A Christmas Story

By Laura King Edwards

At 16, I didn’t want a little sister. But Taylor, an August baby, had my heart long before we celebrated her first Christmas.

Taylor's first Christmas

Our family and friends went to a production of “A Christmas Carol” in Raleigh annually. It was one of my favorite nights of the year, and I loved introducing Taylor to our family tradition.

A Christmas Carol

Before any of us had ever heard of Batten disease, my little sister had a secret for Santa Claus.

Taylor visiting Santa

We didn’t let Taylor’s diagnosis in 2006 spoil our plans to pick out Christmas trees in the North Carolina mountains.

Christmas tree farm

That same month, we took Taylor to Disney World, while she still had some of her vision. I secretly asked Santa Claus for a miracle.

Christmas in Disney World

Dad taught us to always leave milk and cookies for Santa – and carrots for his reindeer.

milk and cookies for Santa

I can still remember how much Taylor wanted to be an angel in the Christmas pageant at our church. Her vision was starting to fade, and the church volunteers were afraid she’d trip and fall filing into the choir pit above the sanctuary. But she didn’t.

Christmas pageant

A few years later, she sat in Santa’s lap for the last time. She couldn’t see him anymore.

visiting Santa

Later, when Mom wanted a picture for her Christmas card, I had to hold Taylor still for the camera. She smiled the whole time, though.

Christmas card

Since I can remember, Dad has orchestrated an elaborate series of events leading to Christmas morning gifts. This was one of the last times Taylor could walk down the stairs by herself to check her stocking.

family on Christmas morning

This is the last time my sister traveled outside our hometown of Charlotte to visit extended family on Christmas Day.

Christmas in Greensboro

The wheelchair arrived not long after that trip to Greensboro, in plenty of time for the next Christmas at home in Charlotte.

Christmas in a wheelchair

That was last year, and 2015 has brought more pain and suffering for my little sister. When I first looked at these photos, they made me sad, because I thought only about how much we’ve lost.

But as terrible as Batten disease is, I also see love and joy in these photos. I see individuals who’ve experienced things more awful than anyone should have to endure, but I see a family that has grown stronger in the face of a tragedy. That gives me hope. That helps me believe.

And I think that maybe now, despite the awfulness of Batten disease, I understand the true meaning of Christmas more than I ever did.

 

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