Beyond Ordinary Blog Carnival — Remembering

She runs up ahead, a bundle of wide-eyed excitement. "The elephants are this way, Mom! Come on!"

Ken flashes me a grin and takes off after her in a full-out sprint while Kyle and I follow along with the stroller at a more sane pace. I watch her as she zips along in a giggling blur of pink and ponytails. I can't help remembering how very different our last trip to the zoo was…

At two-years old, Jacqui was trach-free and we were eager to start experiencing the world with our curious little toddler. A simple two-hour trip to the zoo took careful planning back then, though. Although her trach was no longer a concern, Jacqui still had a G-tube and undiagnosed CVS.

Packing for the day was anything but simple. There was her feeding pump with its battery and backpack, a mini cooler for her pre-mixed hypo-allergenic formula, a spare G-tube kit and supplies, her decompression tube, her medications in pre-drawn up oral syringes to push through her G-tube at the appropriate times, a couple of changes of clothes, plus all of the "normal" elements of a toddler entourage.

Despite all of the planning, there was no way to plan for a day free of a CVS episode, and Jacqui was having them regularly back then. We put off her noon feeding as long as possible, letting Jacqui experience an untainted hour of her zoo day before her feeding put her out of commission for a couple of hours. We rested with her out on the main lawn until she rallied and then went off to visit elephants, zebras and polar bears.

Despite being ill, Jacqui reveled in every moment, soaking up the joys of the new experience. Back then, Jacqui had not yet had her first major resection surgery and her birth defect, a lymphatic malformation was still prominent. All throughout the day I breathed constant prayer of gratitude that Jacqui was young enough that she was unaware of the stares, the whispers, the gasps.

If I live to be one hundred, I will never forget the pain that each pointed finger gouged from my heart, or the hurt I felt for her as a young mom abruptly tugged her child away from Jacqui's side with a look of revulsion on her face. That horrible look — directed at my beautiful little girl. It was beyond bearing and I wondered to myself how I was going to teach Jacqui to face such moments with grace and courage when I failed at it so miserably.

The worst moment of the entire day came as we approached the polar bear exhibit. Jacqui toddled toward the glass wall housing the swimming polar bears and as she did, a line of four adolescent boys cut in front of her, backs to the exhibit, mouths agape, staring at Jacqui. They completely blocked Jacqui's path, snickering, pointing, throwing elbows at each others' ribs. But worst of all they just stood there, backs to the polar bears, staring at my child as if she were the exhibit that they had come to gape at.

I swept them aside, shamed them into civilized behavior and then told them about Jacqui's condition and the numerous surgeries and procedures she had faced. They left contrite and hopefully forever changed for the better. I scooped Jacqui up, held her close and cried, wishing that I could protect her forever, praying that she would never know the pain of such a moment.

And then there was today…

Today there are no stares, no whispers, no pointed fingers. Just Jacqui, and her boundless joy in the moment. As we walk along, I find myself both amazed and proud as Jacqui stops to talk warmly with a group of special needs children during what is likely a rare outing for them.

They are accompanied by an array of caregivers, some pushing wheelchairs, some holding hands, some packing shoulder bags carrying medical equipment. And Jacqui greets them as they should be greeted, as they deserve to be greeted. She greets them as equals. She looks them in the eyes, says hello, talks of the wonderful day, asks if they are having fun. And I join her. Together we trade smiles and laughter with children who are every bit as beautiful as those who can run and walk and play without the world staring and pointing in their direction with a whisper.

In that one little moment I realize something. I realize that my prayers all those years ago haven't gone unanswered. Hearts have been changed since that day. Mine, first and foremost among them. I am the one who is forever changed — forever changed for the better with Jacqui as my guide.

What About You? What Would You Like To Share About Your Beyond Ordinary Life This Month?

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