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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 2-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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What’s In A Name?

November 28, 2007

JM

Jacqui has lately been obsessed with introductions. Probably as a result of a misunderstanding we had about Emily Post during one of my attempts to instill good manners a while back. You may click here to read the details about how that happened, but basically Jacqui came to the misguided conclusion that I have a fastidious imaginary friend named Emily who is rather particular and easily offended over the issue of manners. Jacqui does her best to humor Miss Emily… I believe she does so primarily because she thinks that I am on the brink of a serious psychotic break. (Some days, this isn’t far from the truth.)

Anyway, her latest idée fixe has been to ensure that everyone has been properly introduced. Everyone. All the time. Everywhere. Perfect strangers? Doesn’t matter. If they are within 100 meters of each other, Jacqui considers it her civic duty to see to it that everyone has greeted each other with all the propriety, pomp and circumstance of a High Tea at Buckingham Palace. However… (You knew there had to be a ‘however’ didn’t you?) Jacqui being Jacqui, introductions never fail to be… unique. Our latest introduction went something like this…

Jacqui (addressing Random Adult): ‘Scuze me… ‘Scuse me… ‘SCUUUUUZE MEEE!!! Hellll-ohhhh dare! My name is Jacqui. I’m not a mermaid or a princess tuh-day. I’m jess’ Jacqui (curtsying). Wot’s yorrrrrrrrrre name?

Random Adult (Looking a little stunned and perplexed, eyes darting around for any possible hope of escape): Ummmmm… Katie. My name is Katie.

Jacqui: Ohhhhhh. Dat’s a very bee-yoody-ful name! Dis’ is Mommy. Her nuvver name is Mee-shell. Dis’ is my bruvver. His name is Kyle. He’s too little to have a nuvver name. My Daddy’s at work. His nuvver name is Ken, but sometimes his nuvver name is Chowder-head.

Me: (Red-faced coughing fit)

Random Adult (suddenly looking much more comfortable and perhaps even perversely amused): Oh, really? How very interesting! How did he get that name?

Jacqui: He was just borned wif it I guess.

Random Adult (laughing): His Mommy named him Chowder-head?

Jacqui: Ummm… I’m not quite shurrrr… I fink dat his Mommy named him Ken and dat my Mommy named him Chowder-head.

Random Adult: (Giggling uncontrollably) Oh… I see… Does she call him that all the time?

Jacqui: No. Mostly not very so offen. Jess sometimes wen he’s doin’ some-fin silly.

Me: (Eyes darting around looking for any possible hope of escape…)

Random Adult: And does your Mommy have another name too?

Jacqui: Hmmmmmmmmmm… Yes! Maybe Dingle-Berry I fink!

…I don’t think we are quite ready for High Tea… At least not just yet. And possibly never in polite society.


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Thanksgiving… Then and Now

November 26, 2007

This year, our family has a lot to be thankful for. For the first time in three years, we were able to spend Thanksgiving at home with family - instead of in NYC for one of Jacqui’s surgeries. While we are extremely grateful for Jacqui’s amazing surgeon in New York, we are even more grateful to not be in the Big Apple this year. So… in remembrance of just how far we have come in three years…

Thanksgiving 2005

NY1

Roosevelt St. Luke’s Hospital in Manhattan, where Jacqui had surgery to remove her Lymphatic Malformation

SU

Jacqui after her 8 hour surgery

SU2

SU4

Thanksgiving Day 2005 in the Hospital

SU6

Jacqui giving her buddy, Cosmo, a check-up

Thanksgiving 2006

SL

Jacqui looking out our apartment window at the Manhattan skyline

SI1

All four of us ended up in Roosevelt St. Luke’s ER with a horrible stomach flu, and Jacqui’s surgery was postponed while we recovered.

SI2

It’s no fun to be this sick in an apartment far away from home with two small children and a husband just as sick as you are.

SU5

Jacqui talking with her surgeon, Dr. Milton Waner, on the morning of her surgery.

SU7

A heart full of worries as we wait to take Jacqui back to the OR suite.

SU8

Jacqui in the recovery room after her surgery

TGN

Thanksgiving dinner in the diner below our apartment… while Kyle threw everything he could reach onto the floor. Fun times.

MCY1

Watching the Macy’s Thanksgiving Day Parade in the Rain

MCY2

It’s much more fun to watch it on TV from the comfort of your living room.

FAO

We went to FAO Schwartz to play on the giant piano and try to forget that we were missing our family’s Thanksgiving back home.

Thanksgiving 2007

TG1

We were with Ken’s family for Thanksgiving this year… Jacqui was so excited to see Grandma and Grandpa!

TG8

Coloring before Dinner

TG2

Ken enjoying a pre-dinner chat with his Dad

TG3

Family visiting around the table long after dinner is finished.

TG9

Kyle getting some last minutes of fun crammed in
before bedtime… playing with toys that Ken played with as a child.

TG6

Jacqui - Laughing and just enjoying being a kid.

We’ve come a long way in three years and NYC cannot begin to compete with the joy of a Thanksgiving spent at home with our family. Thank you Dr. Waner ~ For a Thanksgiving that was so worth the wait!


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Shhhh… Wanna Know A Secret?

November 24, 2007
Christmas is coming early around here!
Big changes are coming to In The Life of A Child very soon… Stay tuned!
: )


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Wordless Wednesday - Thankful…

November 21, 2007









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Pumpkin Patch Pastorale

November 19, 2007

PU1

PU2

PU3

PU4

Ken and I stood, each with an arm around the other’s waist, watching our two children run tumbling, tripping, giggling through the enormous field of tangled vines and cumbrous golden gourds. Days like this. They had been a long time coming for our family. Kyle happily slapped the dusty rind of one of the titian giants lying near our feet while Jacqui raced through the field, plucking pink flowers during her gleeful search for the perfect pumpkin. But Ken and I just stood there. Watching. Living. Soaking the moment into our souls, knowing the priceless nature of it. I looked up at Ken with a watery smile and he kissed the top of my head and hugged me tighter.

It wasn’t so very long ago that things were much different. Days when we saw nothing but the inside four small walls of a hospital room. A tiny baby girl on a ventilator. Through her hospital window, I had seen the green leaves of summer turn color and begin twirling their way to the ground, one by one - and I feared in my heart she would join them. It was October. Jacqui’s first October and oh, how I prayed not her last! Ken and I would stand, an arm around each other’s waist as we watched her fight for her life in her tiny stainless steel crib. Unable to hold her. Helpless to do anything but watch. Watch and pray. “Tell me it will be different someday,” I would beg him through tears. “Tell me you believe we will get through this. I can’t make myself believe it on my own.”

He would kiss me on the top of the head, hug me tighter, and whisper in my ear, “It will be different some day. We will get through this. All three of us.”

And now there are four. Four of us in our precious little family. All outside on a beautiful day in October doing things that I once feared would never be more than elusive dreams slipping through our fingertips. And today there is laughter - lots of laughter. Laughter all the sweeter because it was purchased with tears. As we stood watching, Ken leaned down and whispered in my ear, “We made it.”

I hugged him tighter and brushed away hot, joyful tears, my heart clicking snapshots of every precious frame of the only two pumpkins in the patch that mattered to me. We did make it. And I am so very, very, very thankful that we made it together.

Written as part of Scribbit’s November Write-Away Contest

“My life is different because of…”

The Write-Away Contest hosted by Scribbit


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