I want to know her

“This is Kate. She’s almost seven!” I said to the room of 50 young girls looking attentively back at me.

“She loves to sing and dance. She loves cheese pizza — and playing with her brothers and sisters. She gets her long blonde hair from me — and her blue eyes from her Daddy.”

A sweet friend of Kate’s waved to her from the second row. Kate smiled back, but stayed snuggled into my shoulder — a bit shy from all the attention (but also loving it).

“Kate also has something called Down syndrome,” I continued. “It’s not something contagious, or something that someone can catch like a cold. In fact, it’s something she’s had since she was a little tiny baby inside my belly. It’s a condition that has to do with her chromosomes. Chromosomes carry our genes — does anyone know what genes are?”

A hand shot up in the front row from a well-read 9-year-old. “Oh, I know!” she said, looking quite put-together in her American Heritage Girls uniform. Kate and I were speaking at one of the first troop meetings of the year (Kate and her sisters are new to the group.)

“You do?” I asked, impressed.

“Oh yes,” the clever young lady replied, while showing me her thumb. “I’ve read about it in my microbiology book. You see how I can do this?” she asked, popping her thumb back and forth like a cool party trick, “Well, my grandmother can do that, too. I have her genes.”

“That’s awesome!” I said, “Your genes are perfectly unique to you — and they affect how your body looks and works.”

“I can also do this,” the little girl added, showing me a great double tongue curl. “But I’m the only one in my family who can do that.” We all giggled.

“Most people are born with 46 chromosomes,” I shared, “but Kate has 47. So she has one little extra chromosome, but that affects the way she learns.  So while many things come easy to Kate — like playing a great princess, or drawing a fluffy cat, or being a loyal friend and wonderful sister — other things can take longer for Kate to learn than typically-developing kids.”

I paused for a moment and looked at Kate who was now fully engaged with the group, smiling. I held her close, knowing the next point I was about to make was an important one.

“For instance, Kate is still working on her speech,” I explained. “She understands almost everything I say (unless it’s about cleaning her room!), but she’s still learning what words to use to express the fullness of how she feels. Kate loves to talk — and would love for any of you to talk and play with her — but you may have to be extra patient at times. Right, Kate?” Kate nodded with a grin.

“And if you don’t understand what she’s saying sometimes — don’t be embarrassed! You can always ask her to repeat herself — or you can simply tell her gently, ‘I’m sorry, Kate, I don’t understand.’ Or you can just guess and keep playing! If you’re patient with her, Kate will be very patient with you. After all, that’s what friends and families do — we help each other and are patient along the way. And having Down syndrome certainly doesn’t mean that Kate won’t ever learn how to speak very well — it just means it will take a little longer. That’s why we work on how to pronounce words and practice speaking a lot at home.”

Another one of Kate’s friends waved at her from the audience as I finished:

“So remember, people with Down syndrome are just like anybody else in the sense that we all love having friends, playing games, having hobbies, eating good food, going fun places and helping others. We’re all really good at some things and find other things more challenging. And we’re all different! Not one of us is exactly alike, and not all people with Down syndrome are exactly alike. And if you have any questions about Down syndrome or about Kate, please never feel too shy to ask us. We love talking about what we consider to be a very special gift from God for our family.”

The girls clapped eagerly as we finished our talk and Kate wiggled away from my side to go meet her friends who were now crowding around her. “Give me a hug, Kate!” one of them said. Kate leapt into her arms with a smile as wide as the sunset.

The troop coordinator had asked me to talk for the girls’ sake, but I found, in the end, the gift was all ours. What a joy it is to share this message: Do not be afraid of those who are different than you, rather, reach out to them, take a chance to meet them where they are — and you’ll often find a deep well of great connection and joy.

When Kate was just a baby, I read an article in the New York Times that stuck with me. In the article, John Franklin Stephens, a man with Down syndrome who serves as a “global messenger” for the Special Olympics, was quoted. He said:

The hardest thing about having an intellectual disability is the loneliness. We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘uh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.

I never want Kate to feel that way — or any of my children for that matter. I want them to all feel seen, loved, and known. And I carry that with me as a personal challenge — even when meeting those who may not have any sort of disability at all, but who may simply be shy, or new or just different. How good to say: I see you. How great to say: I want to know you.

The day after the talk, one of the mothers in the troop emailed me to say her young daughter couldn’t stop talking about Kate when she got home — “I want to play with her, Mama, I want to know her!” she said.

My heart was full. For what a beautiful girl to know.

The deepest desire of our hearts is to love and be loved. – Fr. Jacques Philipe

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2 Comments

  1. Suzy

    What a gift you keep giving and sharing. Hello to you, and Kate and her brothers and sisters, and to her Mimi (my friend Cindy).

  2. Dorothy Gogliormella

    I have two special friends with Downs syndrome have never met them, but know their grandmothers to me they always seem so special and brought to these families by God, also have another friend eight years old with Autism know him and family loves to come here to swim in our pool, again so special with a loving family

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