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 wish

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Dear Abby,
Today you started fifth grade. I’m amazed by you. You still retain the little girl I love as you grow into a preteen. You are not perfect, but neither am I. Although I wish you were not such a picky eater I know that, like me, you will one day eat a meal without me saying JUST TRY IT.
In other ways you are too perfect. It is like you were created just for me. You make me laugh. Although you refuse to make your bed, you make Boo’s for her every morning. 
I am amazed by your kindness, your patience and your Abby-ness. 
You astounded me at Welcome Back Night at your school. When Boo was upset because you were going off with your friends, you came back. You took your sister by her hand and introduced her to everyone you saw. You navigated stairs (and I am sure stares) with your sister. You took her to the bathroom and assisted her. I do not know any other child your age that would help their sibling in the bathroom. Or include her with your friends. Help her drink out of a water bottle or hold a piece of pizza that she wants to eat but refuses to touch.
You made my heart swell ten sizes too big when I overheard you say, this is just what big sister’s do.

What amazes me is that I never have to ask. EVER. You just do what you do. I do not know what Boo did to get such a fantastic big sister. But I am very thankful.
As you grow you continue to amaze me. I love that you still want to hold my hand. That you still need me. Too soon I know the day will come when I will embarrass you with more than just my killer dance moves. I worry about that day. The day when you are no longer mine.
I want you to know how special and unique you are. How proud I am of you. When I see you interact with adults and your peers. You have kindness within your soul and you never hide it.
Thank you for all that you are. As you enter fifth (gasp!) grade I have five wishes for you:
1.   That you surround yourself with friends like you. Friends that are kind, forgiving and have empathy.
2.   That you do not fall into the tween trap of boys, music and makeup before you are ready.
3.   That you remember it is okay to march to your own beat.
4.   That you keep one foot in the magic and one foot in the discovery.
5.   That you hold my hand just a little longer.

Love,
Mom

My Challenge: Echo

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Today’s My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue. 

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My biggest challenge and my greatest love…
When Kerri asked me if I would be willing to participate in this series, I was ecstatic. I think that opening up and sharing our struggles and challenges is a great way to help each other grow as parents.
My son. My handsome, smart, charming and stubborn son is on the Autism Spectrum. He has PDD-NOS (formerly diagnosed as Asperger’s Syndrome). He is extremely high functioning, but also has a lot of sensory processing and social interaction issues.
My daughter. My gorgeous, intelligent, dramatic and independent daughter is NT (Neuro-Typical). She has hit all of her milestones and continues to grow and progress.
My biggest challenge is also my greatest love, raising my two children. Raising a child on the spectrum is hard for anyone, add in sibling rivalry and it can be complete chaos. I have to navigate so many issues, that at times, I feel like I am nothing but a referee.
Try dealing with the emotions of an over dramatic 8 year old when he realizes that his 3 year old sister is faster than him. Try dealing with his frustration when his 3 year old sister starts riding her bike and he cannot.
Imagine trying to get your strong-willed 3 year old to stop touching her brother a certain way. Imagine trying to break up a fight between a 3 year old and an 8 year old because the 3 year old took her MegaBlocks back.
Feel the heartache when you watch one child achieve something that the other could not. Feel the confusion because you don’t want to treat them differently, but you have to because of age. Feel the frustration when your 8 year old constantly yells at your 3 year old and your 3 year old constantly pushes your 8 year old’s buttons.
My children are my greatest love and I would not change either of them. However, trying to raise them together, equally is truly my greatest challenge.


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When Echo sent me her post she wondered if it was “right” for the series. After reading it I replied it was freaking awesome. I think all of us with multiple children have the challenge of raising them the same but different. Add in a disability and YIKES it can sometimes (most times) seem overwhelming. 

Thank you, Echo for sharing your challenge today. You can read more about Echo at Mad Mommy where she shares everything from the 100 lb challenge to home schooling. 


What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com


Boo rocks

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A few months ago Boo began serious toe-walking. She could be a contender for the Boston Ballet. It was concerning because this is also a serious sign that her spinal cord had retethered. The neurourologist (yes there is such a thing) and the neurologist told me to call the neurosurgeon ASAP.

Like today.


I was floored. I was told that there was a slim chance Boo would need further surgery. I admit it, I broke. A little. Okay, a lot. Then I called the neurosurgeon and asked for an MRI. I was told that she had to be seen by him first.

And this ladies and gentleman is why healthcare is so expensive. But that is a rant for a different day. We finally got an appointment with the neurosurgeon who told me that there was a ZERO percent chance his surgery resulted in a retether.  Since I really do not care for the man I doubted him (gasp!) and explained the MRI was a non-invasive procedure. That although she would need to be sedated and there were risks associated with that sedation there was more of a risk that if her cord remained tethered we would be facing nerve-loss, muscle loss and a host of other scary things. So order the test.

I won or he conceded just to get me out of his office. Either way Boo got her MRI. Unfortunately for her it was scheduled for 2 pm and she could not eat after midnight. Then her test was postponed until 4:30 pm. Most adults I know would not be able to go 20+ hours without eating. In solidarity I did not eat either. I was crankier.



Boo was a trooper. She didn’t cry at all. That is until the first IV attempt failed. And the second IV attempt while successful was a tad traumatic. Once medicated she fell asleep mid-scream. 


She woke up in mid-scream. It was the first time she was terrified of a nurse. I don’t know who was more heartbroken, her nurse or her. The nurses at Children’s are simply the best. They gave her what comfort they could (me) and kept her safe. Boo calmed down, we went home and waited to hear from neurosurgery.

And waited.

Tired of waiting I called and found out that I was wrong. The neurosurgeon was right. HIS surgery didn’t result in a retether. She will need to see orthopedics and do more stretching.

But Boo doesn’t need more surgery. So he can be right and I will take the hit. 



Because she doesn’t need more surgery. Best end of summer news ever.

TBT JUMP!

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It’s Thursday so it’s a throw-back day. This post was originally published on 19-APR-2013 as part of the 5-minute series. Where you are given a word and just write, unedited, for five minutes straight.



The prompt: JUMP


Ready, set, go

Dear the Fellow that I fired, remember when you told me that Boo would never walk, talk, know us. She was six-months old. You told her father and I that she had a brain disorder which meant her brain pattern was ‘too slow’. 

I went home and cried. Then I call your boss. You know the head of Neurology. Who told me you had no right, no freaking right to tell me that my daughter might do or not do anything. She has an unknown genetic disorder NEVER SEEN before. That very rarely do you take MRI’s of 6-month old brains. Exactly what would he have compared to Boo too? 

So he told me you were off our case. We got transferred to another Fellow. An awesome doctor who believes in our daughter.

Four years later, after 9 months of therapy Boo jumped. Yes, you freaking jerk, my daughter not only laughs, signs and talks, knows her sister, her father, myself and HER FRIENDS. My daughter also walks and loves her puppy!

Boo not only loving but kissing her puppy!

And this week not only did she jump, she jumped over a line.

What you took for granted in your knowledge of all things is that you knew nothing of my daughter’s strength, joy, heart and determination. You did not know that she has a circle of people who make her more than you ever gave her credit for.

Boo jumped. And I hate that for a minute you made me think she wouldn’t.

Damn you, you made me doubt my daughter. Just once, at 6m of age. After I talked to your boss, I never did again.

Boo jumped.

END

Darn it I am out of time! I had so much more to say on this subject. Obviously I have some unresolved anger at that Fellow. But I am also thankful for the Fellow his boss assigned Boo’s care, who is now an MD. This wonderful doctor who saw the potential in Boo and never told me to give up!

The Land that the Internet Forgot

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You might have noticed I’ve been, ahem, quiet the past week or so. I had a very good reason. I visited a place where the internet hasn’t been invented yet. It’s the best vacation ever. 
Every year we take the girls (and Bailey) to the mountains of Vermont with 20 or so friends. It was great. It was filled with the sound of laughter. And because I am not an idiot, it was also filled with the sound of Sofia the First on Boo’s IPAD. There wasn’t internet but thank the Good Lord there was power.

And bathrooms. And showers. 

There was also seven days filled with friends, freedom for Abby, river rafting, hiking and just getting away from it all. This was our morning view. As in roll over, open eyes and see paradise.

There was also a husband and nephew who decided to go kayaking in the very LATE afternoon. Of course not having any cell service meant no one could check in and let me know that the river was a tad longer than expected and they would not be meeting us at the designated spot/time. Thankfully I did not need to find service and call David’s sister to inform her that I lost her favorite brother and son (who may or may not be her favorite depending on the day). Both boys were returned before the search party was created with hilarious stories of their adventure.

Bailey: Bye Dad, hope to maybe see you again

When you camp with 20 of your closest friends and there is only one child Abby’s age who happens to be her favorite friend, you make her summer. She and her friend were allowed to travel between camper #1 through camper #20 as long as they checked in. We heard, as she ran past: going to Mrs. George, going to Mrs. Black, Going to E’s Nana, Going to HERE. For one week Abby gets to have fun, not have to include her sister and experience being a kid of the 70’s when you were outside all day and every person in the neighborhood was responsible for you. No TV, no electronics just fresh air, rafting, playing in the river and being a kid. 


Boo is included not because of an IEP but because she is adored. There was also ice cream, fireworks, the best community dinners and enough laughter to wish next year could come faster than Christmas.


We hiked a waterfall. Well, we hiked. Boo had to be carried for 5 of the 6 miles as the terrain was a little unsteady for her. The last mile home she hit the flat ground running and I wished she would let me carry her again.


The reason, though, that this is the vacation I look forward to every year is that this is the one week where we are together. No distractions. No fire radio going off at all hours of the night pulling David away from his family. No Words with Friends pulling me away (okay, his is more important). There was no fighting over bedtimes, eat your dinner or practice your flute struggles. There were no therapy appointments, doctor appointments or similar tortures for Boo. 

For this one week we are a family off the grid surrounded by our friends enjoying the same experience.We are, for six too short days, a normal family. 

It was so hard to come home. It was harder to go back to work and stop being mom for 40 hours a week. I miss my girls. The minute we came home I found myself on e-mail, David turned up the fire radio, Abby had to be reminded to practice her flute and Boo returned to her appointments. 

Of course we have to return to the real world. As difficult as it is some days. Our vacation week reminded me that we have to remember to unplug less often and plug into our family more.




My Challenge: Lisa

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I am so happy to introduce you, officially, to Lisa aka Tia aka my BFF aka the person who has known me before mall bangs were popular and we wore our jeans up to our armpits. That one person who knows where the body is buried because she probably helped you put it there.

Lisa is mom to Owen. A boy who makes her play Lego’s, X-Box and Laser Tag. He also keeps her on her toes with his challenge. 




My Challenge: Food Allergies

We discovered our son, Owen, had food allergies when he was about two years old.  We had gone to a summer festival and were enjoying the music the Caribbean band playing when Owen began rubbing his eyes.  Shortly thereafter his eyes were swollen, so much so that they were almost closed!  Of course we panicked and didn’t know what to do.  I kept checking to see if he was having difficulty breathing, but he was not, so we left to get him some Benedryl.  On the way home, the allergy went away, but I was terrified of it happening again.

I kept trying to figure out what had caused the reaction.  He had eaten some French fries and a bite of potato salad that he immediately spit out.  After a visit to the Pediatrician, and then to an Allergist, we found out that he had several food allergies, including an egg allergy, and that that small bite of potato salad was most likely what caused his reaction.
I was angry when we left the Allergist’s office.  Angry b/c when he was a baby I thought I had done everything I could to prevent this.  I nursed, even though it was excruciating and did not give up even though I was told it wasn’t worth it.  I also made all of his baby food from scratch and made sure he only ate what was recommended by the Pediatrician and did not introduce high-allergy foods earlier than was recommended and none of that seemed to have worked to keep food allergies away.

Since then we have had to closely monitor what he eats.  I have to send in special snacks to school so that he can participate in his classmates’ birthday parties and other festivities during the year.  Some people, especially teachers, have been wonderful with this, calling me to see if he can have certain things because they don’t want him to feel left out.  Others just don’t get it and have even accused me of overreacting, but I would rather overreact than have him end up in the hospital or worse.

I have explained to Owen what he can and cannot eat and that he should confirm that something he is given from someone else doesn’t contain any of the foods he is allergic to and he really has been great about it.  I remember a couple of years ago we went to an outdoor event in the winter and someone was selling hot chocolate.  He walked up to the woman and asked her if there were any eggs in it.  It was so cute, but even though he is aware of his allergies and what he can and cannot have, that doesn’t mean that the person offering it is aware of all the ingredients.  Such was the case for Cameron Groezinger-Fitzpatrick who died after eating half a cookie that had peanut oil in it.  The friend who gave it to him wasn’t aware it had peanut oil in it.  http://abcnews.go.com/Health/Allergies/college-freshman-peanut-allergy-dies-eating-cookie/story?id=18723777.  

This is our greatest fear, especially as he grows up and is more apt to accept food from someone else. Unintentional exposure can happen so easily. One afternoon frosting a Gingerbread house with his cousin, Owen got frosting on his hand and cheek. He had an immediate reaction. His eyes swollen shut. We never thought to check the ingredients as he wasn’t going to be eating the house. 

I won’t make that mistake again.

Although Owen would say that it’s a pain to have to watch what he eats, especially when his friends are eating cupcakes and he is told he can’t have any because they are not sure what the ingredients are, he would also say his allergies don’t hold him back from living a normal life for a 7 year old, participating in birthday parties, karate, Cub Scouts, summer camp, etc.  I hope he will soon outgrow some of the less severe allergies, but he will probably have to deal with some of them for the rest of his life.

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According to FARE there are over 15 million that is MILLION Americans with food allergies. That is double the population of NY City. Every 3 minutes a person is taken to the emergency room due to a food allergy. That is not just the hives, but something bad enough to call EMS. The most common foods that cause 90% of reactions are: eggs, milk, peanuts,  soy and wheat. 

They are probably in every food in my kitchen. Food allergies can be mild or deadly. 

Food allergies are not just for the young. A friend of mine acquired severe food allergies when she turned 30. Before that she was fine. She expected grey hair when she turned 30, instead received an allergy to shellfish, nuts and get this garlic of all things.
To learn more about food allergies please visit Food Allergy Research & Education 
Not only is Lisa the best friend to hide the body with, she is also an awesome mom and photographer. Check out her photos at Lisa Perez Fine Art Photography. Thank you, Lisa for sharing Owen’s challenge and showing it is your challenge as well.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

TBT–Dear Ann

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It’s Throw-back Thursday. A day to revisit an older blog post. This one is from when I a was a tad, um, infuriated with a celebrity.



Originally posted 23-OCT-2012

Dear Ann,

May I call you Ann? I feel we can be informal since you feel so comfortable insulting my child. I mean, really, only family should be able to make us think that we are not good enough. On the other hand….

You, MS. COULTER, are not my family. You are not of my world, my life, my heart.

Because you, Ms. Coulter, from your bully pulpit are comfortable enough behind the camera. But have you ever had to face the affect of your insults and disparaging remarks? When you attack public figures, I usually give you some leeway. After all, they are grown-ups who have had to develop a thick skin in order to navigate life in the public eye.

But my child? My child, Ms. Coulter, does not and should not ever be the brunt of your pitiful attacks. Neither has her sister. A sister who knows that calling some one a retard is wrong but not why. You, Ms. Coulter, do not have to explain to your 9-year old that her sister is not retarded but intellectually disabled.

You see, Ms. Coulter, in your complete and utter ignorance, do not realize that when you call our President a retard (which by the way, should be treasonous no matter what your political leanings) you are not insulting him. You are, in fact, insulting the estimated 2.5 million US citizens you do not even acknowledge.

That is the sad truth, isn’t it Ms. Coulter? You do not SEE those who are intellectually disabled. You only see your own agenda and how to get your name in the headlines. Doing it by insulting my daughter and others like her, that is heinous.   

I know the arguments for using the word retard. I have this discussion with friends and family members. I am from the generation where you could call some one “gay” but not mean homosexual. I am from the generation where retard was an insult you called your friends in a lighthearted manner.

But, unlike you, Ms. Coulter, I grew up. And unlike you, I am lucky to have an intellectually disabled child who only knows love. But some day, unfortunately she and her sister will come into contact with some one like you. I fear that day. I fear the day when some one looks at my daughter and sees a RETARD and not a beautiful girl. 

I ask you, Ms. Coulter to look at this face:



and tell her sister that her beloved sister is retard. Because that is what you did when you thought you were insulting the President of the United States of America. 

From a mom who knows better,
Kerri

My Challenge — Lizzi

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Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.


My Challenge: Despair



Several hours ago:

My challenge right this second, as I write this in an empty house steeped in melancholy and shattered expectations, is not to go to the cupboard in the kitchen and fetch down that shining bottle from the top shelf.

My challenge is to convince myself that it’s a sufficiently slippery path to prove deterrent – that taking the edge off with alcohol isn’t the answer. At the moment the only thing holding me back is the knowledge that I’ll regret the number of calories it contains. Ah serendipity, thou art disguised within even the soft and pudgy linings of low self-image.
My picture speaks for itself, but it doesn’t say how interconnected so many of those things are. It doesn’t tell of the (thus far) unbreakable bonds between an abusive childhood and my inability to disconnect and stop assuming responsibility (or blame) for aspects of my current situation. Or those between spousal illness and miscarriage. And infertility. And rejection, leading to further low self-esteem. And depression, which is riddling our relationship like woodworm, gnawing away at the things we thought we held dear, and now call into question, time and time again because “what if we hadn’t…”

It’s harder after the high of such a wonderful, fleeting day, where a bloggy friend and I met in person for the first time. We stood in glorious sunshine on the beach and let the warm ocean bathe our feet as we talked and talked. And later we went for cocktails and gelato and things were wonderful. And now she’s gone.

And it’s harder because the day before that (my fourth anniversary) I lay crying, once again rejected (because his illness allows him no other option), utterly desolate and we discussed whether or not our marriage would last. Because we ‘clinked’ our fries together in the restaurant in a desperate show of silliness and recognition of the occasion as tears bathed my cheeks and his eyes turned to pools of despair. Because we had cocktails and got buzzed and all that went away for a while, and with the corners of the situation tamed by tipsiness, we hugged and laughed and the shit went away for a while.
And it’s hard because I have to find a silver lining and even though the sun is up and Maslow would be convinced I should be content, at least, I really, really, really want that drink.

Now:

Writing is cathartic anyway, but particularly from a place of hurt and desperation, because it forces some of the challenges to come into stark clarity, their contrast perhaps shocking, as I lift them out of the tangled mire of mind, determined to examine them in the light of day and describe their form.

In writing this, I was able to trace those unbreakable strings which bind me so tight. And having traced them, I was able to explain them to Husby, who *listened* and cried with me as he realised the extent to which his illness and my smorgasboard of challenges crash headlong into one another, leaving us both trainwrecked and licking our wounds.
I reached out, not for a bottle in the end, but for a friend, who was in the right place at the right time to talk me down and just hear me, and make me feel less alone.
The aloneness is hardest, especially when part of what’s trapping you is your own mind, your own thought patterns and your destructive, determinedly negative perspectives. In point of fact, the (seemingly relentless) shitstorm of life is one of the main reasons I’m part of a new blogging initiative – the SisterWives (http://www.sisterwivesspeak.com) – a group of writer friends whose collective history reads like a manual for surviving almost every kind of crap that life can throw at a person. We are damaged goods, but determined to live life in Silver Linings, and *somehow* turn our hurts to helps. We don’t want others to feel alone. We want to find strength in being vulnerable and honest and sharing our truths in the hopes that they’ll somehow be useful to Someone Out There.

Our motto, (the former part I struggle with, but am trying to take on board): Alone we are enough; Together we are stronger.

Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

TBT–Just deal

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Throw-back Thursday, this post was originally published on 10-OCT-2012. It’s about the time Abby became Boo’s advocate. For real. As in stand up for her sister to adults. This was probably one of the first times I realized that Abby was a warrior sister.




Boo had a tough week, so far. This weekend was wonderful, visiting my parents. The girls were spoiled for the short time we were there. Even though we were only gone for a couple of days, it was enough to mess with Boo.

To add to her difficult week, yesterday not only did she have to travel 3+ hours to Children’s for a GI check-up afterwards she had to take Abby to an orthodontist appointment. After spending 12+ hours in the car driving home from being spoiled, to spend 6+ (round trip) hours in the car then have to pick up Abby and just to sit in another waiting room for Abby was a bit much to ask of her.

While in the orthodontist waiting room, Boo was….shall we say….exuberant in her joy over a book of puppies.  I don’t think the receptionist or the other families in the waiting room have ever experienced such exuberance. I was just happy that Boo was in the stroller (although I had a funny moment when I imagined their experience of an unconstrained Boo). Rather than being embarrassed I was so proud at how Boo was labeling the things in the book. Okay, I was embarrassed at the volume of her expression. But I was proud too 🙂

When it was time to leave, I asked if there happened to be a handicapped entrance/exit. Abby and I had to carry Boo’s stroller up 5 steps to enter the office building. The look of utter surprise from the receptionist face was priceless. Turns out, the building is not handicap accessible. Something that would not have occurred to me pre-Boo.  Now we are lucky, I could have either carried Boo into the building or she could have walked. But that would have meant that Boo would be racing around the office (as would anyone after spending so much time in a car seat). So instead, Abby helped me get the stroller up and then down the stairs.

As Abby and I were carrying Boo’s stroller back down the stairs she commented on how Boo was so loud, she could hear her way in the back of the office. I asked if the doctor said anything about it, here is Abby’s reply:

They asked if the person making all that noise was Boo and I said yes.  Then they said, wow she is really loud. I told them she was special needs–just deal with it.


Any embarrassment I may have felt faded in that moment.  Abby is right, we have to deal with their building not being handicap friendly and they just have to deal too.

Sometimes Mom is wrong

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About a year ago I decided to take up running. Not to be running from a serial killer but in an attempt to gain some better looking legs and mental clarity. While I have not gained either, I had really begun to enjoy running. 


Thanks to Boo’s therapists, I discovered the Obstacle 5Ks. My mother thought I was nuts. Didn’t I remember that I trip on flat pavement? I do fall, often. However the team work and camaraderie at the races are beyond anything you can image.  They became addicting. I have since done four obstacle races and have two more this fall.

I even got David, my nephew and his girlfriend addicted. Over the weekend we ran the Renegade Playground. After four months on the waiting list, this was the first race I was running for my buddy. 


There was mud. A lot of mud. For a girl who really doesn’t like to get dirty can I say it was the more fun than you can imagine? 



Plus there were balance beams. 



I survived the entire race without a boo-boo. Not one scratch, bruise or concussion. Our team finished in 53 minutes, leaving no one behind. I even managed to survive the four foot walls.

 It wasn’t until Sunday that I was in pain. Not from doing the run. From doing dishes. I managed to slice my thumb open.  I ended up in the ER getting six stitches. And there was absolutely no wine involved.



This is what happens when you recycle. Here I was being a good person, cleaning out the soup can before it went to the recycling. I end up getting stitches. In the ER for three hours with a $90 copay. That equals out to $15 a stitch.    

Sorry mom, but you were wrong. I was perfectly fine and undamaged doing the obstacle races. My next race is Sept 6th. I’m not doing any household chores the week before I want to be healthy for the race.