If you ask Celeste what she’s like, she’ll press these buttons on her talker:
Cuddly. Happy. Play!
And we couldn’t agree more—it’s the perfect description of her. She’s a gentle force, full of joy. Her big, quirky smile is always shining, and she loves to play. She’s the proud owner of Piggy, a stuffed animal who rarely leaves her side. Even though she doesn’t speak yet, she’s figured out how to make the perfect pig sound—oink—and it never fails to make us laugh.
If you meet Celeste for the first time, she might be shy and hide behind us. She knows that she can’t communicate the way most people do, and that makes her feel inferior. It took six years before we heard her first consistent word— a heart-melting mama. We know it will take hard work for her to achieve the 10 spoken words that separates “verbal” from “nonverbal”, but we truly believe she’ll get there one day. Her journey has given her more patience and determination than most children her age.
Today, she communicates through sign language and with the help of her talker—a speech device that gives her access to over 1,500 words and the ability to build full sentences. She enjoys reading and has learned to type, which gives her another powerful way to express herself.
Still, despite these possibilities, it saddens us that many typical childhood experiences remain out of reach for her: playing spontaneously with a friend, riding a bike, blowing out birthday candles, or changing the clothes on her doll herself. Her challenges include more than just limited speech, low muscle tone, and fine motor difficulties.
She does have support, of course—but her dependency sometimes places her in vulnerable situations. One time, her school transport accidentally took her to the wrong school. She couldn’t explain the mistake to the driver, and although the situation was eventually resolved, she came home scared and deeply upset.
Thankfully, she loves her school and her teachers and has long since moved past that incident. In many ways, Celeste is delicate—but she’s also incredibly resilient, and not afraid of making clear plans for her future. She knows exactly what she wants for dinner (pancakes), what she’ll ask Santa for this year (a flamingo), and that when she grows up, she’ll become a baker and sell pastries.
Celeste came into our lives ten years ago, and she’s changed our lives forever. Some days have been rough, others have been full of silliness and laughter. Every single day, we feel an overwhelming love from her. Naturally, we worry about her future. What will happen when we’re no longer here? Will she be alone? Will she be cared for? Will she still be happy?
But we hold on to hope. And we advocate. And we see hands reach out from all corners of the world to help us. Together we make the future a better place for kids like Celeste.