When you have someone with developmental disabilities in your family, little moments become cause for great celebration. And it’s many of these little things that I treasure.
The feeling of Alexis’s uneven steps as we walked hand in hand; the way she’d come into my room, hearing aids and glasses out, to say goodnight; the expression of sheer pride on her face when she was praised for being brave or some unexpectedly precise comment; how, when she said something she knew she shouldn’t and you gave her a look, she’d immediately follow it with a compliment to get on your good side; the way she’d warm her cup of tea in the microwave only to sit down and become preoccupied with something until it grew cold and needed to be warmed again; how she’d throw in a word in sign language when she wanted to give a point particular emphasis; how she’d bounce to the beat of a song if she was really feeling it; the way she’d get in cleaning modes and whisk off cups before we were finished with them; how she’d draw similarities between objects because of their shared color or shape; the way she’d pout and make kissy faces at the rearview mirror of the car when she was wearing lipgloss, her vigorous head massages; how she got slightly shy if you asked her to sing a song by herself but would do it softly and smilingly anyway; her incredible ability to find a dance partner anywhere; the way she’d ask “right, Simone?” for confirmation on things; the way she was beautiful –and knew it; and how she somehow felt that as my older sister she was there to protect me.
Though small things were cause for great joy in her life, Alexis’s presence was anything but little. Many specialists put a limit on what they thought she could achieve. But Alexis was never going to be content with achieving simply what was within reach. Alexis constantly surpassed limits no one thought she could. Walking, talking, playing the piano, mastering the use of the Internet, knitting, and unlocking her inner artist to name a few. Despite all the obstacles in her way, she attacked whatever she wanted to do with a zeal that was undeniable, trying again and again until she got it. As her favorite witch Elphaba from Wicked, a play she discovered via her online escapades, says, “Nobody in all of Oz, no wizard that there is or was, is ever going to bring me down.” And that’s Alexis. Her perseverance has inspired me my whole life, and always will. Though Alexis’s passing has left our family devastated, if there’s anything she’s taught us, it’s how to be strong and to carry on when things seem impossible. For this, and for so many other things I cannot express with words, I am eternally grateful to her.
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