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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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Lullaby And Goodnight…

March 15, 2008

HH

Image Courtesy Istock Photo

Nine-thirty. I trudged up the rain-soaked walk in the dark at the end of a 56-hour work week. The house was quiet as I slipped off my shoes near the coat rack, wiping away tears as I padded up the stairs and down the hall. I paused at the door and brushed off fresh tears before quietly slipping into our room, and there she was. Sleeping for the moment. Curled up in a tight ball under the quilt her grandmother had made for her and clutching her ever-present buddy, a stuffed lavender puppy named Cosmo.

Ken had set up her travel bed in our room so we would be able to get to her quickly during the long night to come. I set down my bag, pulled off my coat and knelt down next to her, bending to kiss her damp little forehead. Her long curls were slick with sweat and a third set of tears stung my eyelids as I kissed her cracked and bleeding little lips that no amount of salve had been able to obviate. I stifled a sob as I caught the scent of stale formula that had most likely been spilled on her purple PJ’s sometime earlier in the evening, and wished for the millionth time that things could be different. That it could be me lying there suffering instead of her. That I could do something, anything to stop this horrible thing called CVS while knowing with a cold sickening ache that I was completely, utterly, wretchedly powerless.

Frustrated tears strangled and clawed down my throat as she suddenly convulsed in a violent wave of retching and gagging. I fumbled for her decompression tube and clicked it into her G-tube valve as wave after retching wave propelled her exhausted little mop of curls off of her damp little pillow and her tensely curled little toes skyward. I looped an arm under her neck to do my best to support her and forced myself to speak in quiet, soothing tones to her, saying I know not what as the waves went on and on and on, until I began to fear she might snap in half in my arms. I let the tears fall as she suddenly fell limp and lifeless as a rag-doll, her vacant eyes staring through me, seeing nothing.

“Poor little ladybug.” I whispered as I gently brushed her eyelids closed. I was easing her back onto her pillow when I heard a faint, cracking whisper…

“Mommy? Are you ever so sorry I’m so very sick?”

I felt a tiny surge of joy jolt through me that she was alert enough to even talk. “Yes, Sweetie. Ever so sorry!”

“Were you so very worried ’bout me and missin’ me tuh-day wen you had to be wurkin?”

“Oh, very worried… and I missed you to the moon and back!”

And she slipped away again as her brow furrowed in pain. I was about to creep back down the hall when I heard another hoarse little whisper…

“Sing, Mommy… please?” And a trembling little hand stretched in my direction.

“Anything Sweetie. What would you like me to sing?”

Her eyes stayed closed as she moved her cracked little lips and whispered… “Moon, Moon, Moon…”

“You got it. What kind of pie tonight?”

“Bwoo-berry.”

“Oh, blueberry is a great choice!”

I caught the faintest glimpse of a smile as she nodded…

“Moon, moon, moon…

Shining bright.

Moon, moon, moon…

My night light.

Moon, moon, moon…

I can see…

Moon, moon, moon…

God’s taking care of me.

Look up it’s the moon…

Look up it’s the moon…

Look up it’s the moon up in the sky.

It’s big and round…

And I have found…

that it looks,

Just like a blueberry pie.”

“Sing da Clock Song, Mommy…”

“Won’t you play the music,

So the cradle can rock,

To a lullaby in rag-time?

Sleepy hands are creepin’,

To the end of the clock.

Play a lullaby in rag-time.

You can tell the Sandman

Is on his way,

By the way,

That they play.

As clear, as a trill, of a thrush,

In the twilight, hush…

So you can hear the

Rhythm of the ripples,

On the side of the boat,

As you sail away to dreamland.

Up above the moon

You’ll hear a silvery note,

As the Sandman takes your hand.

So rock-a-bye my baby,

Don’t you cry my baby,

Sleepy time is nigh…

Won’t you rock,

Me…

To a ragtime lullaby?”

And I leaned down to catch the faintest of whispers… “You sing-ded me dat song in da hoz-pittal wen I was a baby, member?”

“Yes, I remember. Many, many times.”

“One more song, Mommy?”

“Sure, sweetie.”

Jesus Loves Me?

And for the faintest moment, I longed to beg her to let me sing anything else. Because right in that moment, I wasn’t feeling particularly loved or that Jacqui was either. But her clammy little fingers squeezed mine… “Please, Mommy?”

“Jesus loves me, this I know.

For the Bible tells me so.

Little ones to Him belong.

They are weak, but He is strong.

Yes, Jesus loves me.

Yes, Jesus loves me.

Yes, Jesus loves me.

The Bible tells me so.”


And she smiled. Opened her eyes, looked right at me and smiled. Then she faded away, back into that place she disappears to during CVS episodes as she whispered… “Jesus will keep me company while I’m sick, Mommy. I’ll be all bedder soon… so don’t cry…”

And suddenly, for the first time, I really understood what it means to have the faith of a child… and I feel so very humbled, so very privileged to know such an extraordinary little soul as Jacqui.

“Assuredly, I say to you, whoever does not receive the kingdom of God as a little child will by no means enter it.”

Luke 18:17 ~New King James Version


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Thought For The Day… Does God Have a Cat?

September 15, 2007

KI

Jacqui: “Mom, does God hab a cat?

Me: “I have absolutely no idea. Where do you come up with this stuff?”

Jacqui: “From my head… It’s ‘dis big!” (Holding her arms spread out wide.) “Dat’s how all clebber I am.”

Me: “Hmmm… that’s pretty clever, all right. So what do you think? Do you think God has a cat?

Jacqui: “‘Course He does, silly! (While flashing me a wise little knowing smile) “God woodn’ta made kitties if he didn’t want to ‘hab one for hisself too!”

So now you know.


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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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Jacqui-isms

July 16, 2007

*No eating marshmallows with your toes. It’s not a very good idea.

*Watch out for bumbly bees. Dey’ll stink ya - Peeeeewwww!!

*You havta wash your hands after you go potty. It’s da Ten Ammandments!

*Kermit crabs have very ‘crusty-shins’!

*(After reminding her to ask to be excused from the table…) Okay (sigh…). May I be a goose please? Honk, Honk!

*(When I was pregnant…) Mommy have a baby inner tummy. Mommy eat a baby.

*(To another pregnant lady…) You eat a baby too?

*What’s at da China Forest? (referring to a local amusement park called The Enchanted Forest) I dunno… China people, maybe?

*(In response to a baby crying at the doctor’s office…) Sumbuddy give dat baby a sammich!

*(At a rest stop…) Look Mommy! I making snow angels on da floor!

*(At rest stop number two…) Look Mommy! Magic Toelets!! Dey already have potty in ‘em! (I replied that they were not most emphatically NOT magic toilets. She in turn asked, “Who do dat den?” I responded, “Moral degenerates, sweetie.” )

*(At rest stop number three…) Wow! Mommy - Look! More gen rats do dat too?

*(To one of her physicians…) You’re funny, doctor. Not funny ‘ha, ha’. Funny weird.

*(To another one of her physician’s who asked her if they weren’t friends…) You need to go be someone else’s friend right now. Mommy, he’s a nice doctor, but he’s a very ouchy kind of friend, isn’t he?

*(To another physician who told her to ‘wait right there’…) No. I havta be someplace else right now! (When asked where?…) I dunno. Anyplace else!

* It’s not very easy to eat peanut butter with a straw!

* No eat boogers Mommy, dey taste yucky. (I replied, “EEEWwww! Don’t even say that.” To which she responded, “Ok. I sing it den. Booooogers taste yuuuky!!…. Booogers taste yuuuky!!….)

*Awwwwww! My balloon needs a rest. It’s to tired ta fly!

*(After explaining where baby cows get their milk from…) Why don’t dey just get it outta da frigidator?


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…And Please Help Mommy Not to Be So Grouchy!

July 9, 2007

This morning at breakfast, Jacqui was doing everything within her power to drive me crazy: Pouring salt out on the table runner, finger painting with her yogurt (she can have soy), and keeping up a constant barrage of, “May I? Please? Puh-leeeese? Why, why, why, why, why, why??”

“Please Jacqui, stop it.”

“But Mooommmm!!”

“Just stop. Eat your yogurt.”

“Don’t want to. I wanna eat ice cubes for bekfast.”

“Breakfast is not a democracy. Eat your yogurt.”

“Dis bekfast is too crazy! I wanna eat ice cubes ’stead.”

“No more talking.”

“But why? Why, why, why, why, why??”

“Jacqueline Michelle - enough.”

I didn’t yell, but there was an edge to my voice. Jacqui’s eyes got really big and she clapped her hand over her mouth with a gasp. She narrowed her eyes and said, “Hmmmpphh!” as she jumped up from the table and darted down the hall to her room. I sat at the table, rubbing my temples for a minute then decided I better go deal with the attitude. I had just stood up when Jacqui came running back down the hall with a satisfied look on her face.

“What were you doing?” I asked, suspiciously.

“Talking to God.”

“That’s good. What did you talk about?”

“I asked Him to help not be so grouchy.”

“That’s a very good idea. Did it help?”

“Well… I don’t know yet. I prayed like dis: ‘Dear God, please help Mommy not to be so grouchy ennymore… Ayyyyyyy-mennnnnnn!!’ “

Dear God, please help me know what to do with this kid today… Ayyyyyy-mennnnnn!!


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