What’s it like to grow up with a sibling with Down syndrome?

“Are they twins?” the woman asked me in line at the checkout.

My precocious 2-year-old with blonde curls and a big smile sat content in the shopping cart while her big (yet petite) 4-year-old sister, Kate, smiled and snuggled against her.

“No,” I replied gently, “But I get that all the time. They’re 21 months apart.”

Twenty-one months may be between them — but that’s all that keeps them apart. The rest of the time, they’re almost inseparable.

In many ways they are like little twins — similar sizes and hairstyle, sharing clothes, playing constantly, bickering at times. When they were younger, they even had their own “twin speak:” a demonstrative, secret babble language that only they seemed to understand. (Though we now understand their conversations better as they’ve both grown older.)

Their bond is one that I, an only child and mother of 4, love to observe for many reasons. It is a bond of sisterhood that both comforts and fascinates me — as does the relationship between all of my children. It is also one that I couldn’t imagine just four years ago.

You see, when Kate was first born with Down syndrome, I wasn’t sure what our family would look like or how it would continue to grow. Kate had a big brother — but would we have more children? If we could, should we? I had always dreamed of having a big family — would a Down syndrome diagnosis affect that? All families have many unique, personal reasons for their family size, would having a child with special needs affect ours? What would those sibling relationships look like?

Shortly after those questions came to mind, I read a study that surveyed hundreds of siblings to find out how they felt about having a brother or sister with Down syndrome.

The results included:

More than 96% of siblings indicated that they had affection toward their sibling with Down syndrome.

94% of older siblings expressed feelings of pride.

Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome.

More than 90% plan to remain involved in their sibling’s lives as they become adults.

Those statistics were encouraging — but what has been so much more encouraging? Our own experience. And not because our other children treat Kate particularly special — but because she’s just one of the bunch, loved and accepted for who she is.

Her big brother is a pal, protector and sometimes pest, as big brothers are. Her little sister is her best friend and also a stealer-of-toys who teaches Kate to stick up for herself and develop an independent spirit. Her youngest sister — the baby in the house — brings out her nurturing side, as Kate loves to hold her, hush her, sing to her and softly stroke her face.

These little people by her side support her, while spontaneously challenging her to be the best she can be — and she does the same for them.

Since writing this blog, I have received many lovely notes from parents of children with Down syndrome — but I have especially enjoyed notes from siblings. The ones who confirm everything the aforementioned study shared with their own stories of growing up side by side with a sibling with Down syndrome.

Full of pride and doting, their encouraging notes have told me that their sibling with special needs “brings out the best in them.” That their time with their sibling with Down syndrome has been “the best time of their life.”

Some siblings have gone on to pursue careers in fields helping those with special needs. Others joyfully help care for their sibling. Others have shared heartwarming stories of how life is more meaningful. But all of the stories are love stories. They are words laced with selflessness, joy and a unique perspective that have shaped their own lives.

I am asked often if my two little girls are twins — a comparison that makes me smile. Because they’re right — my two little girls are so much alike, even in a world that often only sees Kate’s differences.

And isn’t that the beautiful thing about family? We are all so very different — but in the family ties that hold us close, we have the opportunity for the closest bonds.

And the greatest love.

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Kate and her little sister

Why you should always be who you are meant to be!

We just moved into a new house out in the country and there is a portion of our land that we are dedicating to be “wildflower land.”

We threw down some seeds, stomped it in to the freshly tilled dirt, and are hoping that come Spring it will be abuzz with watercolor blooms and honey bees.

Wildflowers are one of those things I think God gave us just to make us smile.

But as I learned more about our little field of pretty, I realized that wildflowers are much more than just ornamental. They are also a great example for how we can all better bloom in this life — how, as Thoreau said:

“All good things are wild and free.”

The wild and free flowers are not uniform beds of well-behaved gardens, which, though beautiful, often require a lot of maintenance and fertilizer. Rather, these little beauties tend to be much more hardy because they thrive when they are planted where they are meant to be planted.

And because they are just being themselves — who they are meant to be — they are incredibly fruitful, creating a lovely ecosystem that is beneficial for neighboring plants and animals.

What I also love about wildflowers: they often surprise us, popping up in the most unexpected places, often when we need them most.

For instance, when the smoke cleared after California’s Santa Monica Mountains were scorched with wildfire — tiny blossoms of pink, yellow and blue coated the hillsides. Providing comfort to the bald, blackened earth, the seeds of those specific flowers actually needed the heat of fire to germinate — blooming best when needed most.

But what I find most intriguing about wildflowers? Their diverse nature. Some are almost neon in color, some are subdued pastels.

Some have round, plump petals — while others are delicate and thin.

Some reach high above the rest, as if on watch for bees and butterflies — while others sit soft in the shadows watching for the crawlers and climbers among the dirt.

But together — they create a stunning landscape both purposeful and pretty. Every difference celebrated. Every unique quality needed. Every colorful one adding a little something special — just as they are.

Just like all of us.

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I asked my son to take pictures of what he thinks is beautiful. Here’s what I discovered.

One of my favorite things about motherhood is seeing the world through my children’s eyes.

They have the gift of a fresh perspective — the ability to see beauty in the every day, magic in the seemingly mundane. I am often amazed at the details my 5-year-old son notices in the world, the questions he asks, the curiosity with which he approaches life.

Poet William Blake says children have the ability “To see a world in a grain of sand, and a heaven in a wild flower, hold infinity in the palm of your hand, an eternity in an hour.”

Like most kids, my son loves to take pictures. (I can still remember some of my childhood photography of all of my Popples lined up for a portrait on my grandmother’s couch.) So this morning I gave in and let him play for a few minutes while I finished a project:

“Maybe you can go around the house and take pictures of things that you think are beautiful,” I offered, handing him my phone camera. “Things that are beautiful?” he asked. I nodded with a smile. So off he went — for a little adventure around the house searching for beauty.

I expected to find a handful of photos of action figures or other favorite toys or maybe the dog — but when he returned to show me his photography, I loved seeing his response.

There was the usual picture of his foot.

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A snapshot of my favorite mug.

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But most all of the other photos were not of toys or art or objects — but of what he thinks is most beautiful in our home.

The people.

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Many shots were simply him taking pictures of pictures of our family.

“He looks really cool,” he said of the photo of his Great Grandfather who he was named after.

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He took a picture of his grandparents. He took pictures of his aunt and uncle, his great grandmother, his little sisters.

But most of the pictures of what makes his heart happy were simply photos of his father and I.

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“I love this one best. It’s my favorite,” he said, of the photo he took of one of our engagement pictures.

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It was just a fun little game taking some pictures — but what I was reminded of through the eyes of my child today is that what he looks at most in life is us. His parents.

And that so much of what he learns about the world starts with how we love in our world. How we love each other.

Five-year-old boys can be busy, energetic, and easily distracted by many things. But no matter how much it may seem like he’s not always paying attention — he is always watching.

Four years later, it’s not about Down syndrome

Four years ago, it was all about Down syndrome.

That rainy November afternoon when Kate was born — when the neonatologist shuffled in quickly and told us as cold as the rain that “there’s no good way to say this — so I’ll just say it: your daughter has Down syndrome.”

On that day, it was all about Down syndrome. The surprise stung deep — I couldn’t see her without thinking about it. I couldn’t see anyone without having to talk about it. She was born three weeks early and laid snug, swaddled in a blanket in the NICU because she was small and not holding the right temperature. We had to drive home from the hospital without our new baby — I sat in the passenger seat, staring out the window at everyone else going on about their usual day.

Every day for the next three weeks, I drove up and down Cooper Street, across the railroad tracks and past the university, from our house to the hospital. I breastfed her through wires in a hard hospital chair with an Occupational Therapist checking in on our feedings and a NICU nurse telling me about other mothers she knew who had children with Down syndrome. I cradled Kate’s fuzzy head, rubbed my finger along the outline of her face, and longed to just take her home.

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My delivery doctor came to visit me one afternoon in the NICU while I sat holding her. He squatted down and said, “I’ve been looking for you. I wanted to check on you and see how you’re doing. Many families I know who have children with Down syndrome feel that it’s a great blessing in their lives.” I nodded and agreed with all of my heart. But I still cried because it was all so new. Because in those first days, it felt like life was all about Down syndrome — what it had given us, what it had taken away, what it meant.

Kate’s 4th birthday is next week.

I’m thinking of making cake batter and pouring it into a waffle maker for a fun birthday cake. Waffles are her all-time favorite food. We’ll dance on her birthday, too, I’m sure, because dancing is one of her favorite past times. She’s got rhythm and moves and a twirl that would knock your socks off. She’ll be surrounded by her big brother who she’ll probably chase around the house pretending she’s a dinosaur. She’ll make those crazy “I’m gonna get you” eyes and growl in that way that makes her little sister giggle. She’ll sing Happy Birthday the loudest with her hands in the air and she’ll smile that contagious smile that takes over her whole face — and everyone else’s.

The day of her birth may have been focused on a Down syndrome diagnosis — but her fourth birthday will be all about her. Who she is, what she loves, the people who love her.

When Kate was first born, it was hard for me to see the little girl she is now because all I could see was a diagnosis I didn’t fully understand. But as time has passed, I have grown to understand more than a diagnosis, I have come to understand her. And because of her, I have come to understand so much more.

Because even though I write about Down syndrome a lot on this blog — advocating for acceptance, inclusion and compassion — my writing is really not about Down syndrome specifically either. It’s about people — accepting each other for our differences, recognizing that every person has a unique path, purpose and story. It’s about taking the time to learn more about people we may not understand or are maybe even a bit afraid of. It’s about not underestimating each other. It’s about recognizing the incredible beauty and worth of all human beings.

Down syndrome will always be a part of our lives, of course, but it’s just that: a part. It’s a flower in our garden. A sentence in our love story. It’s just part of the unique girl who we’ll celebrate next week with her favorite things that make her her: laughing, dancing, and so much love.

Four years later, it’s not about Down syndrome

She is called Mother

She is called Mother.

She is the one who, for 9 months, becomes two people in one as her belly stretches tight around the growing baby within her. Sometimes those first days of pregnancy are spent hovering over a porcelain toilet, napping under a fuzzy blanket, or — with little ones at her side — wiping noses, changing diapers, and doing her best to not inhale the detestable aroma of first trimester chicken nuggets as she makes dinner.

The days may be joyful or tearful or tiring, but at night when the still moon gazes in through the window blinds to check on her, there may be a moment when she realizes with great awe that she is being nudged in the rib by a person who has never existed before — a person who will one day soon look up with adoring eyes and a tug of her skirt and tenderly call her, “Mother.”

She may be afraid. She may not feel ready. She may be a first-time mother or a mother to many — but still, she is Mother: the person so essential to life, that even the Earth is affectionately called Mother Earth as it holds us close to its warm surface with the promise of life and safety.

And soon, before too long — though some days may seem to last forever — that heavy body that has multiplied into two will contract and bend and miraculously push forth a tiny person with delicate, soft skin and squinting eyes and miniature fingers that fit perfectly into the palm of her hand. Intoxicating, exhilarating, and unnerving those first few nights may be as she lay awake to watch him, make sure he’s breathing, be sure he’s real.

She has learned better than anyone over the last 9 months that her body is now meant for greater things — and will continue to be as she feeds and holds and rocks and comforts this tiny baby with the very body she grew him with. She had multiplied into two — and now may wish she could multiply herself as two hands can often feel inadequate with other children at her feet, a toddler at her side and an infant on her breast.

And even with only one child in her lap, there may be moments when the greatness of her vocation seems more than she can handle, but may she be comforted — for these children are only on loan from a greater creator who promises to help her every step of the way. And she will need help.

From family. From friends. From neighbors and community. For there are few people more heroic and brave than a Mother — but she can only give what she has. She who is called Mother needs others to call on, to ask advice, to give a baby to hold, or to simply sit with. For though she is never alone, some days may feel lonely. And a Mother knows how important it is that we care for each other.

Mothers are a compass to show us our way and a lighthouse to bring us home.

Their work often goes unsung, unpraised, and unnoticed and yet it is a work more important than anything else in this world. She may not build a great business, but Lord knows that a great home produces more life-changing work. She may not be famous to many, but she will be unforgettable to those who matter most. She is the living example of the great truths of life that are so often forgotten, for a mother knows that in giving, we receive.

She is called Mother. A name she will never outgrow, just as her children will never outgrow their need for her. For she was there when they began. She is a part of them, just as they are so much a part of her.

And in the moments when her life may seem small, may she know her incredible worth. That every wiped nose, kissed boo boo, changed sheet, gentle reprimand, sleepless worry, pound gained, laundry pile folded, floor scrubbed, scrapbook scribbled in, tear shed, fear overcome, mistake made, forgiveness asked, and lesson learned matters. They are the little things that mean everything to the ones she holds dear.

She is called Mother.

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