One of the most important things to share during Down Syndrome Awareness Month

I had forgotten about that music box.

The green and white polka-dot one with “Kate” inscribed in a silver plate on the top. When you open it, a tiny ballerina dressed in pink pops up and pirouettes to Beethoven’s, Fur Elise.

The 5-year-old pulled it down from the top of the dresser while he helped put his little sisters to bed last night. “This will calm them down before bed,” he said confidently as big brothers do.

Kate ran over immediately to the music box as he presented it to my curious girls upon the carpet. Her eyes widened, her legs crossed, her hands folded as she waited patiently to see what was inside.

And then, I remembered.

I remembered when we had received that box as a gift shortly after Kate was born.

It was such a beautiful, typical gift for a little girl — but my little girl was not typical. And in those first few days when I didn’t know much about Down syndrome, I held the box in my hand and wondered if she would appreciate it like other girls would.

Would she enjoy the music? The dancing ballerina?

Would she ever want to dress up in tutus one day and pirouette herself? Would she ever cradle the box in her hands and gaze dreamily at the tiny dancer? Or if she weren’t the tutu type, would she have other interests that excite her? Who would she be? What would she do?

And then, last night. There she was.

Upon the beige carpet in her jammies and blonde pigtails with her little sister at her side, enthralled by the tiny dancing beauty. Her grin wide, she told us to hush as she listened to Beethoven’s delicate score with incredible joy. She is as she has always been — just one of the kids — gathered around a treasure.

She patiently took turns holding the box with her sister — gently telling her not to touch the little knickknacks that we had hidden inside. She swayed back and forth and looked at me just to see if I was enjoying it as much as she was.

This moment, like so many moments, is just a reminder that much of the sadness I felt those first days after Kate was born was based on unfounded fears. I grieved the little things that I thought I had lost — when in reality, our family has gained all of that and more.

We still have the tutus and the giggles and the dancing.

We still have the silliness and the sass and the spunk.

But we also have a little something extra. Something that, like a tiny dancer in an ordinary box, brings a special magic to our lives.

I think, perhaps, this is one of the most important things to share with the world during Down Syndrome Awareness Month: the little things. The little stories of relationships and love and joy that become the most important stuff in life.

Enjoy the little things in life, for one day you’ll look back and realize they were the big things.

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How Mothers Can Change the World: 7 Ways From Mother Teresa

“Love begins at home.” – Mother Teresa

For as long as I can remember, I’ve been touched by the words and work of Mother Teresa.

Her advice on loving — on giving — is so very practical, and really, very simple. When I would become overwhelmed watching the evening news, I would be reminded of her words: “‘Never worry about numbers. Help one person at a time and always start with the person nearest you.”

Though she created a worldwide organization that serves millions of people — and won many of the most prestigious awards, including the Nobel Peace Prize — and gave her entire life to serve the poorest of the poor — Mother Teresa reminds us that we don’t have to do as she has done to make an impact on the world. We only must try to love as she has tried to love: as God loves.

What I find so cool about her message is that it doesn’t take great acts to change the world, rather, “small acts with great love.”

This little home, this little family, this little neighborhood: this is where I am called to serve, to love, to find my greatest joy. “What can you do to promote world peace?” says Mother Teresa: “Go home and love your family.”

I have a little book of her quotes upon my bookshelf that I pull down from time to time and I find that many apply so beautifully to the vocation of motherhood specifically. I thought it would be fun to pull some of those together:

Here are 7 ways Mother Teresa encourages mothers to change the world by loving in our own homes.

1. Instill a love for home in your children.

“Try to put in the hearts of your children a love for home. Make them long to be with their families. So much sin could be avoided if our people really loved their homes.”

“Start by making your own home a place where peace, happiness and love abound, through your love for each member of your family and for your neighbor.”

“To parents: It is very important that children learn from their fathers and mothers how to love one another — not in the school, not from the teacher, but from you. It is very important that you share with your children the joy of that smile. There will be misunderstandings; every family has its cross, its suffering. Always be the first to forgive with a smile. Be cheerful, be happy.”

2. Be joyful in all things.

“It is easy to smile at people outside your own home. It is so easy to take care of the people that you don’t know well. It is difficult to be thoughtful and kind and to smile and be loving to your own family in the house day after day, especially when we are tired and in a bad temper or bad mood. We all have these moments and that is the time that Christ comes to us in a distressing disguise.”

“He gives most who gives with joy. If in your work you have difficulties accept them with joy, with a big smile. The best way to show your gratitude to God and people is to accept everything with joy.”

“Let anyone who comes to you go away feeling better and happier. Every one should see goodness in your face, in your eyes, in your smile. Joy shows from the eyes, it appears when we speak and walk. It cannot be kept closed inside us. It reacts outside. Joy is very infectious.”

3. Slow down, enjoy each other.

“Today we see more and more that all the suffering in the world has started from the home. Today we have no time even to look at each other, to talk to each other, to enjoy each other, and still less to be what our children expect from us, what the husband expects from the wife, what the wife expects from the husband. And so more and more we are out of our homes and less and less in touch with each other.”

“Everybody seems to be in such a terrible rush, anxious for greater development and greater riches and so on. There is much suffering because there is very little love in homes and in family life. We have no time for our children, we have no time for each other, there is no time to enjoy each other. In the home begins the disruption of the peace of the world.”

“I want you to find the poor here, right in your own home first. Be that good news to your own people first. Very often we are all smiles outside, but we are all sad inside and when we come home we have no time to smile.”

4. Pray simply, pray together.

“You can pray while you work. Work doesn’t stop prayer and prayer doesn’t stop work. It requires only that small raising of the mind to Him: I love you God, I trust you, I believe in you, I need you now. Small things like that. They are wonderful prayers.”

“How do we begin that love, that peace and hope? The family that prays together stays together; and if we stay together, naturally we will love one another and want each other. I feel today we need to bring prayer back. Teach your children to pray and pray with them.”

“I remember my mother, my father and the rest of us praying together each evening. It is God’s greatest gift to the family. It maintains family unity. So go back to family prayer and teach your children to pray and pray with them. Through prayer you will find out what God wants you to do.”

5. Teach children to love others by how you love each other.

“I think we should teach our children to love one another at home. They can learn this only from their father and mother, when they see the parents’ love for each other.”

“People who love each other fully and truly are the happiest people in the world. They may have little, they may have nothing, but they are happy people. Everything depends on how we love one another.”

“How do we love? Not in big things, but in small things with great love. There is so much love in us all. We must not be afraid to show our love.”

6. See the best in your family — accept each other for who you are.

“Let us be very sincere in our dealings with each other, and have the courage to accept each other as we are. Do not be surprised or become preoccupied at each other’s failures — rather, see and find in each other the good.”

“Once you know you have hurt someone, be the first to say sorry. We cannot forgive unless we know that we need forgiveness, and forgiveness is the beginning of love.”

“The most natural thing is the family life. What keeps the family together, what nourishes the life of the family together, is that surrender to each other; is that obedience, is that accepting of each other.”

7. Do not worry.

“In the face of all difficulties, doubts and objections, trust in Him, He will not let you down. If God does not grant the means, that shows He does not want you to do that particular work. If He wants it done, He will give you the means. Therefore do not worry.”

“The future is not in our hands. We have no power over it. We can act only today. We have a sentence in our Constitution that says: ‘We will allow the good God to make plans for the future — for yesterday has gone, tomorrow has not yet come and we have only today to make Him known, loved and served.’ So we do not worry about it.”

“Yesterday is gone. Tomorrow is yet to come. We have only today. If we help our children to be what they should be today, they will have the necessary courage to face life with greater love.”

 

How Mothers Can Change the World: 7 Ways From Mother Teresa

How Mothers Can Change the World: 7 Ways From Mother Teresa

“Keep the joy of loving Jesus in your heart. And share this joy with all you meet — especially your family.” Mother Teresa

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.” 

DSC_1078CBBW2 Carissa and Jack

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