Down Syndrome Awareness Month: Why It Should Matter to Everyone

October is Down Syndrome Awareness Month!

When I first learned about this month (after Kate was born), I didn’t think too much of it. After all, most people are “aware” that there are people born with Down syndrome. Most know the physical characteristics commonly associated with people with Down syndrome. It’s the most common chromosome abnormality in humans, after all.

But very quickly, I realized that’s where the awareness ended. Even for some doctors. For “medical websites.” For some people who work in the special needs community.

Knowing something exists is far different from having a true understanding. It’s like seeing pictures of the Eiffel Tower vs. taking pictures from the top. Like watching a romantic comedy vs. falling in love. Like walking into a Babies R’ Us vs. holding a sleeping newborn.

There are all sorts of smart sources out there with updated, educational information about Down syndrome—and I’m so thankful that Kate is living in a time of limitless possibilities for those of all abilities. But we still have so far to go.

Because we also live in a time where the majority of mothers who receive a Down syndrome diagnosis choose to terminate their pregnancies. And no matter what your thoughts are on this incredibly sensitive subject, why is it that this is the best time to live with a disability after birth, but the worst time to have one in utero?

I chalk it up to fear. And I have great compassion for that fear. I held my newborn daughter with that same fear when she was diagnosed at birth. We fear what we don’t understand.

That’s why we need more than just facts—we need faces. We need to meet them, get to know them, understand them. Hug them, talk to them, laugh with them. We need to be more than just aware of Down syndrome, we need to understand those who have Down syndrome.

Why should Down Syndrome Awareness month matter to everyone? Because we all have differences that others might be afraid of. And working toward the inclusion and acceptance of those with disabilities means inclusion and acceptance for all of us.

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Why the little things matter most

It’s literally raining leaves outside my livingroom window. With even the most gentle breeze, another group blows down from the tall oak with the small orange leaves that towers over our back patio.

In the warm morning light, they flicker like orange specs of fairy dust, floating almost weightlessly back and forth until they meet their fate with a soft landing upon the lawn.

Yesterday, Starbucks reminded me that Fall is here with a poster hung in the driveway exclaiming that the Pumpkin Spice Latte is back. So later that day at the grocery store, I filled my trunk with a big white pumpkin and a couple of little orange ones — and some red and orange mums for the front porch.

I’m planning to scour the candle box in the office closet later today [I love that there is a candle box in the closet: it smells like Hobby Lobby in October every time I go in there] for orange and red candles to nestle within the cozy lap of the autumn wreath on my diningroom table.

This morning, my boy painted a bird on a white paper plate to add to our Fall decor. He abandoned the paintbrush for his fingertips, swirling reds and oranges and yellows together, staining the bird’s feathers with the most beautiful sunset of watercolors.

Last night we made butternut squash soup. Today we ate popcorn on the back porch.

These are my favorite things in life.

They aren’t the things put on the cover of Time magazine or the ones that go down in the history books as what made the world. But they are the things that make our world, the little stitches that weave our family tapestry.

The little things in life can seem frivolous or unimportant sometimes, but it is in doing these little things with great love for my family that I think I do my most important work. My hope is that I can instill a sense of gratitude in my children for life’s little gifts:

The changing of a season, the color of leaves, the taste of seasonal vegetables, the decoration of a table, the planting of flowers, but mostly:

Just being together.

I have found that when I am grateful for the smallest things, I am grateful for everything — that I need less, that I focus more, that I am most joyful.

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There’s no good way to deliver a Down syndrome diagnosis?

And before long, a tall, abrupt, middle-aged doctor came into the room. Our nurse accompanied him. He greeted us, told us his name and title – and then, as quickly as he said hello, he continued, “There’s no good way to say this, so I’m just going to say it. Your daughter has Down syndrome.” – Excerpt from Kate’s birth story

I’ve thought of the neonatologist’s words many times since he delivered Kate’s diagnosis to us. There’s no good way to say this. Is that true? Is there no good way to tell someone that their child has Down syndrome? I think part of that sentence is true, but only if you add one word:

There’s no ONE good way to tell someone their child has Down syndrome.

In fact, I’d say there are many good ways.

Ways that are filled with updated facts, incredible resources and compassion. Ways that meet the family where they are, that make them feel encouraged and hopeful. Delivered well, a family may still feel sad, they may still feel grief — but they will also feel love.

I received a lovely note from a mom named Carissa yesterday who shared how she was told her son, Jack, has Down syndrome — how it was delivered poorly and what she’s doing to make it better for others. She was asked to come back to the hospital where Jack was delivered and suggest a better way to share the news.

Carissa shares about talking to the hospital staff:

I asked them if they would consider creating the environment that made families reflect on their time in the hospital and say, “Wow, they knew something before we did. That our child would change our lives for the better.” I asked them to go outside their comfort level and love on these families who may be fragile, in shock, fearful, and filled with tears. Help them see what they will soon come to see when they fall in love with their child. When their baby steals their heart, smiles, coos, and they come to realize they have been given one of life’s best gifts. I promise you, the family will never forget your response.

You have the influence of starting this beautiful journey with a positive message, their child is to be celebrated like any other child. I encouraged them that if they didn’t feel comfortable with what to say to the parents, go over to the baby and say something to the baby: “You are precious.” 

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I also love what Carissa says about the moment she’ll never forget when Jack was born:
A nurse came in and said, “Look at your beautiful baby!” That moment CHANGED MY LIFE. Her comment helped me believe, that yes, he is a beautiful baby. She helped me remember what I prayed for each day of my pregnancy, a fearfully and wonderfully made child. Jack, you are an answer to prayer, my beautiful baby. I will never forget that day when she came in and doted over our son.
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Carissa also did something else that is so incredibly thoughtful.

She created “Jack’s baskets” — a gift for the hospital staff to give to another family who has given birth to a child with Down syndrome. Carissa wrote a personal note, handpicked a few special items — and her friends even made homemade blankets to welcome a new precious baby with Down syndrome into this world. Then she took them to the hospital where she delivered Jack to pass along to someone else.

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Carissa said about the baskets:
The baskets contain the following items: a personalized letter and picture from our family and two others that are raising their children with Ds, Jack’s favorite rattle, a couple toys from our PT (she wanted to donate a few toys after she heard of the idea… love her), and an adorable onesie for the new baby. I know that the family might not be ready to accept this gift at first, but to hear the news, “CONGRATULATIONS,” will be something they reflect on and are thankful for when their child steals their heart. To get this gift and read of families thriving with children with Down syndrome, I am hopeful this will be the first of many of the unexpected blessings that their child will bring them.  
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Carissa recently heard from a family that received one of Jack’s baskets — they said it meant the world to them. The family also said it was the only congratulations they received while they were in the hospital.

When Kate was born, the neonatologist told me that there is no good way to share the news that a child has Down syndrome — but, as Carissa said to the medical staff with whom she spoke: “There is a better way.”

A way of compassion. A way of love. A way of hope. A way of truth that says: Your baby is a miracle.

Congratulations.

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Read more of Carissa’s beautiful journey here.

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Some other good resources on how to deliver a Down syndrome diagnosis:

An Open Letter To Every OB/GYN On The Planet: How To Deliver A Down Syndrome Diagnosis, The Right Way by Noah’s Dad

New guidelines for physicians: How to give a diagnosis of Down syndrome by Dr. Brian Skotko 

What I’m giving to myself on my 33rd birthday

This month is my 33rd birthday.

When I first wrote that sentence, I actually wrote: This month is my 34th birthday.

Then I paused — wait — will I be 34? Or is it 33? [Longer pause. Furrowed brow. Thinking, thinking.] OK, I’ll be 33.

That in itself is an example of how I feel about this coming birthday: it is an aside. Half the time, I don’t even know how old I am. Or where my car keys are. Or my brain. I blame it on being the mother of 4 beautiful children under 5 — the ones who I spend hours daydreaming up party ideas for. But for my own birthday? I’d rather not fuss about it (though a little sleep-in might be nice.)

But at heart, I am truly a ceremonial type — a traditionalist who loves things like birthdays and New Year’s and baby books and all the sorts of things that give me a chance to sit back, reflect, set goals and give thanks. So this birthday, I shall do that once more. And as I give thanks:

I will give myself time.

Time to learn, to pray, to be quiet.

I will give myself these moments by giving away other things: opportunities, activities, or events that keep us too busy. I’m giving myself time to be alone sometimes, so that in my time with others I can be fully present.

I’m giving myself time to stretch, to sweat, to strengthen.

Time to grow, time to reach goals — without unnecessary hurry. I am setting my clock with a bigger clock: praying to understand the timetable that is meant for me. So that I am not impatient or anxious or overly-eager, but with patient trust, I am at peace being imperfect and a work in progress.

I am giving myself enough time so that I always have time to stop and smell a rose or a daisy or a stem of rosemary — to chat with a neighbor, to invite them in for a cup of coffee or some fresh-baked pound cake.

I am giving myself time so that my best time can be given to the people who God gave me time for.

I will give myself permission.

Permission to do things a little differently. To live life as an adventure.

In the past 10 years, I have gone from a city girl to a country-dweller.

I went from being an only child to a homeschooling mother of 4.

From living alone with a pet cat — to loving this house of many (and dreaming of a pet cow).

From writing about products for advertising agencies to writing about purpose and Down syndrome and motherhood.

This wild, wonderful life isn’t what I expected — but it’s better than what I could have imagined. And I am giving myself permission to live, to love, to fail, to be vulnerable, and to pursue all that I’m meant to do.

I will give myself a reminder.

A reminder that every day we live — and that every breath we breathe — is a gift.

That my children learn from watching me.

That the days are long but the years are short — and all those other truths that have become cliches because we say them so often. (But we say them so often, because they are so easy to forget.)

I am reminding myself that this month I am 33, but someday (God willing), I will be 93. And what will I care about on a sunny September afternoon that year? What will I look back on and wish I had done, said, or focused on?

The answer to that question, I think, will help remind me of what matters most.

 

Oh — and also, I will give myself chocolate.

 

“There are two great days in a person’s life – the day we are born and the day we discover why.” – William Barclay

What I'm giving to myself on my 33rd birthday

What my children want most from me

I recently read an article about what makes a “nightmare” sports parent — and what makes a great one.

The article says:

Hundreds of college athletes were asked to think back: “What is your worst memory from playing youth and high school sports?”

Their overwhelming response: “The ride home from games with my parents.”

The informal survey lasted three decades, initiated by two former longtime coaches who over time became staunch advocates for the player, for the adolescent, for the child.

Those same college athletes were asked what their parents said that made them feel great, that amplified their joy during and after a ballgame.

Their overwhelming response: “I love to watch you play.”

The phrase stuck with me.

I love to watch you play.

So simple — so satisfying.

In a world of so many distractions — where glowing, hand-held rectangles too often compete with little glowing eyes, I remember what my children need most: me being present. Not just at sports games — but in life.

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I love to watch you play. Watch you read. Watch you learn. Watch you grow.

I love to watch you.

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I think of this often. Reminding myself: watching is not just mindless looking. It’s not just an appeasing glance or a pacifying head nod.

It is careful attention.

Taking it all in.

It is connection.

Being present is a present — a gift that tells my children: you are of the utmost importance.

We started kindergarten homeschool with my boy last month — and it has been a good exercise for me in the habit of being present.

Our weeks have more structure, more “focus” time, and though still full of whimsy, wonder, play — I have found that the intentionality of the days have helped me to be more watchful. (And with a better schedule, I can focus on chores or projects at set times, so I don’t always feel like I’m only half-present with everything.)

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We are doing our best to have slow days (which is not always easy with 4 little ones and the activities that ensue). But the slower the pace of life, the easier it is to watch, so we are simplifying. Trying to, at least.

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Doing our best to soak it all up.

To be careful observers of the world.

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And each other.

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My boy wasn’t doing sports today — but out of nowhere, while he was lost in the kind of play that only childhood offers, I thought of what those athletes said. And I took a moment to tell him, “I love to watch you play.”

His smile was a gift to both of us.

“Everybody today seems to be in such a terrible rush, anxious for greater developments and greater riches and so on, so that children have very little time for their parents. Parents have very little time for each other, and in the home begins the disruption of peace of the world.” – Mother Teresa