Meet Sylvia

Meet Sylvia

“I’ve heard it said, ‘If you know one person with Down syndrome, you know one person with Down syndrome.’ People with Down syndrome are individuals, just like anyone else.

Sylvia is a vigorous 5-year-old. She loves life. We had no idea when we named her Sylvia Joy just how much she would embody her middle name. She brings joy and is joyful. Her favorite things include bubbles, swimming, dancing, Little Orphan Annie, guitar, vacation Bible school music, pizza, French fries, the Berenstein Bears, smart phones, ice cream, playgrounds, cooking, and play dates.

Pretend play is Sylvia’s favorite. She loves running grocery stores, serving at drive-through restaurants and teaching a class full of children. “Hello, ma’am,” she says, “What do you want?” Or “Good morning children. Raise your hands.” She really feels like things work best if she is in charge and everyone responds to her instructions.

Sylvia is loving and very in tune to the feelings of others. If someone is crying, she will be the first person to rub their back and ask “Are you ok?” She gives warm and strong hugs. She loves to snuggle, especially right when she wakes up in the morning. But, countless times throughout the day, she’ll get my attention, hold out her arms and say, “Hug?” My answer is always yes.

Family is really important to Sylvia. She always wants to know where each member of the family is at any given time. If someone is away, she faithfully prays for them to come home. And, when we’re all together, she likes to pray and thank God for each of us by name. When we go out, Sylvia loves to shake hands and introduce herself and her family. She is always careful to establish our relationship to her, saying “my Lily” or “my mommy.”

We are so grateful that Sylvia is persistent. Though her speech may be difficult to understand, she continues to repeat herself and add signs or gestures until we understand her, long after most people would have given up. This character quality will serve her well as she conquers the challenges life may have for her.

Honestly, I’m not an expert on Down syndrome. I know there are three kinds of Down syndrome: 95% of people with Ds have trisomy 21 where each cell has 3 copies of the 21st chromosome, 3% have translocation Ds which means there is an extra copy of the 21st chromosome, but it’s attached to a different chromosome, and then 2% have mosaic Ds which means some cells have a third 21st chromosome and some don’t. Sylvia has mosaic Down syndrome. So far, it seems like that means that she experiences fewer of the physical challenges common in the Ds community. But, regardless what life throws at her, I can’t imagine her meeting each challenge with anything but the love, joy, and persistence that characterize her every day.

Before Sylvia was born, I remember seeing a video at a children’s museum highlighting the joy-filled lives of young adults with Down syndrome. “I want to know them,” I thought. Even now, if we’re out and about and see a person with almond-shaped eyes and a small bridge of their nose, something within me quickens. We’re in a special club. We all understand how amazing it is to know someone who is not encumbered by the craziness of the world, who lives, loves, and laughs with no impediment. When you really know one person with Down syndrome, you want to know more.”

written by Mom, Linnea