Monthly Archives: May 2014

Why I’m not mad at Toni Braxton

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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.


Throw Back Thursday-Turning Right

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

Throw back Thursday-Blog style



(Originally posted 15-JUL-2012)

Although Boo is not autistic, she exhibits a lot of similar behavior. This weekend I read an article in Outside magazine titled “Little Boy Lost” by Dan King (http://www.outsideonline.com/outdoor-adventure/outdoor-skills/survival/Catch-Me-If-You-Can-20120801.html?page=all) . It is about an 8YO autistic boy that was lost for five days in the forest. In the article they state that it is estimated that “40 percent of children with autism will go missing at some point in their lives” (page 75 section 4 of the article). 

It happened to Boo this week.  She not only escaped from her classroom, she wandered quite far from the class into the hallways of the school.

For a little back-story, when Boo first started this program I repeatedly warned them that she needed a one-to-one dedicated aide. I also warned them of her tendency to wander. She would not be misbehaving, just something may catch her attention and the next thing you know she is down the street. 


Fast-forward six-months and Boo’s teacher not only requests an assigned aide, an updated IEP and a transition to a dedicated special needs class for half the day. This new program began this summer. Again, we expressed to the teachers & aides of Boo’s tendency to wander. It was agreed that all doors would be shut and that Boo would have a person assigned to her well-being.

Thursday it happened. One teacher thought the other was working with Boo, when they notice the door was opened (handicapped, so much easier to open for Boo!) and no Boo to be found. They were unsure how much time had elapsed, quickly got coverage for the other children in the class and went to on a Boo hunt. 


This is when I know that Boo has a guardian angel looking out for her well-being. As this is the summer, the school is not locked to the public and the front doors were wide open. Had Boo taken a left out of the classroom she would have been a short walk to the great outdoors. Had this been during the traditional school year, there would have been students milling around and she might have been tripped or run down by an energetic child.  


But she took a right turn and ended up in the middle of the school. Quite a distance away from her class, but still a right turn. One that led her into the relative safety of the indoors. Thankfully her teachers found her in short-order, thankfully she is fine and this was a lesson learned for all of us. 


Her daddy, rightfully so, went nuclear when I told him. He didn’t understand why I was calm about the incident.


First, I have been waiting for this to happen for six months and was just thankful that it happened in a somewhat controlled manner. Secondly, we are not saints and it has happened to us! In the front yard, blink for a moment and she is gone. Sure the teachers were warned but until it happened they would not believe us. Lastly, I do not want to ever think the teachers cannot tell us something. I want them to know I not only will I not ‘overreact’ I will work with them to figure out a solution that will work in the school and home too.


I wasn’t going to post about what happened on Thursday. But after reading the Outside magazine article, I felt compelled to share the story. Boo was missing for, at most, 10 minutes and I was completely unaware. Because Boo is virtually non-verbal, had her teachers not told me, I would have never known. Had Boo taken a left-turn and been found by a stranger she would not have been able to give them any information. Even scarier, had she taken a left and gone unnoticed she very easily could have run into the busy street. She is so petite, a driver may not have noticed until too late. The what-if scenarios are endless and nightmarish.

If 40% of autistic children ‘elope’ how can they not figure out why? With all the money in medical research, they can figure out how to keep a man happy but not our children safe. 


Personally, I am going to see if they can get a door alarm for Boo’s class. I am going to look into a medical alert bracelet for her to wear with her name and number (the trick will be making her wear it). I may even go the extreme and start labeling the inside of her clothes! 


I would be very thankful for any other ideas. What do you do to make sure your child is safe if they wander?

40% of autistic children go missing. Thank God Boo took a right-turn. 

My Challenge: Julia

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All of us have challenges. Each and every person has to struggle to do something. This Spring at Abby’s school we charged the staff and students to share their Challenges. From the cute (can’t catch butterflies) to the heartbreaking (my mom died) every child and teacher shared.  With sharing came hope. Sharing led to compassion. Sharing led to being free to say that while the child might have a challenge, the challenge wouldn’t stop their dreams.

After I posted the program my friend Kristi at Finding Ninee encouraged me to make a Challenge Series. In reaching out to a few friends the response was amazing. May I introduce you to my first guest, Julia.


Julia is a wonderful little girl. We first met her and her family at the Pediatric Therapy. She spends hours each day working in school to learn how make her cerebral palsy work for her. This little girl is a fighter. Defying the odds and expectations of anyone foolish enough to try to put limits on her. Julia loves swimming, horseback riding, picking her sister up at the bus stop and bike riding.

Julia is 5 years old and her challenge is Cerebral Palsy. But don’t feel bad for Julia’s challenge, she just needs some extra time and help. Her smile says it all: Her Challenge makes her stronger.

There are over 800,000 persons in the US with Cerebral Palsy. Cerebral Palsy is a group of disorders that can affect movement, learning, hearing and thinking. Like many other syndromes, children and adult with Cerebral Palsy are as unique as their personalities. To learn more about Cerebral Palsy please visit United Cerebral Palsy

Thank you, Julia for sharing your smile with us today.

This is the inaugural post for the My Challenge Series.  To submit your challenge, take a photo holding a sign that says, “MY CHALLENGE IS X” with a short about how you do not let your challenge define you to firebailey@Gmail.com

The Box

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It started innocently enough. We took Boo to see Frozen. Not once, but twice. She fell in love with the music, the movie and Elsa. When it was available on ITUNES we downloaded the soundtrack and the movie.


We now are banned from listening to anything in the car except for the Frozen soundtrack. A what was I thinking moment. At least the music is enjoyable.

At Easter, like most parents I tried in vain to obtain the precious Elsa doll. I tried everywhere without success. This weekend I happened to be in a big-box store to pick up things for Abby’s school project. Like a fool I went to the toy aisle where what before my eyes do appear:


SCORE!!! I immediately place it in the carriage, Boo steals the almost paid for Elsa doll:


//www.youtube.com/get_player


Proud mommy moment. She loves it, she is going to play with it. Right? We get home and she refuses to let me take it out of the box. When I finally convince her that the doll is supposed to come out and be played with she freaks. Refuses to have anything to do with the doll. But the box? 

The box is to be treasured. She takes the box into her room and gives it the spot of honor:


Are you freaking kidding me???? I could have sold the doll on E-bay and paid for my retirement but you want the box? Abby tried for the rest of the afternoon to get Boo to play with the doll.

I was thinking to myself how do I explain to David that I just spent $25 on a box? But I was saved at bedtime, when I was putting Boo to bed and she refused to go without ….


The box? Yes, that is still in her room. But she slept with Elsa, I’m counting that as a win.



My DIY guide

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I am not a do-it-yourself type of gal. I semi-joke that is why I am married: I don’t have to kill bugs and I don’t have to do projects around the house. The bloom fell off that rose very quickly and I now kill bugs. However I have successfully managed to avoid any home projects since the time I picked up a power drill and missed the wall…


One of my few skills, though, is hosting Ladies Night In. A night where there are just three rules:

1. Everyone bring something to drink
2. Everyone bring something to eat
3. Everyone leave their husbands at home (kids, though, are welcome)

As I, ahem, get older I am learning to value my friends more. I need them to be a part of my life more than I need that treasured M&M. With Boo it is impossible for me to be as there for them as they are for me. Ladies Night In solves that. It keeps us close, keeps it low-key (and cost!) and allows me to catch up with those whom I enjoy.

Total Ladies: 23
Total Children: 12
Total Cost: Not important (but for me, less than $15)
First guest arrived: 5:30 pm
Last guest standing: 11:45 pm

The DIY trick is to mix it up. Stop yourself from just inviting a core group of friends. This weekend we mixed it with Boo’s therapy team, friends from high school, friends from the neighborhood, PTA, friends from the therapy waiting room, etc…not everyone knew one another. The stories were, for sure rehashed, but re-enjoyed as we laughed and got to know one another. By the end of the night people who had never met were sharing parent survival tips, workplace stories and sangria. By the way, the sangria was fabulous!

The kids? Heck they had a blast. The only rule for them was no food in the bedrooms and no kids inside the fire pit. Yeah, that sounds like a no-brainer but these are kids I am talking about. You know what? Not one kid fought. I don’t even think one child came and told on another child for a perceived wrong-doing. Every child from 4 to 12 got along and played. The ladies were having so much fun, we kind of (but not really) forgot the kids were there. 

The food was delicious. My kitchen was in shock with all the healthy fruits and veggies that were brought. I am still wondering what the heck hummas is and thanking God that someone brought brownies so I knew it was still my house. 

As they were leaving kids were asking when the next Ladies Night In was and trying to plan one on their own. Even the token boy-child had fun and said his brother missed out on the best night of the year. 

The next morning I met one of my friends from Ladies Night for our first 5k of the season. We both said it was so refreshing to see our neighbors who live next door yet we never seem to have time to do more than wave on the way to work. That we needed this, this time to just laugh and not worry and eat.

So this weekend, treat yourself to a DIY project you can actually enjoy. You do not have to do it as crazy-big as mine got (who knew everyone would RSVP yes and bring friends!). Invite a few ladies over, share some time just rehabbing your kitchen with laughter.



Throw Back Thursday–Comparing

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.


(Originally posted 05-JUL-2012)

I really TRY no t to compare Boo to other children. I just don’t often succeed. Take last yesterday. While other children (including Allie) were enjoying the fire department muster, Boo was to overwhelmed to participate. I tried to take her off to the side to play in the foam, but she could not over come her fears. Too many people, too much foam, too much noise. I don’t know which of these factors were too much for Boo, because she cannot tell me.

It is so difficult not to think, look at those little ones rolling in the field. They are having so much fun. Watching the utter joy on the other children’s faces as they played with the water and foam I had to continually remind myself of Boo’s progress this year. At least this year, she watched from afar. She kept calling for Allie to come out of the fun, certain she was in danger. But she wasn’t crying or clinging to my arms. She just wanted to watch and laugh from a safe distance.

It was the well-meaning family members that bothered me. Trying to force Boo into a situation she wasn’t comfortable. Trying to force her to touch the foam or play in the water. They were trying, I know, to help. 

But they were not helping. 

They just think this is something Boo will outgrow. They do not understand that the hours of therapy a week are necessary. That Boo needs to explore the world at her own pace. You cannot force Boo to do anything. She has to wait and make sure it is safe (thankfully Allie is a willing guinea pig). Boo does not like for you to take her shoes off and make her walk onto the grass. That it took me a week for her to be able to wear the crocs in the first place, so please do not remove them!

They do not truly understand that the doctors, surgeries, procedures, therapies are essential for Boo’s life. And that they are probably unending. A friend actually said to me that Boo was a typical 3YO, why is she in so much therapy. Then I pointed to the actual 3YOs that were playing with the firemen in the muster.  The ones who were playing on the playground unassisted, going to the ice cream truck and eating without a problem. If Boo wasn’t in so much therapy she wouldn’t be rolling over let alone walking.

I understand that all children reach milestones at different times. I just wish well-meaning friends and family would begin to understand that Boo’s milestones may be in the distant future. They should rejoice in where she is, not where she should be.

And so should I.

The joy of language

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Boo gives me a lot of atypical milestones, moments, frustrations and joys. Every once in a while, though Boo gives me that typical parent moment when I realize even special children are typical in ways never imagined.

Boo has worked so very hard to obtain language. She has been in speech therapy since she was in two years old. Her therapists have never given up on her. They have persevered, coming up with new techniques, scaling things back or pushing her forward as warranted. 

Like most parents the first time you hear your child babble on the baby monitor you lay there and smile, rejoice and wonder what the heck they are saying.

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When you go to their room in the morning and they greet you like you just missed the best dream ever your heart warms.
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And if you are a normal parent by 7 pm you just wish they would stop talking. When you tire of trying to decipher what they are trying to tell you. Even as they crack you up.



//www.youtube.com/get_player


I live for these typical moments. The moments that most parents, to some extent, gets to witness. The babble, the random words and the expressions. Things five years ago I never imagined.

Even as my ears ring.

A special thank you to Boo’s numerous therapists for giving me these moments.

And yes, Boo is still wearing her Halloween pajamas. And yes, I know it is May. Don’t judge.  

Children’s Hospital Boston

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Last year our family kicked off the NSTAR Walk For Children’s Hospital in Boston.

We have walked every year since Boo was discharged from the NICU. Last year, over 25 of our closest friends and family joined us.


We walk to thank everyone from the doctor to the nurse to the technician to the janitor how makes every visit as painless and comfortable as possible.We walk for the parents who are scared out of their souls that their child is in pain.  We walk for the children who cannot.

Boo in 2011 Walking across the finish line


I am asking everyone to join me this year in supporting the hospital that saved Boo’s life. Not once, not twice but every time.

If everyone who reads this post donates as little as $10 you will make an impact on a child’s life. Click here to donate

Please consider sharing via Twitter and Facebook.

I thank you. Boo thanks you. Her Brigade will be thinking of all of you when we walk together on June 8th.





I Run 4

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I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.


I began running in earnest about a year ago. I ran to get away from the stress of just, well, everything. Taking 20-odd minutes to focus on nothing but breathing and trying not to trip in public.  It wasn’t always pretty, but I finally found my rhythm. I managed to avoid eating any more bugs and discovered the joy of tripping running in the woods.


Bailey& I running last fall. Or falling last fall.
Recently a friend asked me to join a group that runs for those who cannot. It is called I Run 4. This is a great non-profit that matches one runner for one buddy.The idea was sparked when the founder, Tim Boyle, began dedicating his daily run to a friend who was physically unable to run. They created such a bond a movement was born.

My friend’s daughter is a buddy. Her runner sends not just the child, but the family encouragement and emotional support to get through days that can be overwhelming. In return, my friend’s daughter provides a smile, unconditional love and gratitude that someone out there care enough to run with her spirit.  She also provides the runner with a reason to get out there and run when it would be easier to hit the snooze button.

Thus, a new village was created for my friend.  

https://youtube.googleapis.com/v/zM56CoucRm4&source=uds


Here’s the thing though, not enough special families know about the program. There are over 3,000 runners looking for their buddy! Buddies are those with physical or mental handicaps. Persons of all ages who are willing to be the inspiration for the runners. 

If you are in need of a village, of some support or you are just looking for a way to inspire someone, please consider signing up your child or adult with special needs to be matched. Follow this link: http://www.whoirun4.com/match-me/ to find out more information.  There is no cost to join, for the runner or the buddy.  

The runners are waiting to be a part of your village. Are you ready to be part of theirs?



The nicest thing some one ever did for me was to be my village and allow me to pay it forward.

And that is how I finished the sentence, the nicest thing some one ever did for me was….

Finish the Sentence Friday


**This post was not paid for/sponsored by IRUN4. I will not be moved up quicker on the buddy list (darn) unless more potential buddies decide to join the program. I did receive permission by IRUN4 to use their links and information to promote their program. 

Throw Back Thursday Blog Version

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.


Throw Back Thursday, Blog Style. 

(Originally posted 27-JUN-2012)

Today I heard a talk radio program discussing could you really have it all? They were focusing on if a man or woman who worked outside the home could they really give each portion of their lives (home, work, play) 100%.

Personally, I think this is a ridiculous question. If I am getting 100% fulfillment (or giving 100% dedication) to my job, why would I need any satisfaction from my home/family/marriage? If everyone is trying to get and give 100% from every area of their life is at wonder why we are all so exhausted? They didn’t even touch on the subject of parents with special children.


Take today , for example. School is out, so today meant ‘balancing’ work, kids home from school, Boo’s therapy appointments (only one today thank goodness), and then some one had to cook dinner! Is it any wonder that those of us who have unique children might feel more stress in the balancing act?

I think it may be more important to ask, instead of do you have it all ask do you give it all? Let’s face it, there is no way to have it all. But we can give our all to each endeavor. When I am at work I give 100%, when I am at therapy with Boo I give 100%, when I am home with the girls I give 100%.

This is probably why now that the girls are asleep and the husband is at the station, I will only give the crazy puppy 10% of my attention and the rest I will give to my glass of wine!