At 16, I didn’t want a little sister. But Taylor, an August baby, had my heart long before we celebrated her 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.
Before any of us had ever heard of Batten disease, my little sister had a secret for Santa Claus.
We didn’t let Taylor’s diagnosis in 2006 spoil our plans to pick out Christmas trees in the North Carolina mountains.
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.
Dad taught us to always leave milk and cookies for Santa – and carrots for his reindeer.
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.
A few years later, she sat in Santa’s lap for the last time. She couldn’t see him anymore.
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.
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.
This is the last time my sister traveled outside our hometown of Charlotte to visit extended family on Christmas Day.
The wheelchair arrived not long after that trip to Greensboro, in plenty of time for the next Christmas at home in Charlotte.
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.