I love you because of everything

You have only been here five years, and yet, it is as if you have always been here.

As if you’ve lived within my heart for years. And truly, I suppose you have.

For as the plan has been laid for me, it is for you. I am yours and you are mine. I am your mother and you are my daughter. Deep within you are the dreams and gifts you will come to know when the time is right, just as I came to meet you on a rainy November afternoon when I was just 29.

“But you’re too young to have a child with Down syndrome,” they said. But oh, I’m all the more lucky. For the earlier I met you, the earlier I met a piece of my heart that I had not known until that day.

Tonight at dinner, we went around the table honoring you. Each child and parent shared what they loved about you, the games they liked to play with you, the things you do that make them smile.

When it came time for your 6-year-old brother to share his thoughts, he coyly smiled and then whispered:

I love you because of everything.

And it’s true. I love you because of everything.

Everything you are, everything you will grow to be, everything you bring to our family. Happy Birthday, my sweet child.

What my daughter gave me on her 5th birthday

Kate is turning five next week.

When she was born, I read that the most important brain growth happens in the first five years. This news gave me a strong sense of urgency. Kate’s 5th birthday seemed to be waving at me in the distance challenging me to do more — to be more. More therapy, more educational activities, more early intervention. What was enough?

Luckily, it quickly occurred to me: she is enough.

She is enough with her bright blue eyes and smile as wide as the sea. She is enough with her love for her siblings and her gentle strokes of my hair. She is enough with her hilarious personality, giant cackle and strong opinions. She is enough — as she is — and my job is to help her be the best her.

I am so grateful to live in an age where there are boundless resources for a family with a child with Down syndrome. The wonderful therapists and experts we have met on this half-decade journey have enriched our lives and provided encouragement. They have taught us techniques and focused our efforts. They have given us tools for developing the brain and the body, all of which I have incredible gratitude for.

But do you know what I’ve realized about these first five years? What grows exponentially faster than the brain is the heart.

But you see, the heart doesn’t measure growth by a checklist — how soon first steps are wobbled or when first sentences are said. No, the heart measures growth in a more subtle way, a stretching of character, a stirring of the soul, a change in life perspective.

And as I’ve celebrated Kate’s accomplishments, scooping her up with joyful tears when she clearly asked for a banana, giving a standing ovation when she toddled her first steps — what I’ve celebrated most is the growth of her heart.

Kate doesn’t sit at the breakfast table until she’s given everyone a good morning hug. Her favorite music sends her into a spin, arms spread wide like a prima ballerina. She tenderly tucks her 1-year-old sister in bed, kissing her forehead and patting her back. She delights in the happiness of people around her and giggles with empathy when someone else gets tickled. She may not be able to do everything all 5-year-olds can do, but oh man, when it comes to the good stuff, she’s ahead of the curve.

And I, like the Grinch, whose heart grew three sizes in just one day, have found myself to have had quite a growth-spurt since Kate was born as well.

It’s the nature of motherhood, of course, to be stretched (physically, emotionally, spiritually), but Kate’s big heart has changed mine. She has given me the gift of perspective.

For in her five years, she has accomplished more than many much older — simply in how well she loves and how effortlessly she inspires others to do the same.

Love lives here

Love lives here,

within these walls smeared with peanut butter fingerprints

and crooked frames.

I tend to this sanctuary, as maker of the home,

baking bread that wafts through the hallways like incense.

I have never been employed in a more important role;

The maker who makes the place

who makes us who we are.

I build this nest while building souls,

two jobs so entwined, they are hard to distinguish.

Love lives here,

Its presence is known — bringing rules to the house

that I hope to impose:

be patient

be kind

keep no record of wrongs

protect

trust

and persevere.

Love lives here.

Under this roof, I am planting roots

that keep us grounded.

And as my children grow and stretch tall to the sky,

they will know what nourishes them.

In a world that asks what will you make of yourself,

There is nothing small in making a home

that makes the peace of the world.

Love lives here.

It always will,

as years fade into another.

As children grow and go on their own,

they will turn by the tree where the wildflowers grow,

For what will be then has always been,

Love lives here.

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The tiptoe hours

There are some wise people

who wake in the dark

and watch the world dawn outside their windows

I am not one of these people.

Most days I greet the morning in the face of a

6-year-old above me

in a room bright for sleepy eyes

by a tap, tap, tap

and a Mama… are you awake…

Then the day takes my hand and pulls me

up, up, up

like a rag doll

Through diaper changing

and the assembly line

of peanut butter toast with honey.

A toddler parked in the curve of my hip

a warm mug cradled in the palm of my hand.

But today —

I sit

like the wise ones.

In a house as still as the country night.

Nobody awake, but myself

and the tick, tick, tick

of the wall clock

and the drip, drip, drip

of the coffee maker

and the faint purring

of an oversized

house cat.

Not even the sun

has peeked her head above covers.

And isn’t it peculiar —

How something as small as rising before the sun

does something a bit magical.

For in these tiptoe hours, I feel

light on my feet.

I am now the conductor

(rather than the caboose).

And I dance around the house

in a hush in no hurry

feeling like a fine hostess

prepared to welcome the dawn.

Oh, hello there, my wonderful friend —

There you are — Come in, come in

I have been waiting for you.

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What really needs to be shared during Down Syndrome Awareness Month

I met her at the grocery store in the paper towel aisle.

She was a typical-looking teenager with long brown hair and square glasses, loose blue jeans and a hip t-shirt — except, many would say she wasn’t that “typical.”

When I saw her, I caught her contagious smile.

It was one of those moments where life flashes before your eyes — though for me it wasn’t backwards, but forward. For there before me next to a package of Bounty was a beautiful girl named Becky. Her eyes were shaped and chromosomes were numbered like my own beautiful 4-year-old. Her joyful banter with a friend had me captivated.

I approached her mom, Donna, in the next aisle over by the laundry detergent with an eager introduction about how I, too, have a daughter with Down syndrome — not really sure what I wanted from the conversation except for connection. She obliged with a kind smile and some warm words and that was that.

Until — three weeks later — while mingling outside after church, I saw the same brown hair and square glasses coming out of the building. Becky! I thought. I ran up to re-introduce myself to her family with my husband and children at my side.

With more time to spare on the Sabbath, we sat together in the courtyard next to an over-sized pot of pansies and talked for over an hour. Becky babysat Kate and the other little ones, herding the 3-year-old away from the fountain, as Donna shared their story.

I learned how Becky is on the swim team for the Special Olympics, how she’s thriving in high school, how she’s reading at grade level. I heard about her hobbies, how they’re training for a 5K together, and how she loves raspberries. Becky — taking a break from wrangling my children — told me about a surgery she had when she was younger, about her best friend, about how she loves to dance. Their everyday stories encouraged me as I sat with a family a step ahead of us.

On the drive home, I realized that what Donna gave me that summer evening was not just great conversation and encouragement — but also, awareness.

I am aware of a lot about having a 4-year-old with Down syndrome as I live it day to day, but spending time with a woman a decade ahead of me opened my heart to the great gifts and possible challenges to come. As any mother of a teenager does when talking to a mom in the tiny-people trenches, she shared her own I miss that and You just wait. 

I was able to look at life through her eyes for a bit, which in turn, changed the way I view my life now. That is the gift of awareness.

It is the same awareness I craved when Kate was born as I searched the web from my hospital bed looking for anyone who could give me hope about having a child with Down syndrome.

It was the same awareness that sat like a warm balm in my postpartum soul when I stumbled upon stories of families who lived joyful, incredible lives not in spite of their child with Down syndrome — but because of them.

It is the same awareness that continues to blow me away whenever I meet teenagers and adults with Down syndrome who are challenging stereotypes, changing minds, and overcoming boundaries unfairly placed.

October is Down Syndrome Awareness Month. A month not just for people who have or know someone with Down syndrome — or for people who don’t — but for all of us. It is a month to do as Donna and many others have done and continue to do for me: to simply share a story.

For a story does what statistics don’t.

It takes facts off of a page and puts them into a family. It takes a diagnosis and puts it into context with real life. It assuages fear by inspiring confidence that we are not alone. As the most commonly diagnosed genetic condition, most people are aware of what Down syndrome is — but not what it means.

As for me, I am still learning what it means fully and I hopefully will keep learning for the rest of my life. Our story is but a half-decade; the story of a young family who was surprised by pure grace (which, ironically, is the meaning of Kate’s full name, Katherine Grace) in the most unexpected of ways. And we still continue to be surprised by the joyful journey that Down syndrome has given us. But Down syndrome is just part of it. A not-so-big part, really. Kate is just one part of this family and Down syndrome is just one part of what makes her who she is.

And maybe that’s the key to Down Syndrome Awareness Month — that a medical diagnosis is just one part of it.

The rest is found in the stories of real, human lives — the interesting, unique, beautiful individuals who have Down syndrome and the families and friends who love them. In hearing those stories, awareness is gained. In building relationships with those families, hearts are opened. And in sharing those stories — time and time again — the world is changed.

What really needs to be shared during Down Syndrome Awareness Month