Posted by | CDS
by Dana McConnell, CDS Executive Director
Our lobby is the hub of over 30,000 family visits each year (that’s almost 120 visits per day!). Some of our families may only visit a few times a year for an evaluation, diagnosis, or follow up. But most of the time, families come in on a weekly basis for therapy. These are the children we have the privilege to watch as they grow, develop skills, and reach milestones.
I became especially close to three families recently who were willing to share their stories. It was not just their stories, though, that inspired me. It was their children who, no matter what obstacles were in front of them, found a way to communicate with me and warm my heart.
Hannah was diagnosed with Prader-Willi syndrome which gives her a constant sense of hunger. Although this condition can be life threatening, she has the biggest smile and radiates friendship and acceptance, whether you’ve known her your entire life or just a few minutes. After several months of visiting with her family, we both attended the same community event. Hannah recognized me from across the room and ran up to give me the biggest hug! I may have been in a crowded room of 200 community leaders, but in that moment, she made me feel like the most important one there.
Jax was born with CHARGE syndrome, a condition that causes hearing loss, vision loss, and balance problems which delay his development and communication. Early on, his family taught him sign language to help him communicate. Before he could even walk, Jax knew how to sign every letter in the alphabet. In fact, he was fascinated with anything that had letters: books, magnets, puzzles, you name it. Jax allowed me into his world one day and taught me a few signs. He taught me the sign for “tree”. He saw my name tag and signed my name. He then taught me how to sign his name. At only 3 years old, Jax became my teacher. I just marveled in amazement at his abilities.
Sophia is an active 5 yr old who loves soccer and playing with her brothers. She has Apraxia of speech, which limits her ability to communicate verbally. After talking with her mom, I gave Sophia a few smiles and an exchange of friendly gestures. Before long, Sophia showed me her finger nail polish and we started a conversation as if we were best friends. Now, every time I see my little Sophia, I’m transferred back to my own childhood as we play a hand-clap game of “Miss Mary Mac”.
I invite you to watch these three family stories in our newest video, Learn. Grow. Thrive.
