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This blog is really about our kids, Jacqui and Kyle:

Jacqui is a wonderfully energetic and opinionated five-year-old. She was born with a rare birth defect known as a lymphatic malformation (LM) and has been through a lot in her young life. She had a trach until she was a year old, had surgery in New York to remove her LM with world renowned surgeon, Dr. Milton Waner (at age three), and still has a G-tube. She is a bright sunny soul in spite of everything.

Kyle is a thoughtful, and slightly reserved 1-year-old with a magical giggle and a wise-looking smile. He is clever and charming and a bundle of pure joy.

Our goal as parents: To treasure every moment and to raise our children to be extraordinary individuals.

Welcome to an inside view of our world!



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Jacqui’s Butterfly Ballet - The Video

December 10, 2007

Well, here’s a little clip of Jacqui’s ballet for you all. Jacqui is the one in red on the far left of the stage. It was her very first performance and I really wish I could have taped the second or third one. She was a bit upset during this performance because one of the assistants told her just as she headed out on stage to remember to “stay in line” when she was dancing.

Jacqui just gravitates to center stage like a little spinning top and whirls there like she’s the only one in the ballet with a huge grin on her face. The slight reprimand just as she was walking on stage really rattled her nerves and I wished more than anything that I could have rushed over and reassured her with a hug after the look she shot over her shoulder at me as she headed out on stage. From behind the curtain, I could see her look of concentration as she looked at the floor, trying to stay in line. She was like a little deflated balloon… all the joy just gone! You can see her sad little limp off stage at the end… she usually skips off, and giggles full of smiles. In the middle of the clip, the little “Ooooo!! Oooooo!!” that you hear with the audience giggling? That’s Jacqui… Worried about getting back to her place in line after dancing in the butterfly circle.

When she got back stage, she was just about in tears. “I ‘membered evvyfing, Mommy… ‘cept I forgotted to smile! I forgotted to have fun!”

I gave her a big hug and told her how great she did and let her know that in the next performance she could try again and not to worry about lines - That she should just go out there and have fun dancing. She grinned and took the advice to heart, pulling off two more priceless performances full of joy and exuberance plus a final bow scene on Sunday evening that I’ll cherish for years to come with all that is precious from her childhood.

Even though she’s a slightly dejected butterfly in this clip, she’s still adorable! Scroll up to the next post for some great photos of her weekend as a prima ballerina!


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Oh No!! It’s Da Cops! Step On It Mom!!!

November 9, 2007

BY1

The Backyardigans are big at our house. It’s actually a pretty cute show, but Ken and I often joke about the insidious ability of the show’s songs to invade all available brain space of non-toddling individuals and render them senseless through sleep deprivation. The second - and I do mean the second your head hits the pillow, out come the goofy little tunes to rattle relentlessly through your cranium.

The show also inspires a unique variety of imaginative play among the toddler set. Well, at least at our house it does. One of the more recent episodes was called ‘Cops and Robots’. This action-packed tale contained an annoying little ditty which tormented all resident adults’ hours of conscious thought without mercy. The entire set of lyrics consisted solely of the repetitive phrase, “Can’t stop… Can’t stop the cops… We’re the best in the gal-ax-sy…” And was sung to the tune of ‘Shoo Fly’. They (the dastardly producers) set the songs to familiar tunes - just in case you are in danger of forgetting the lyrics. But I digress. The end result of this particular episode was to inspire all resident 5-year-olds to speak in robotic monotone for two weeks…

“I-do-not-wan-na-eat-buh-sket-ee-for-din-err… I-wan-na-eat-peez-uh-in-stead.”

“I-need-ta-wear-my-air-ee-ul-swim-gogg-ulls-to-da-go-fur-ee-store… Cuz-I’m-a-row-bot…
Row-bots-all-ays-wear-air-ee-ul-swim-gogg-ulls… It’s-da-row-bot-rules.”

Lots of fun, this particular episode. We’ve gotten a lot of milage out of it. Public conversations were especially entertaining…

“No-laff-ing-at-me. I’m-a-row-bot. You-muss-nev-ver-laff-at-row-bots. It-makes-em-mad.
Den-dey-splode.”

“Doughs-are-not-swim-gogg-ulls. Dey-are-my-row-bot-gogg-ulls. Dat-makes-me-mad…
Mal-fun-shunnn… Mal-fun-shunn… Please-push-my-stop-dat-mal-fun-shun-but-un.”

The novelty eventually wore off and we went on to the next episode, and the one after that. However, you never know when one of those reruns is going to pop up and getcha. Yesterday I was ambushed by a rerun.

BY2

We were driving home from Jacqui’s morning play group when suddenly, an ambulance, with siren blaring, came roaring up from behind. I started making my way over to the shoulder and just about jumped our car onto the sidewalk when a shrieking voice came from the backseat… “Oh no!! It’s da cops! Step on it Mom!!”

Huh?

“Hurrrrrry!! No-no-no!! Don’t slow down! Dey’ll frow us in jam!”

“Jacqueline! You scared me silly! No more yelling.” The ambulance was getting closer.

“Mooooommmmm!! You gotta get us outta here! Dey’ll frow us in jam!”

BY3

“Jam!! Dey’ll frow us in jam, Mom! You bedder move it!”

“What in the world do you mean, ‘They’ll throw us in jam?’ What’s jam?”

“Poh-leese jam Mom!”

“What’s police jam?”

“It’s da jam dat poh-leese peeples frow da bad guys in!”

“I’m not a bad guy.”

And then came the rapid-fire confession… “I stuck-ded some of da berries outta my yogurt on da under-neef side of da table tuh-day! I’m a bad guy! Dey’ll frow me in jam!”

I looked up into the rear-view mirror at her horrified little eyes and tried not to laugh. A hand was clasped in theatric distress to each side of her face as the ambulance closed in… and then whizzed past. The relief that washed over her baby features was palpable. And comical. She looked as if she might just about pass out. I couldn’t help it… I laughed.

“Not funny!!” The little con-artist suddenly regained her composure.

I pulled back out onto the street and headed the car towards home. Looking up at her once more in the rear-view mirror, I somehow couldn’t resist asking, “So… Could you tell me about this police jam?”

“I reely jess don’t wanna talk about it right now.”

“Why not?”

“Too scary.”

“When you say jam, do you mean jail?”

“Noooooooo!! Jam!! I…SAID… JAM!!”

“I think you’re making stuff up.”

“Nooooo! Dere’s a jam dat poh-leese hab! Dey put da bad guys innit!”

“What exactly do you mean when you say jam?”

“I mean JAM! Zack-ly JAM!!”

“Like jam we put on your toast?”

“YES!! But diffuhrent! You know, da poh-leese jam kind!”

“What does it look like?”

“Kinda like grape, I fink, but lots stickier. Da bad guys can’t get outta it for never and never!”

“Where did you hear about police jam?”

“From Off-sir Tyrone an’ Off-sir Neequa on da Backyardigans Mom! I keep telling you dat you really needta pay duh-tenshun!”

I couldn’t for the life of me remember anything about ‘police jam’ on the episode. I made a mental note to tune in and ‘pay duh-tenshun’ on the next re-run.

There was however, another matter that warranted some immediate ‘duh-tenshun’…The issue of the heretofore unknown breakfast crimes. “So, Jacqui… Why do you suppose the police didn’t throw you in ‘police jam’ just now?”

“Ummm… Jess lucky I guess.”

“Nope.”

“Not lucky?”

“Nope. They didn’t put you in police jam because they know that little girls that smear yogurt berries under the table top have to go somewhere else.”

Both hands flew up to clasp whitened cheeks as eyes widened in anticipatory horror… “Someplace else??????!!!???”

“Yup.”

BY4

I pulled into our driveway, got out, slid open her door and gave her a maniacal grin…

“Welcome to ‘Mommy Jam’.”

“NOOOOOOOOOOOO!!!! I don’t wanna go ta Mommy JAM!!!!”

Jacqui sniffled her way through the front door as I cheerfuly sang, “Can’t stop… Can’t stop the Mom… Can’t stop… Can’t stop the Mom… Can’t stop… Can’t stop the Mom… She’s the best in the gal-ax-sy…”


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Ballet of the Redeemed

September 11, 2007

DG


From the time she first cracked open an Angelina Ballerina book and discovered the purpose of a tutu, Jacqui has wanted ballet lessons. For nearly three years now (and she’s only four), we have been her captive audience for her impromptu ballet recitals; sometimes after breakfast, often before bedtime (an effective stalling technique) and occasionally even in the middle of the night. Yep. Three am. Full ballet regalia, full throttle stereo… “Ladies an’ gebblemens… Please kinely take your seats for ‘da ‘mazing Jacqui ballerina show!…” No. I am not kidding.

She has begged, whined, pleaded and cajoled in an attempt to convince me to start ballet lessons for her, and I would have… had I believed for a minute that she was capable of sitting still for the instruction. I told her, ” Let’s start small… how about gymnastics? As soon as you can follow directions in a gymnastics class, we can talk again about ballet.” She scowled and crossed her arms. The portrait of a prima ballerina if I’ve ever seen one.

She finally acquiesced. Mainly because she didn’t have a choice. I had seen what had happened when we attempted to attend pre-school story time at the library. I don’t know how often kids get kicked out of that sort of gathering, but the impression we made on the librarian was lasting for all the wrong reasons. I wasn’t anxious to replicate the event among the impeccably choreographed line-up of perfectly coiffed, pink-tutu’d perfection undoubtedly awaiting us at a ballet lesson.

So yesterday, it was off to gymnastics again. The start of her fifth month. We all piled into the mini-van and headed off down the road, singing along with the radio. Our radio can be tuned to any number of things, from classical, to jazz, to contemporary Christian, or the occasional talk radio or news station (if Ken was the most recent driver). This morning it was tuned to Air One. Jacqui often pipes up with a question or two about a song that is playing and yesterday was no exception.

A song by Nicole C. Mullen called Talk About It, was playing on the radio and the lyrics filled the air:

But every knee shall bow
Every tongue confess
That Jesus our Lord is
marvelous

So let the redeemed of the Lord say so
Talk about it, say so, talk about it
Let the redeemed of the Lord say so
Talk about it…

The song went on and Jacqui decided to become conversational. “Mom, what’s reely deemed mean?”

“What?”

“Really deemed. What’s it mean?”

“What in the world are you talking about?”

“Like in ‘da song ‘da lady’s singin’. What’s reely deemed mean?”

“Ohhhh… redeemed. Remember when you asked Jesus into your heart?”

“Yep.”

“Well, when you did that, Jesus redeemed you, so you can be with him in heaven someday.”

“Oh.”

It was quiet for a minute as the song went on and then Jacqui piped up with the following:

“Mom. I guess we better go to ballet lessons den.”

“What?”

“I needta have ballet lessons.”

“Yeah. I’ve already talked to you about that. We’re going to gymnastics right now.”

“But Moooom!! You don’t unnerstan’! I neeta go to ballet lessons right now!”

“What? Why right now?”

“Cause I’m really deemed.”

“What??”

“Just like in ‘da song.”

“Yeah, I know, but what does that have to do with ballet lessons?”

“Mommmmm! Da lady dat’s singin’ says, ‘Let da really deemed of da Lord say, ‘Go… do da ballet’ say, ‘Go… do da ballet!’”

Umm… I think she actually said, ‘Let the redeemed of the Lord say so, talk about it, say so, talk about it.”

“Noooooooo! I hab ears on my head, Mom! Dat’s not what she said! ‘Da reely deemed of ‘da Lord must do da ballet! I needta have ballet lessons, Mom!”

Honestly. Who can argue with theology like that? Looks like I’ve got some tutu shopping in my future.


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The Button Boy

August 21, 2007

PH

Kyle is our little ‘Button Boy’. If there is a button to be pushed, whether physical or metaphorical, sooner or later he is going to push it. Remote controls, re-dial buttons on the phone, the start button on the dishwasher that was almost through the dry cycle, the re-boot button on the computer… Doesn’t matter. All are doomed to be poked by the teeny-tiny and perpetually sticky index finger of our 16-month-old. As a result, we have showered him with a myriad of the world’s most annoying toys in a futile attempt at keeping his inquisitive little mitts occupied. This has led to an alarming escalation in our non-prescription pharmaceutical purchases of the headache-relief variety. For those of you who have ever wondered what life with the two-and-under set is like, read on…

Note:

If you wish to fully comprehend the experience, keep this in mind when reading the words that follow: The voice ringing through your head should be like that of a bi-polar cheerleader in an acute phase of mania… And the ‘beep-boop-beep-beep’ sections should sound like the most horrific, tonally challenged attempt at music ever made…

Beep-boop-be-ba-boop-Let’s-Let’s-Let’s-Let’s-four-four-four-four-four-four-four -Let’s-Let’s-bye bye-Let’s-Let’s call-Let’s-boop-ba-beep-Let’s-Let’s-circle-circle -square-square-square-square-Let’s-seven-two-seven-seven-seven-seven-seven- seven-seven-seven-Let’s-Let’s call-Let’s-Let’s-Let’s-Let’s-Let’s-call-beep-boop -bye-bye-beep-boop-boop-boop-triangle-triangle-triangle-nine-boop-ba-beep
-Let’s-Let’s-Let’s-Let’s call-Let’s-Let’s call-Let’s call kitty-three-three-beep-beep -boo-ba-beep-four-four-four-four-circle-four-four-four-four-four-four-four
-four-four-four-four-four-four-square-Let’s-Let’s-Let’s-Let’s-beep-beep-boop -bop-circle-circle-cirlce-Let’s-Let’s-Let’s-Let’s call-Let’s call-Let’s-Let’s-Let’s -Let’s call bear-Let’s-Let’s-Let’s-Let’s-Let’s call-nine-nine-nine-nine-nine-beep- beep-boop-bop-Let’s-Let’s-Let’s call-five-five-circle-beep-boop-beep-Let’s call…

Re-read until all rational thought is driven from your skull and you twitch with every syllable. Welcome to my world!


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Life’s a Gregorian Opera

July 12, 2007

GO

Lately, Jacqui’s chosen form of communication has been through singing. Everything. All day. That would be odd enough in and of itself, however, for reasons that I fail to understand, everything is sung to to tune of something sounding for all the world like an ancient Gregorian chant:

“Mahhh-ha-ha-ha-mie, I cleee-hee-heend my roooooom…”

“Ky-hi-hi-hi-elle, don’t tuh-uh-uhhhch my stuff…”

“Da caaa-ha-ha-ha-haaaaat is stuu-huh-huh-huhh-uck in da claw-haw-haw-hawset…”

Every ‘verse’ compells me against my will to answer, “Ahhhhh-ha-ha-ha-mennnnn…”

I’ve tried interesting her in alternate music genres, but no, the Gregorian chant suits her just fine, thank you.

Did I miss something somewhere? Is there a Gregorian Backyardigans episode somewhere that I’m not aware of? Have the Wiggles gone completely off the deep end when I wasn’t looking?

Oh well, I suppose I should go get “Diiii-iiii-iiii-iiin-nerrrr rehh-heh-heh-heh-deeeee.” I can hardly wait for “behh-heh-heh-hed timmmmmme.”


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