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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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Filed under: Best Shot Monday, Makes My Heart Smile, Munchkin Photos, Outdoor Fun, Sugar n' Spice, seasons by Childlife
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I sunk to one knee as I clicked the shutter, the boreal chill of dry snow seeping through denim. I peered over the top of the camera, smiling at Kyle’s first timorous steps in a world of white.

Just beyond, I could see Jacqui sailing down the sloping bank, kicking up fine crystal plumes in the wake of her new sled. I smiled again as her snow-muted giggles reached my muffed ears and turned back to Kyle.

His back was to me now. He let out an exaggerated laugh, a baby’s whistle in the dark as he took a few brave steps before plunging face first into the powdery snow. He popped up, his tiny face a portrait of alarm with the glacial sensation of ice crystals nipping at chilled nose and cheeks. With a betrayed wail, his baby blues filled with beautiful disillusionment and I couldn’t resist a couple more clicks of shutter before scooping him up for a warm hug, pats on the back and an earful of soothing prattle.

His whimpers quickly quieted and I giggled as curiosity won out over caution. He wriggled free and toddled forward, pausing to explore the cause of the crunch beneath his baby boots with mittened fingers. And there it was. That familiar twinge. Would moments like this always seem bittersweet? He laughed and halted yet again to scrutinize the sound of his own muffled voice in the arctic air. Twin tears traced frozen parallel tracks down my cheeks as watery smile spread below them. And I remembered. Jacqui’s first snow hadn’t been like this.
All those marvelous baby firsts were so different with Jacqui. Her first snow I had bundled her up so carefully. I knew we could only be out for a few minutes, but I longed for her to have moments of normalcy wherever I could snatch them for her. I had turned off her feeding pump and re-programed it at a slightly faster rate to make up for the few precious drops of formula she would miss during our sparse moments spent outdoors. I turned off her heart-rate monitor and pulled open the blue velcro chest strap to free her of the tethering security of the black and white wires. And I immediately heightened my attention to her color and breathing rate.

I unhooked the humidifier’s corrugated blue tubing that ended in a cuff looped around her neck. It’s purpose was to deliver warm moist air to her trach - the white plastic hole in her windpipe through which she breathed. In place of the humidifier, I cautiously fastened a T-shaped piece of plastic to the tip of her trach. Tight paper coils capped each arm of the T, filtering and warming the air with each of her inward breaths.
The added resistance of the filters made Jacqui cough. I lunged for the ever-present tupperware bowl and held it beneath her chin just as she began to retch. I tensed, willing her to stop, praying that this time she wouldn’t empty her stomach of its entire contents, but it wasn’t to be. Her eyes glazed over and her face flushed, taking on a misty sheen as she seemed to retch endlessly. I held her, praying for it to stop, and she finally collapsed. Limp with a shudder. I cleaned her up and then poured the soured contents of the bowl into a large graduated pitcher, calculating what she had lost. Over an entire feeding. I sighed as I recalculated the rate at which her feeding pump would need to run to make up for the lost feeding and then turned my attention to her breathing.
Mucus had collected in her trach and her lungs rattled as she struggled to cough it up. I watched several minutes allowing her the chance to cough it up on her own. I always felt cruel doing so, particularly when I knew I could suction the mucous away from her trach in seconds with the suction machine. However I forced myself to wait, knowing that the coughing although torture to watch, was good for her lungs and made them stronger. Suctioning her would only make her gag and throw up yet again anyway. A vicious cycle. I was relieved when she finally managed to clear her trach on her own and gently placed the T-shaped filter back over the trach’s tip.
I bundled her into warm clothes and wrapped a scarf loosely around her trach to provide an added layer to further warm the air she breathed, and then we stepped out into the softly falling snowflakes. She blinked as the cold air struck her face and I set her down gently in the thin layer of snow gathering on the lawn, giant snowflakes whirling before her eyes. She stretched out a mittened hand and watched in fascination as a flake landed in her palm. Although unable to make a sound, her eyes lit up with a smile making up for the laughter I couldn’t hear. I snapped a few priceless photos just before she began to cough. Just like that it was over. Simple joys of childhood and motherhood clipped short as a rising current of symptoms swept her back into the role of patient and me back into the role of nurse.
I scoured the frozen tear tracks from my cheeks with the back of a gloved hand and looked back through my lens. Kyle turned to me with a grin and behind me I heard Jacqui’s infectious laughter just before a snowball thunked against the back of my head. Kyle erupted in laughter and came toppling toward us like an overstuffed feather-pillow tumbling through the air. I scooped them both up and kissed their cold little faces as they giggled. And I realized something. I hadn’t missed anything. Not a thing. We have treasured our children through every tear and every smile. And our lives are the richer for it.
While there will always be those moments where my heart mourns the loss of a perfect, healthy babyhood for Jacqui, those days were not completely devoid of joy. There were countless moments filled with exuberant, heart-welling joy, buoying our hopes that there would one day be days like this one. What is perfection, anyway? It’s arbitrary. Elusive. Who needs it when one can have contentment instead? Faith that the Lord holds all in the hollow of his hand. Knowing that each moment is all that it should be. Nothing more, nothing less. Trusting that each moment has a purpose. That is where I find my joy. I cannot explain it, but there is something about the tears shed back then that makes the laughter on days like today infinitely more precious. And I am grateful. So grateful for the gift of knowing the frailty of life — the precious nature of it. Because of that knowledge I have been watching, remembering, treasuring. Licking life’s plate clean. Not missing a thing as I soak up days like this one.

I handed Kyle off to Ken as Jacqui tugged me towards the sledding hill. She looked up at me, laughing as we boot-trudged upwards and I caught a glimpse of Kyle grinning as Ken swung him in a wide arc through the chill air. We set down the sled at the slope’s peak and Jacqui piled on, shrieking in anticipation, “Let’s go reeeeely fast Mom!”

And off we flew.

Again and again, laughing, tumbling down. Lobbing snowballs.

Building a snowman. Grinning as our teeth chattered.

Watching the sun sink behind the lodge.

Wowing as sun set snow ablaze with electric shades of pink. Warming hands on mugs of hot chocolate. Kissing happy-sleepy little heads as they snuggled under heavy, warm quilts for the long drive home. Even with inevitable storm clouds ahead, life is perfect in all the ways that really matter. We have faith. We have love. We have joy. We have each other. Now that’s picture perfect.
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Jacqui: *sighhhh* Are we dair yet?
Ken: Pleeeeease stop asking that.
Me: She’s just excited…

Jacqui: Dair’s some snow Dad! Stawwwwwwp!!! Can we jess stop dair an’ play?
Ken: No.
Jacqui: Why not?
Ken: Because.
Jacqui: ‘Cause why?
Ken: We need a nice hill for the sled. We’re not there yet.
Jacqui: I fink you need ta dwive fasser. Dis is takin’ a reely very long time.
Ken: *sigh* Jacqui… just stop…
Jacqui: *sigh* Dis was posed to be zillerating, not zausting.
Me: What???
Jacqui: (scowling) I not sayin’ it gain. You heered me.
Kyle: Ooooooo. Druck. Vrooooommm!!

Ken: (just before a very long hill) I think we’re going the wrong way. I think we should have turned back there.
Jacqui: No! No turning! Dis is da very right way ta go! Up da hill Dad!
Ken: *sigh* Jacqui … no more talking.
Jacqui. Hmmph! (muttering under her breath) Dis is too da right way…
Ken: I think we need to turn around…
Me: You’re serious?
Ken: I think we were supposed to turn back there.
Me: The other road went back down.
Ken: I think it goes down and then back up.
Me: Sure. That’s what one usually does when they are in search of high-altitude snow.
Ken: What?
Me: Go down and then back up.
Ken: (look of death while turning the car around)
Jacqui: No, no, noooooooo! Dis is da very wrong way!!! Go back dat way!
Ken: Jacqui! I said no more talking. I mean it.

Jacqui: (muttering while pulling Ken’s cap over her eyes) I jess can’t watch dis…
Me: (watching the snow get sparser) You’re sure this is the way we’re supposed to go?
Ken: (another look of death in my direction)
Me: Seems like we’re just going down and not very much up…
Jacqui: I telled you… dis is da very wrong way. You needta go back dat way Dad!
Ken: Jacqui… enough already.
Jacqui: (more indiscernible muttering)
Me: (giggling)
Ken: (another look of death)
Kyle: Druck, druck, druck! Vrrrrrooooooom!!
Ken: Everyone just be quiet please!
Jacqui: (mumbling softly to herself in a sing-song-ey voice) Who do ya ask wen ya don’ know which way ta go? Riiiiiiiiiiight… Da map! (begins singing “The Map Song” from “Dora The Explorer” in a whisper) …I’m da map, I’m da map, I’m da map…
Me: (uncontrollable giggling)
Ken: (yet another look of death) Absolutely no blogging about this.
Me: (mock salute)
Ken: I mean it.
Me: (more giggling)
Ken: Ok. Hand me the map.
Me: Uhhh. Yeeeeah. About that…
Ken: Well?
Me: We don’t have one.
Ken: What do you mean?
Me: Well, you remember when we bought the car the year before last?
Ken: Yeah…
Me: Remember how the glove box was empty except for the manual?
Ken: Yeah…
Me: Still is.
Ken: Still is what?
Me: Empty.
Ken: We never got a map?
Me: Well, actually we did. Last night when I was grocery shopping, as a matter of fact.
Ken: Well, where’s that one?
Me: At home on the kitchen counter, I believe.
Ken: (another look of death)
Jacqui: Snow is dat way peeple!!
Ken: Jacqui!
Me: I think we should have stayed on the road we were on.
Ken: The resort was at milepost eighty something on highway ‘X’.
Me: And we’re on highway “Y”?
Ken: No. We’re on highway “Z”.
Jacqui: (mumbling) Oh, jess stop counting numbers… da snow is dat way…
Me: So if we’re supposed to be on highway ‘X’, why are we on highway ‘Z’?
Ken: *sigh* I think highway ‘X’ turns in to highway ‘Z’.
Me: But you don’t know?
Ken: (another look of death) Well, I would know if I had a map, wouldn’t I?
Me: (sheepish grin)
Me: So do you think highway “Z” has turned into highway “X” yet?
Ken: (completely exasperated) I don’t know.
Me: Well you said it was at milepost eighty-something. What milepost are we at now?
Ken: Gee. I don’t know. It’s a little hard to see those two-foot high milepost markers under four feet of snow.
Me: Oh. Yeah. Right.
Ken: (eye rolling).
Jacqui: (apparently gives up all hope and begins singing softly to herself a tune of her own creation) Dis da wrong way… da very wrong way… we never gonna get dair, dis a no snow day… wrong way… dis da wrong way…
Me: Ok. I think we’ve explored the downhill option long enough.
Ken: You think we should turn around?
Me: (rolling eyes) Uh… Yeah…
Ken: (turning car back around) Alright…
Jacqui: (peeking out from under Ken’s cap) Well. At least we are driving da car to da mountain ‘gain. Daddy? Will dair be enny snow left wen we get dair?
Ken: *sigh*

Update: Finally reached our destination. Arrived mid-afternoon instead of mid-morning as planned. Kids had a ball. More to come in following posts - stay tuned!
Ken: (on the way back home) So I was thinking we should try taking highway ‘Z’ back home instead of highway ‘X’.
Me: (look of death)
Filed under: Laugh Out Loud, Munchkin Photos, Outdoor Fun, Reasons I Dye My Hair, Road Trip, Sage Advice, Snake's n' Snails, Sugar n' Spice, seasons by Childlife
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