Category Archives: warrior mom

When children are denied an education

There are 62 Million girls around the world who are not in school.  Think of that for a moment. In this country we take education as a right, something a lot of us take for granted. We believe that all should have access to preschool through high school.  There are many of us who believe college should be included in that matrix.  Yet world-wide there are 62 million girls who have no access to education. They are illiterate, uneducated and financially dependent on others. Education is a known factor in advancement yet is denied to young woman around the world. Sometimes through circumstance, most often by men who fear the change women challenge the world to undertake.

A girl without access to reading, writing and arithmetic is more likely to end up in an abusive relationship, motherhood before she is emotionally ready and in poverty.  Want to stop terrorism? Educate the poor, the disenfranchised and the children of the world. Let them understand that the world is more what they see out their window. Malala proved that one girl’s education can give voice to a movement of change. Once their minds are awoken, young women’s voices cannot be silenced. They become mothers who will impart the importance of education to their offspring.

With access to education, young women across the globe will affect change. This is not just women in underdeveloped countries, but here at home.  According to PEW Research only 63% of US high school women go on to secondary education. Some of the 37% decide not to go further because they go into trade, the military or for whatever reason decide not to go to college.  I am willing to bet that out of the 37% of high school girls do not go to college due to circumstance. Looking at colleges is not a financial undertaking most of us can afford nor have the credit rating to achieve. If your parent did not go to college, you are less likely to see the value a college education can be to your life.  Children of lower-income single-mothers are less likely to have the opportunities for higher education. A recent study showed that 100% of former welfare recipients that receive a four-year degree and 82% of welfare recipients who received a 2-year degree stopped relying on welfare support.

In 2013 our country had 10.9 million school age children living in poverty.  Unsurprisingly, 40% of US children living in poverty are unprepared for school.  A staggering 31% of US children without a high school diploma will continue to live in poverty. Compared to just 20 years ago, the rate of children living in poverty has increased and the gap of income inequality continues to grow. Their children will repeat the cycle, unless change is made and education becomes a priority.

Education breeds personal power. If we want to see more women CEOs, leaders and Heads of State we need to educate them. Not in our own backyard, but in every back yard. I do not want women to overtake men; I want women to work alongside them. Equal partners effecting real change to leave this world a better place then we found it.  Advances in science, economies, living conditions and education benefit all of society. We need to stand with the United Nation’s stance that education is a human right and a “driving force of human development”.

When our youth are educated homicides are decreased, crime is lessened, reduces infant mortality and teenage pregnancy. Famine and world hunger can be alleviated. Terrorism loses its footing when those being suppressed are educated on how to make their voices resonate across the lands.

The US Peace Corps is collaborating with USAID and the First Lady to work together in educating girls, one girl at a time, through grassroots efforts. Volunteers committed to teaching all children. They understand that with education comes change, and maybe peace.  It’s time to get the facts and be clear: education should be a fundamental right of every child. To learn more about the initiative Let Girls Learn please visit their website at: https://www.whitehouse.gov/letgirlslearn

Name change

At the beginning of the summer we took Bridget to see a Specialist 20 hours away from our home in the hopes to find an answer to Bridgetitis. We had gone on a search for our own Dr. House. We allowed them to perform Exome sequencing, where Bridget’s DNA would be (in layman’s terms since I really am not a scientist) broken down and reviewed by computer strand by strand allows the scientist to discover where the gene may have gone awry.

We got the results. Finally. Continue reading

TBT–Just deal

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.

Sorry I don’t have a process.

My first ever for-real blogging friend Kristi recently tagged me in a post for me to explain my writing process. I thought it was cool she thought I had one. Kristi is not even in the same stratosphere that I am in when it comes to the blogging world. But she pretends even though she started blogging three months after me and then became wicked famous we are on the same planet.


Kristi is the mom of Tucker, a quirky artist, the founder of Our Land (which I get credit for telling her to go for it) and the person most likely to be sitting next to you in jail after a Billy Idol concert. 

Okay here are the questions I am supposed to answer. 

1. What am I working on? Well I was working on trying to do the Twisted Mix Tapes correctly for my friend Jen Kehl. But then she got retired the series. I hope it wasn’t my fault. It was either that I messed them up for finally got them right. Either way I have some Catholic Guilt going on about the end of the series.

Seriously though, I am working on making the What’s Your Challenge series a phenomenon online and in real life. I love that people are being so open with how we are all so freaking similar in our struggles. That all of us have a challenge (or two). But that our Challenge doesn’t define who we are deep inside. I hope it makes someone stop for just a moment and instead of assuming or judging they stop and say, “how can I help”.

2. How does my work differ from others of it’s genre? Truthfully it doesn’t. I think all bloggers share a commonality. We blog about families, for example. Even blogs dedicated to special needs have a common focus. For my blog I think it is a mix. I try to educate via the Challenge. I try to show that there is both heartbreak and joy in parenting Boo. I didn’t start my blog to share about Abby. But she is just too hysterical not to share. I also try to show that you can survive anything with a little bit of humor.

Most importantly I try to use my blog to show that you are never alone. You just have to find your village. Through this process my village has grown to be a small town of support. 

So I think my work differs because it isn’t about one thing. My blog doesn’t fit a niche. Instead I just share the everyday moments that make up our life with Boo. 

3. Why do I write what I do? I can’t help myself. That is the honest answer. David always says I have no filter. That carries over to my writing. I feel like I have to write. To show people that Boo is not just a child with special needs. That Abby is not just the perfect big sister but that she also comes by her sense of being sarcasm naturally. 

But more, that it is okay to break now and again. That it is okay to say this sucks sometimes. That when your child goes five years without a diagnosis and then some doctor says they think she is autistic it is okay to flounder. I believe so many warrior moms think they always have to be strong. I write to show them yes be strong, but also break and lean on others. 

I also write because David and the girls give me so much material. I mean really, how many moms can write about the time their husband who swore the math problem was a trick question? 

4. How does your writing process work? Okay, still cracking up that Kristi thinks I have a process. 

I seriously do not have one. There are just moments that resonate that I have to share. If the post is controversial I will usually send it to Kristi with a “should I” or “would you” hit publish? If it is a post I think will make my mom cry I send it to Tia first with the same question. 

I do not do a lot of editing. What you read is exactly how a conversation would go if we met in public. I want my blog to be authentic. To be me. If you saw me in the supermarket we could begin a conversation without awkwardness. There are some posts that I write in my head first. Then I get in front of the keyboard and BAM. It’s either great or not.

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And now it is time for me to give a shout out and tag my fellow bloggers to ask them about their process. I’m totally cheating and stealing Kristi’s questions. 

First up is my friend K from Transcending CP. K is beyond awesome. She is one of the reasons I started the Challenge program at Abby’s school. K is a college student who enjoys fried clams and making my heart grow ten times to big by reading her blog. If you ever feel that life might be unfair but it something worth living this is the one blog you should read.  

Next up is Kate from Another Clean Slate. One day I asked Kate to run a Mullet race. She ran but refused the mullet. Funny thing is she still talks to me! Kate is like me. Kind of an open book, which we both love to read. She is a super cool urban professional and writes about everything life is: wine, books, food and fun.

Last up at bat because they are hitting a home run is my boyo Isaiah at Isaiah Dot Com only because I have to know how he comes up with the way that makes his mom reply there is no maggot season. I cannot wait to see how he replies to some of the questions. He can think of it as summer homeschooling for kids of bloggers.

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And that is is. That is my writing process which means there isn’t one. With a few tags in the mix to keep the game going. Thanks, Kristi for being my go-to girl. 


My Challenge: Jessica



I introduced you to my friend “J” about two years ago. She was Boo’s Yogi before life got too crazy to keep up with it. I am happy to officially introduce Jessica, the mother of four beautiful daughters. She practices and teaches Yoga for the Special Child. In her “spare” time she organizes The South Shore Buddy Walk  and Co-Founded a non-profit Heart Beats for Down Syndrome

Her challenge?

My Challenge: Being Present

All of my life I have always looked to the future, planning and making lists, trying to be older. I used to sign up for things in magazines so I could get mail (at age 10). I couldn’t wait for responsibilities and bills and being an adult. I didn’t have to wait long. At seventeen, I became a mom, and not just a typical teen mom-but a teen mom to a baby girl with Down Syndrome.  This is not my challenge. As I write this, it’s nine years, four more daughters and plenty of bills later, and my challenge has nothing to do with the circumstances of my life. The responsibilities I always wanted are in abundance, and can be overwhelming and stressful. There are lots of things in my life that are challenging, but not internally, causing damage to my spirit. My biggest challenge is that I struggle to be present, to truly live in the moment.
I set my intention for this summer to be present, to be grateful for each moment, whether they are good or bad.  Not even two weeks in, I find myself at 8am counting the hours until bedtime. I spend so much time planning and rushing for the future: bedtime, back to school, vacation, that I am unable to be happy in the present. I have a history of anxiety and depression, and looking to the future has always been a coping mechanism for me. It has served its purpose, and I have better techniques now that I can use to get through rough patches. Unfortunately, as the saying goes: Old habits are hard to break.  By looking to the future, and planning, and making lists, I am depleting so much joy that is found in sitting back and watching my girls grow up and explore their world. Sure, I can get so much done when they are playing outside and doing crafts, but I lose out on seeing what interests them and how they accomplish things. I miss out on bonding and teachable moments by choosing to write lists instead of coloring and penciling in playtime rather then always making time for play. I want to wake up, and instead of rushing the day away, I want to be content just letting the day unfold and not view that as being unproductive. I may be too hard on myself, which is another challenge I face J, because it’s not like I don’t do all of these things, it’s just that I wish it could be more natural for me so that it could be more of an occurrence in my daily life.
There are so many times I am in the grocery store, frustrated and losing patience, when someone stops me and tells me I’m going to miss these days. I am grateful to these people, because I know it is true, but I usually have so much going on, I forget. By not being present in the moment, but rather operating on auto pilot, I miss out on what my girls are finding to be so funny and why they think the grocery store is a giant play place. If I were present, I might enjoy the shopping trip a little more (emphasis on little) instead of being preoccupied and snapping at them, which only leads to guilt and discontent on my end.  By committing to too much, and having to rush around, being present is impossible. I want to accomplish this goal by being easier on myself and reduce the expectations I set that cause me to lose out on the little things that happen when I am physically present but too preoccupied to notice and be grateful.
I’m sure that many people face this challenge, and some may not even view it as being worthy of such a title. It’s the way of life today.  For me, though, it is important and it is something I have been trying to work on, and fail time and again.  Again, setting the expectation for myself to change right now, this summer, and all of a sudden be present in every moment, is unrealistic. I just hope that some of the time, instead of rushing to the next moment, I will have the strength to just stop and watch it all unfold and find my happiness in that. 

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 Don’t we all, working moms, stay at home moms, dads, those without children…don’t each and every one of us forget to stay in this moment. This precious moment in time? We struggle with being HERE, right here watching the sunrise because our child woke up at five freaking am. Instead our thoughts race ahead to the coming day wondering how we are going to deal with this child who will be cranky in two hours. Rather than just enjoying the moment of their smile.

Even if it is five freaking am.

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

Being okay doesn’t mean being satisfied

A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, “T” wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder “T” gave me the  name of a doctor who might be willing to review Boo’s history. She may have found our Dr. House.


So last week we took a little 20 hour road trip hoping to find an answer to what is Boo.
We were worried, to be honest. David was nervous of walking into a Justina Pelletier issue. I was excited, we might have an answer. A little nervous that we were making a huge monetary investment in a hoax. Then I got excited again. Until the day we left and I realized that answer might be that Boo has only five years left of life. I wasn’t quite ready for that news. I sent a panicked text to Tia who replied: BREATHE.

Thankfully our fears never came true. Instead we were given a new hope: finding an answer. We might not, the doctor was very honest with us. However just looking at Boo she said she was confident that not only did Boo have a syndrome but that the answer was out there. Not five years from now, but as near as six months. 

For the first time in too long a Doctor got it. A Doctor looked at Boo from her beautiful hair, to her teeth, to her fingers and toes. A Doctor didn’t talk with just me, but looked at Boo and spent time (almost 2 hours) with her. She noticed that Boo grinds her teeth, that her hands/feet are slightly webbed, that she is the best hugger and has bowed legs. She took out her medical books, laid them on the desk and said, “I’ve seen this characteristic before….” and “wait let me think about this…”

She was also honest and said we might not find the answer today but that it was important to never stop searching. She understood the why of it all. That to get Boo the best life possible we cannot be in the dark. We need to be aware of what she has so we give her the best chance at living her life that is this beautiful miracle. 

This Doctor was clear: While Boo’s tremendous advances may have “ruled her out” for certain syndromes that might not be true. Without her therapies and schooling she would not be where she is today. Her advances might be in spite of a syndrome rather than because of one. She was also honest: She might not find the answer but that didn’t mean the answer isn’t out there somewhere. 

She solidified for us that we have to continue to be warrior parents. That the hole in her heart may be “trivial” but it is important, that her temperature issues might be manageable but they are important, that Boo has dysmorphic features and they are important. In her terms, Boo has “structural issues” and these are due to a genetic syndrome and not by chance. That we need the answers because one day these “trivial” issues might prove to be catastrophic. That it is our job as parents to continue to be the thorn in the medical establishment’s side. She understood on an intimate level that this is our child, the most important child in the universe. 

Boo will have to undergo more laboratory testing. The tests take about six months to result. The six months will be worth the wait, even if the answer is we don’t know. At least we found someone who won’t stop looking with us. We will know we have exhausted every option, for now. 

Maybe, just maybe I will have to change the name of this blog from Undiagnosed but Okay to something more appropriate.

Won’t that be a cool problem to have?

Thank you, “T”. You know who you are. Thank you for reaching out and “stalking” until you found me on Facebook to offer us a lifeline. When I was in despair and worried you were willing to take time out of your life to offer me hope. I won’t forget it and hope to pay it forward someday.

Thank you

While I have so much to be thankful for this week, I am only going to focus on one person who made a difference in Boo’s life.


Each and every person who works with Boo becomes a part of our family. I am not sure if it happens with other parents, I hope so. Because you are all so important to a child’s success. This is a special thank you to Emily (or Emmy as Boo calls you) who had to say goodbye this week. She is leaving us for a great new adventure and we wish her nothing but happiness. 

Emily you will be missed. You have been an integral part of our “family”. Boo’s gains is due to your being a part of her team. Your patience. Your kindness. Your firmness. And yes, your snuggles. Boo (and we) love you “Emmy”.  We will never forget what you have done for us. 

We consider Boo lucky to be part of a team of teachers and therapists who work together to make her the best. I know your co-therapists will miss you as much as I will. Workshops won’t be the same. Heck, Fridays won’t be the same. 

You have helped us navigate feeding issues, potty training, stairs and Boo finding her voice. She has flourished under your care. I have seen you correct her with love. I have seen you stop when she wants just one more hug. You held me up after that field trip of tears. I have witnessed your patience (more than I could ever hope to have). I have been lucky to have you collaborate with others who work with Boo. You have allayed my fears and offered guidance. You do every task with attention and caring. 

Thank you from the bottom of our souls for giving Boo your best. 


Actions matter

It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:

“Why is that person black”

“Why are those two girls kissing” 

“Where are his legs”

“What is that thing in that boy’s throat”

As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.

You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.


A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.

But why should she be embarrassed by her child? 

Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare? 

I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.

I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.

Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.

In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.

There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?

Here is the answer: YES! A resounding YES!

Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).

Kids just want to ask the questions. It’s the parents who want the details. That is okay too. 

Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello? You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.

Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents.  She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning. 


You should get to know her and others like her if given the chance.  It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

Why I’m not mad at Toni Braxton

Toni Braxton is facing a lot of criticism over her memoir, Unbreak My Heart. According to E-online, Ms. Braxton writes that she believed her son’s autism was “God’s payback” for having an abortion.  While many are understandably upset about Ms. Braxton’s provoking statement, I think what is being missed in the outcry is she states in her book she BELIEVED. With a “D“. 

What parent of a child with special needs has not had that thought? That our child’s disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.
When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.

If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God.  It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.
Photo Credit: Finding Ninee


He is blamed for war, for famine, why not question him for your child’s disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?


In Ms. Braxton’s memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.
Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don’t have an abortion your next child will be punished. Let’s face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn’t a punishment. That life with a child with special needs is a life-altering journey. 

But it’s not my memoir. 

Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing “wrong” with them. We lobby for inclusion. We shout from the rooftops our advocacy. 

We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.

But at one moment in time, each and every one of us wondered why “it” happened. Then our hearts grew ten times too large and we stopped wondering and began living. 

At least I’m honest enough to admit it.



Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.