorly of ourselves. We promise to end the judgement of how we are doing by the mom next door. We will embrace who we are, dust bunnies and all. I declare a new mantra:

I’m a mom, no qualification necessary.

Who’s with me?



Small

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This post is part of Lisa-Jo Baker’s Five Minute Fridays. Where you take 5 minutes and just write. No editing, no second guessing, no censoring. Ready, set, go…

SMALL

I sometimes feel so small as a mom. It doesn’t help that I am petite. But I feel small when I do not have the answers. When I wonder am I handling this discipline issue the right way. When I look at how my children love me and feel so small and unworthy of their praise.

I feel small when I think about all of Boo’s varying issues and science doesn’t have the answers. I feel small when it seems the next step is to high for me to reach.

I feel overwhelmed and so small and so inadequate as a parent on days when I cannot figure out the math homework. When I do not keep the house as neat as I should. When I am at work and the girls are on school vacation. When I make cheese, crackers and fruit dinner because I just cannot face cooking one more meal.

But then I look at my girls sleeping and my heart instead of being to small grows 10 times too big as it explodes with love for these two little girls who have changed my life in ways I never imagined.

I grow larger than my height when I realize how these two little girls have changed me. How I am more vocal, more confident, more than I ever dreamed motherhood would be.

I no longer feel small.

STOP

  Five Minute Friday

It’s okay she is turning colors…

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Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.


Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!).  This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later. 

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:
  

This is what Boo has and this is how we are going to treat it.