She doesn’t know it, but the best gift T could possibly get for her 12th birthday is a cure. Batten disease won’t be cured by this Thursday – I’m a realist – but real progress can be made. As a friend of Taylor’s Tale, a friend of mine, a friend of T or a friend of our family, please help us save my sister’s life in honor of her special day. Any amount will go a long way in the world of Batten disease. To make a secure online donation, simply click on the link below to be taken to the donation page on our website. Thank you for helping us write the happy ending for children like my beloved little sister.
Birthday Wish
When I was 15, I came home from school on a dismal January afternoon and found my mom sitting cross-legged in the floor of her closet. As I stood in the doorway, my backpack still slung over one shoulder, she told me she was pregnant, due in August.
A high school sophomore just a few months shy of her 16th birthday, I couldn’t fathom the idea that my mom was pregnant. So, my supremely adolescent response to the whole matter was to grab my Sony Discman (still cool in 1998), lace up my sneakers and run out into the sleet and freezing rain. More than an hour later, I returned home with frozen eyelashes and wet clothes and walked right past my mom. I didn’t bring up her news once that night – and eight months later, when my little sister was born, I found various reasons not to make it to the hospital. The afternoon Taylor came home, though, I raced my now-husband up the stairs to peer over the side of her crib (he won the race and maintains that he has known her longer). First place or not, I was instantly hooked.
That day feels like it happened in another lifetime. This Thursday, the baby I fell in love with the moment I saw her will celebrate her twelfth birthday. Over the past 12 years, we’ve watched countless movies together, ridden bicycles in the driveway, done silly dances in our socks on the fireplace hearth, raced down the corridors of an underground mall in Toronto in T’s stroller, gotten our nails done, cheered for the Tar Heels, bought special treats for each other’s dogs, eaten lunch with the Disney princesses and collected their autographs, rocked to the Cheetah Girls, Miley Cyrus and the Jonas Brothers at the local arena, built towering sandcastles in the sand, let the waves crash over our ankles and feet and, best of all, given each other lots of hugs. I thank God every day for the sister I never imagined I’d have or even knew that I wanted. I pray to God every day that the memories won’t have to end.
Fly High
I was driving to the office this morning, counting the hours of good sleep I’ve gotten lately (very few) and wishing I was still in my bed. But then, rush hour traffic graced me with yet another red light, and as I sat there in my car, I suddenly stopped thinking about when I would get to my email and discovered the way the leaves of the big, old trees, silent sentries watching over Providence Road, filtered the morning sunlight. And I knew then that if I was still asleep, I would have missed that.
Taylor has never once forgotten to look for joy in the most unexpected places and has a knack for finding it when most of us would just pass on by. She can’t see her movies, so she listens. She couldn’t see the over-the-top production side of the concerts she’s attended the past several years, but she can sing the lyrics to every song and will be the first to tell you that the Jonas Brothers are ‘hot.’ She couldn’t see the blooming flowers and blue sky Mom and I saw as the three of us took a walk recently, but she proudly held Sunny’s leash, felt the cool spring breeze on her face, put one foot after the other and never once complained that she was the only one who couldn’t enjoy the azaleas. And though she needed my help finding each rung of the ladder on our cousins’ playground set when we visited them last month, when it was her turn to swing, she swung higher than anyone. She had a huge grin on her face, and she reached for the sky.
Fly high, Teaser. I love you.