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.
parenting children motherhood kids Christian faith prayer Medically Fragile SAHM sledding winter fun
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