Make-A-Wish America granted Caleb Barker and his family a trip on Walt Disney Cruises in September! Caleb’s dad said, “we are very grateful and we just feel really blessed that we got to experience all this as a family and we don’t take it for granted or take it lightly.”
What are your best memories from this past year?
Read about their trip here.
Great video from the Grace Wilsey Foundation! Rare is NOT an excuse.
“Maybe Christmas, he thought, doesn’t come from a store. Maybe Christmas, perhaps, means a little bit more.” -The Grinch
Merry Christmas from all the Whos (BBDF) down in Whoville (Austin)!
Be sure to check the Batten Blog for research updates in the coming weeks! Danielle just got back from Naples, Rome, and Hamburg (with only a few travel hiccups along the way). On her whirlwind trip, she was able to meet with our partners overseas and pick up a couple German and Italian phrases! It was un viaggio fantastico!
Did you catch this article earlier this month about Austin’s Automotive Specialists? Jamey and Heidi Whitlock have hosted a golf tournament annually for BBDF, recently joined the Development Board, and are sponsors of the upcoming Run to the Sun Relay. Thanks for the shout out in your article and all your support!
Christmas After Batten
Family has always been important to me, and my family has always made a big deal out of Christmas.
Though my brother and I are grown and my sister is 16, I know that on Christmas morning, we won’t be allowed downstairs until my parents are ready and my dad has his camera phone locked and loaded. Santa Claus doesn’t wrap the gifts he leaves at my parents’ house, and when Stephen and I were little, Dad thought we’d try to sneak into the family room before dawn to peek at the goods. To foil our plans, he set booby traps, like paper Scotch-taped to the doorjambs and verbose notes from Santa’s elves warning us of the measures in place, from retinal scans and tripwires to claymores and drones. He always signed the notes with a smiley face and “Merry Christmas.” After Dad led our human train into the family room at an agonizingly slow pace and we dove into our respective piles of gifts, we dug into Mom’s homemade monkey bread and egg and sausage casserole and ate till we couldn’t eat anymore. It’s been years since I wrote a letter to Santa Claus, but Dad still sets traps and writes notes and leads the train every Christmas morning.
I still remember the first year Stephen and I had to help Taylor find her way to the family room. She’d lost her vision to Batten disease and was unsteady on the stairs in her nightgown and fuzzy socks. In time she’d develop such a keen sixth sense that she could fly up and down those stairs despite the blindness. But in those days my sister was still afraid of the dark. We all hoped and believed she’d find a way to beat Batten disease. Lying in bed at night I even imagined she’d see the light again one day.
So much has changed since my sister’s diagnosis in 2006. When someone you love is fighting a chronic illness with no treatment or cure, you fall into a habit of marking time by holidays and life events and how much things change from one to the next. I remember how difficult it was watching Taylor search for the stairs that first Christmas After Batten Disease. But now I’d give anything to have one day with my sister as she was then – still able to pull surprises out of her stocking and sing along to her favorite Christmas carols and eat Mom’s monkey bread at the dining room table. All normal things we take for granted. All things Batten disease has robbed from her.
I can’t go back in time, and I can’t cure my sister. But Christmas Day will still come, as it always has. And if loss has taught me anything, it’s taught me that life is about living in the moment and recognizing the good that you still have.
To read more of Laura’s posts, visit http://writethehappyending.com/