I’ve been officially mired in my longest stretch between posts since I started my new blog in February; the Charlotte summer has arrived – along with its trademark, near-unbearable humidity – and I think it has fried my brain.
I haven’t written about T in awhile, so a quick update: she “graduated” from elementary school the first week of June and officially became a middle school student. At the moving up ceremony, her teachers recognized her for her “inspirational attitude” and her “amazing accomplishment of learning Braille.” Well said.
Every time I see T lately, I’m shocked all over again at how quickly she’s growing up. She’s getting tall. She has a crush on a boy who’s not on the cover of a Disney album, but rather a real-live classmate, and she’s already talking about this fall’s sixth grade dance. I see her thinking often, the way she does – she gets real quiet and still and tilts her head as if to train her gaze on something off to the side, though her gaze is unseeing. Sometimes I want so badly to know what’s going through her mind, to understand what it’s like to have the things happen that have happened to her. But then I would have to have Batten disease.
I don’t know what is going through T’s mind day in and day out, but I think I have an idea of what’s in her heart.
Tears sprang to my eyes as T’s friend guided her up the steps to receive her fifth grade certificate on moving up day. Really – how many parents cry at these things? And I’m only the sister – the sister who sat with the dad in place of the mom who was on another continent trying to save her daughter’s life.
I’ll never step back, evaluate my sister’s life and decide that she has had her fill; I can’t say, “well, she made it to sixth grade and learned Braille and ran two 5Ks, and that’s already beating the odds;” it will never be enough, and I’ll never stop fighting for more. By that, I don’t mean to detract from the blessings that have graced the first eleven years of her life. I am so thankful for those. And, since I’m on the subject of moving up day and achievements and growing up, my heart goes out to those angels who have been a compass for T, who have encouraged her and loved her and carried her – and her family – when we could not walk. T is our angel; you are hers. Stick with us awhile longer – we have more miles yet to walk for this girl.