Dear Graduates,
I know you are getting a lot of advice as you transition from High School to College or from College to the “real world”. Everyone is telling you to enjoy this, the “best time of your life”. As my brother pointed out to me, this isn’t quite true. You see the best time of your life has already happened. At the same time you are no where near the best time of your life.
The best time of your life was your first step. Your first day of school. Your first crush. Your first kiss. Your first bike ride.
The best time of your life was the moment you received your license. The day you pitched your first no-hitter. The day you scored the winning goal or you starred in the school play. The night of your first sleep over.
The best time of your life was finding your best friend, for real.
The best time of your life was your first dance, your first homecoming, your prom, your graduation day.
The best time of your life will be your first apartment, your first love, your first ‘real’ job. The day you started exploring the world without a chaperone. The day you realized you can still call home.
The best time of your life will be taking trips with friends, experiencing the world at 18, 28, 38 and beyond. You will laugh and cry and say remember when you talk about those trips in the not so distant future.
The best time of your life will be finding your true love, the person who makes you whole. Your new life together, starting your family.
The best time of your life will be when your child comes into your life, when you explore the world through their eyes.
The best time of your life will be after the children are grown and you are still holding hands with your mate.
You will have many best times of your life. Don’t focus on this fleeting moment, don’t squander or yearn for this time in your life. Live each moment as it should be lived.
That moment will become the best time of your life. Enjoy it.
Author Archives: firebailey
My Challenge: Kayla
This is Kayla. While I have never met Kayla in person I have come to admire her through her mom Michelle’s blog, Big Blueberry Eyes. Kayla loves to dance, act and participate in Buddy Walks. Kayla has not yet met a stage that she cannot dazzle.
Kayla has Down Syndrome and with that comes some challenges. Somethings are harder for her to do and some things take longer for her to learn. Yet having Down Syndrome doesn’t define Kayla. She is defined by her beautiful heart, the friendships she has created and the activities that keep her mom on her toes.
Thank you, Kayla for sharing your challenge. I hope one of these days to see you dancing with Boo on the beach!
What’s your challenge is a series that was inspired by a program I created at Abby’s school. To submit your challenge, please e-mail me at firebailey@gmail.com
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“.
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| 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?
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.
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
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.
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| 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.
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
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
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:
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
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
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
Children’s Hospital Boston
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.
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| 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.














