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.

Song

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It is 5-minute Friday…ready for a Song?

Song is that sound in time that takes you back…

Hearing Jimmy Buffett and bringing back to when your now husband convinced you to go on a date by promising to take you to a Buffett concert.

Hearing The Who and and bringing you back to the moment when Boo started dancing in the Jeep and saying “song, song” wanting the Who over and over again.

Hearing “Baby I need your loving” and being transported back to your wedding day.

Hearing “Just a Dream” by Carrie Underwood and remembering how you cried the first time and only time you left Boo in the NICU to go sleep.

Hearing Selena Gomez and remembering the first time Allie realize that the characters in a TV show are also people.

Hearing “Celebration” by Cool and the Gang and remembering being in Spain with Tia when you taught the tour guide the song.

Hearing the theme song to Austin and Allie and seeing in your mind the first time Boo danced.

Song….this has been 5-minutes. What song brings you back to a memory?

Five Minute Friday
 
 
This is Boo, last summer, dancing in the Jeep to “The Who” 
 
 
(FYI she has no shoes on because she tends to throw them OUT of the jeep along the highway!)
 


Boo and Yoga

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We are incredibly lucky to have found Jessica, Boo’s Yogi. I have written before about Yoga for the Special Child. But for a quick update for those new to this blog, we started Yoga with Jessica about a nine months ago. It was truly an act of Fate that we met, her daughter is a ‘peer’ classmate in Boo’s integrated preschool.

Jessica is an absolute treasure. On top of running a husband and a house with five children, she is also a co-founder of Heartbeats for Down Syndrome. In her “spare” time she teaches yoga for children like Boo. She does both private (for children like Boo who would not be able to concentrate) and small-group glasses for young children.

I have seen Jessica teach a group class with a mix of typical and not-so-typical children. But, biased here, I like the solo lessons. Boo cannot follow directions. Most times Jessica has to move Boo into the position. What we have found is if Jessica’s older daughter does the lesson with Boo the results are beyond terrific.

I started Boo in Yoga for the Special Child to help with Boo’s frustration at being non-verbal. That didn’t happen. What did happen is a significant change in Boo’s bowel issues, a language explosion and a willingness to do the Yoga on her own.

Today in hydrotherapy, her PT was concerned about the toe-walking and a tendency for her right leg to turn inward. To demonstrate she asked Boo to stand on one leg. Boo didn’t understand. But when we said, Boo tree pose…viola! Boo stood on one leg in an almost perfect tree pose.

Hey huge milestone there!

It is difficult, between Jessica’s commitments and my own life we tend to interfere with Boo’s Yoga schedule. One of my goals (and Jessica’s) is to make her lessons more routine. I have noticed, when I put the extra time in (between homework, life and everything else) Yoga for the Special Child works.

Honestly, we should probably go 3-4 times a week. But between work, school, therapies and life it just isn’t possible.

But Yoga isn’t for just the “Special Child”. Allie loves Yoga. Because I am not a Yogi nor one who can mediate I am not the best mentor for the girls. But before bedtime when we put Boo through her poses, Allie joins in.

And we all relax, if just for a moment.

To learn more about Jessica’s story please visit Heartbeats For Down Syndrome or the National Down Syndrome Society.


This post was inspired by Rachel Tao of Poop who shared a story of childhood yoga and then recommended I post Boo’s experience. Rachel is one of the calmest bloggers I have “met”. She always sees the message in the little things. Something I need to learn how to do. Thanks, Rachel!

To find a Yoga program for the Special Child look here (I really recommend finding someone on this site and not just anyone.) for Yoga just for the child I found this site but cannot totally endorse it since I found Jessica simply by putting out a cry on Facebook.

Namaste!


Survivor, the Sibling Version

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I am a fan of Survivor. Not a Cochran-type fan, but I love that show. Honestly the first season is still my be-all-end-all favorite. Before people thought they “knew” how to play the game.

Looking through the view of a mom’s eye, Survivor could be the ultimate sibling game. Especially if you rip off the theme: Fans vs. Favorites and switch it to Older vs. Younger Sibling. 

Can these siblings outwit, outlast, outplay to win Sibling Survivor?


A food challenge? Will older sibling get mom’s attention before or after younger sibling.

An immunity challenge? Will older sibling sneak past younger sibling to play with dad.

A food challenge? Which child can force down the dinner that their mom is forcing them to eat.

An immunity challenge? Older sibling attempts to put a puzzle together faster than the younger sibling can take it apart.

A food challenge? Which sibling can get more food on the floor/themselves/not in their mouth!

An immunity challenge? Will older sibling stay awake longer than younger?

A food challenge? Which sibling will be the first to find mom hiding in the laundry room with the brownies.

An immunity challenge? Which sibling will create the best Mother’s Day card.


The winner to be determined by a single vote. Spoiler alert: The who puts mom up in the better nursing home will probably win.






Wow

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Opening Boo’s backpack yesterday and I got the biggest surprise….an invitation to a birthday party.

Wow.

This is a huge milestone for Boo. In some ways I am so excited, a friend wants her at her birthday party. In truth everyone from the class is invited. That doesn’t take away from the invite.

Boo has been included. She is a part of the class and her friends want her there. Now do Boo’s parents?

YIKES the true answer is selfish. I worry that Boo will be overwhelmed (it is a local children’s museum), that she will just sit and watch from my lap. I worry that I will have to be confronted (again) with the visual reminder that my Boo is their age but not their peer.

But this isn’t about me. Boo was invited, she was included. Boo will be going to her first birthday party.

Wow.



Update: Just got home to find that the day of the birthday party is a day when we have a family obligation. Upside Boo was going to go to the party. Downside, she will just have to wait a little longer. Bonus? She was included and that is all that matters.


10 Favorite Characters in Movies or TV

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Today is Monday and I am quite fried from all the Mother’s day activities. I mean really, 8 loads of laundry, do the dishes x 4 and then the freaking Bruins lost!! OH and let’s not forget the card I got…To Our Mother….love Hubs, Allie, Boo and the dog. It was a card for an 80-year old. But at least I got a card, right? Oh and then he worked overtime so it’s all good.

This week’s Listicle? 10 Favorite Characters in Movies or TV..

10. Woody from Toy Story, come on someone who believes so much in a child’s love? That has Mommy all over it.

9. Boston Rob from Survivor. 1st he is from Boston. 2nd everyone tries to emulate his game, and fails.

 
8. Archie Bunker. Wouldn’t you love to be able not put a freaking filter on your lips?

7. Princess Leah: she can shoot a gun, fly the Millenium Falcon, ask a walking carpet to get out of her way and then kiss Han Solo. Enough said.

6. Samantha from 16 candles. Because on my 16th birthday I hosted a party that no one came to, sad but true story.

5. Brad Marchand. The Little Ball of Hate on the Bruins. Only because he reminds me so much of my husband. I just hope he plays better in Game 7.

4. Austin & Allie, due to the joy they bring Boo.

3. Danny Zuko and Sandy from Grease. I remember dancing in the aisle with my mom in the movie theater. I think I was 8. I cannot imagine taking Allie to this movie, and she is 9. Holy crap, Rizzo has a freaking pregnancy scare!

2. Ariel from the Little Mermaid. This is an odd pick, but funny. Allie recently told me my hair looks like testicles, like Ursula’s hair. She meant TENTACLES but still she got me to the hair dresser!

1. Indio Montoya from the Princess Bride. I hope someday Allie or Boo says to someone, my name is “Indio Montoya. You killed my father. Prepare to die”. Or better yet… you said my mom’s hair looks like testicles, prepare to fix it!

This post was brought to you by Monday Listicles. The word you might be using but not know what it means…

 

Who are your favorite TV or Movie Characters?

Comfort

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Today’s 5-minute Friday challenge is “Comfort”. Ready, set, go….

Comfort is having a day that I break, just a bit, and a friend from half-way across the world responds.

Comfort is being so frustrated by the doctors who recommend a therapy for Boo that is not available due to her lack of a diagnosis, and a friend from 8 hours away not only responds immediately to my URGH e-mail but then spends her day finding a way to make it happen.

Comfort is knowing that I am not alone in my struggles.

Comfort is being able to see the light of Boo’s smile as she charms a gangster, who might not have been a ganster.

Comfort is seeing my Boo race to the school bus to see Allie home.

Comfort is my husband knowing I had a bad day, so he disappeared for a while.

Comfort is being afraid and having someone hold my hand.

Comfort is knowing that when it becomes too much to handle, I am allowed to wallow in the land of self-pity if only for a moment.

Comfort is having more awesome days than bad.

Comfort is having my child home with me safe and happy, never knowing that mommy is overwhelmed.

Comfort is having friends get pissed off on my behalf at the unfairness of it all.

Comfort is having those same friends see the beauty that is Boo.

Comfort comes from awareness that all parents feel overwhelmed and want to hide, preferably with alcohol and chocolate.


END.

Today, like most Fridays I really think that Lisa-Jo picks a word that is totally appropriate for my state of mind. I don’t quite know how she does it, but I am happy that her prompts help me work through whatever crap I am going through at the precise moment of time.


Five Minute Friday

Sometimes I break….

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Boo has had a bunch of appointments over the past two weeks. More of the same, she is doing great/keep doing what you are doing. The thing is, and here I am being selfish and a total nitwit, Boo hasn’t ‘evolved’.  What I mean to say is that yes, she has had a language explosion and she is doing great. I am not trying to minimize her gains at all. But when you look at the whole picture she is still in the 18m to 2Y developmentally.
 
Yes she has made gains, but she hasn’t advanced. She seems “stuck” at this stage. I know I need to be patient and keep doing what I am doing. But if her developmental growth is starting to stagnate does that mean anything or is it that the gains are more noticeable at 6m old than they are at 4 & 1/2?
 
If we “judge” (seriously, my word of the freaking week) by the developmental scale for a 1-3YO: she can walk alone, but not run. Boo can kick a ball, but does not have awareness of self. She cannot find a hidden object 2-3 levels deep (what the hell?) but can if it is behind your hand. Does she play make believe? Again, no.
 
Then I (idiot that I am) looked up the 3-5 YO developmental scale. (file under what were you thinking?). Walks up and down stairs alternating feet, no but neither does my dad. Climbs well? Check! Bends over without falling, no but then neither do I. Understands his/hers, no. Matches an object to a picture, sometimes. Can take turns, sometimes (but both Allie & Hubs have trouble with that concept.
And let’s not even put the whole potty training thing into the mix.

Okay, I know I should stop the pity party…but I feel so, I don’t know…if down is the right word. The developmental doctor wanted Boo to start at-home services. At first I was like no way, when do I have time for that? But because she was so insistent that I arrange it, I called the services. Guess what Boo isn’t eligible. Now I was ticked off that here the doctor wants her to have services and she can’t get them. Of course, the fact that I didn’t want them in the first place is totally irrelevant.
Gosh, I feel like a teenager. Not wanting something and then getting ticked that I didn’t get it.
Anyway, I am sitting at home having a pity party for myself and totally mad at myself for having it. I know I should be happy that Boo is safe and healthy and home. She is not on a feeding tube, oxygen or sitting in a chair staring at the wall. Her issues are so minute compared to what other children are triumphing over.
But, seriously, sometimes it just gets tough to be the upbeat supermom.

Karma

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Life is funny. Just yesterday I contributed to Kristi’s Our Land Series and wrote about how some one (in my mind) was judging Boo and therefore my mommy skills. That same day I was driving Boo to an appointment at Children’s and well, you know how Boston traffic can be. If you don’t know picture a 4-lane highway at a dead stop with a blinking sign telling you that it is only going to take you 37 minutes to go 5 miles. And your exit is another 7 miles past that.

As we are sitting in this traffic Boo starts screaming “HI” at the top of her lungs and waving at the car next to us. Here is where karma kicks my ass. He looked like he was in a gang.

So there I am judging, ON THE SAME DAY as I write a post about judging! Now in my limited defense, the car was pounding rap music so loud my feet felt the vibration. He was wearing the Mr. T starter kit of gold chains and earrings and had his head covered in a handkerchief.

After about (what felt like) 5 minutes of Boo calling “HI” this man finally cracked and waved at her. Then he smiled. And he had gold teeth to match his gold chains. The minute he noticed me noticing he quickly started scowling and changed lanes.

Yeah, I judged and still think he probably was in a gang. But it just goes to show you the power of my Boo. Imagine if we used her in crime control?

Kindness

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Sometimes people’s kindness just makes me speechless. The other night, after a very long day for Boo, I had to drop something off to a friend of mine that works at a golf course. As we were catching up, Boo was just resting her head on my shoulder.

A kind man who works in the pro-shop approached her and held out a pink golf ball. Boo actually took the ball from the man, said ‘thank you’ in her quietest voice and rested her head back down.

This is huge for so many reasons. Boo is very shy, that she even met this man’s eyes and took something from him is amazing. But that she also said thank you? Oh my…

We left, she never let go of the ball. The next morning, it was the first thing she grabbed after her IPAD.




She has not let go of it. She has held it in the supermarket, the bank, Church and while playing. I had to wrest it from her hands before bedtime.

So I would like to take a moment, to say thank you. Thank you to this very kind gentleman who took time out of his day to make a little girl’s day and her momma’s heart overflow.