Down Syndrome Awareness Month

Celebrating Persons of Worth, Part 2

Are you aware of the beauty that enters the world when a baby with Down Syndrome is born?

October is Down Syndrome Awareness Month.

In this series, which Janet and I put together for Bear Paw Creek, we have three goals:

  1. To appreciate the wonderful people in our lives who have Down Syndrome.
  2. To encourage family members who love people who have Down Syndrome. 
  3. To replace society’s fear of Down Syndrome with knowledge about and respect for people who are born with it.

This is part two of that series.

Down Syndrome Awareness

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What determines the worth of a person? 

Is it what a person has accomplished?

Is it how that person makes us feel or what he does for us?

By all of these measures, people born with Down Syndrome are people of worth.

In this second part of our series to celebrate people with Down Syndrome, we asked two moms of children born with Down Syndrome to share their hearts with you.

We don’t ask this lightly, but both Gloria Hsu and Joy Racicot have graciously agreed to give you a glimpse into their hearts and lives.

I knew Gloria Hsu when I was in high school and she was in elementary school. She had a different last name then. 😉 Our parents were friends and I babysat Gloria and her three sisters. They were a fun bunch, good memories! 

Fast forward a three decades… I remember reconnecting with Gloria and her family, then receiving the news that Russel had Down Syndrome. Since then, I’ve seen pictures of this bubbling bright boy and their loving family as he’s grown the last three years. It always gives me joy to see her pictures posted online and I’ll take all the joy I can get!

But joy isn’t all there is, there are tears too.

I want to let Gloria share an excerpt from her journal with you. It’s an exceptional privilege when someone will let you enter into their innermost thoughts like this.

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A “Tiny” Piece of Heaven, by Gloria Hsu

a-tiny-piece-of-heaven

Journal entry August 25, 2016 [Edited by Gloria Hsu]

Today a friend told me that her aunt, who had passed away several years ago, had Down Syndrome. As Trish started to share her aunt’s story, I could feel the strange mix of emotions that so often unexpectedly emerge on this journey with our three-year-old son, Russell, who has Down Syndrome.  Hope, joy, grief, love, mystery, connectedness to God. After her aunt passed away, Trish asked God for a sign that her Aunt Lori was okay. She had a dream in which her aunt was in heaven, and noted that she looked so beautiful. I urgently interrupted to ask the question that immediately came to my mind.  “Did she look like she had Down Syndrome?”  Trish smiled and said, “She looked like her, but she did not have Down Syndrome.”  Tears streamed down my face. I couldn’t be sure why I was crying.  

I cried again sharing the dream with my husband, Clive.  Later, I went into the kitchen and asked God out loud, “Why am I crying?”  My emotions took me back to when Russell was first born and then, at two weeks old, diagnosed with Down Syndrome. The memories came flooding back of me looking down at him and thinking that there was supposed to be another Russell without Down Syndrome, a Russell that I would never know. Tears would stream back then, too; grief and joy constant companions. In Heaven, we will know Russell without Down Syndrome, but he will still be him.  It makes me feel conflicted because Russell with Down Syndrome IS Russell and he is a true gift.  It’s so hard to put into words. Had I thought that Russell would have Down Syndrome in heaven? I hadn’t really processed it yet.

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Down Syndrome on earth is a gift.  It’s extra in a person. It’s a world-changer.  It’s a freedom to just BE.   Heaven doesn’t need people with an extra chromosome.  But Earth does. I remember talking to my dad about orphans with Down Syndrome the summer before Russell was born.  He said that he imagines that we will all get to heaven and discover that we had it all backwards, that those of us without Down Syndrome were actually the ones with special needs. Now that we have Russell, this suspicion is even more confirmed in my mind.  The world needs more Russells – reflections of pure love, of innocence in a world full of striving, anger, hate, hopelessness, and shame. Russell’s Down Syndrome on earth is a gift to us and to the world that isn’t needed in heaven, where there will finally be true innocence, joy, and love, with no more striving.

 

russels-paint-project

In Heaven, Russell will also be free to live to his fullest potential and ability, where here he has limitations. We didn’t know at what age he would take his first steps, or be able to run. We don’t know for sure that he will ever be able to speak clearly, get married, or go to college; yet witnessing the path that he is on now at just three years old, we are sure nothing will stop him! We ALL have limitations. Even our love on earth has limits. But Russell’s love has no limits, no filter, no judgment—it’s pure—and given freely to everyone.  Even when his exuberant waves of hello are so often unreturned, unacknowledged, or unnoticed, he never stops giving those waves freely and lovingly. He is amazing.  I can’t believe that we get him.  [journal entry ends]

 

Down Syndrome Awareness brothers

Many want to get down to the nitty-gritty theology of chromosomal abnormalities, whether God made them or allowed them, and if they are a result of a sinful, broken world. These are hard, natural questions. But only God knows the true and final answers.  He exceedingly responded to our hearts’ cries and our human wrestlings for answers soon after Russell was born.  While we were waiting the ten days to find out if our son had Down Syndrome, the following verse pierced my heart, and I wept as I read it on my balcony that night:  Isaiah 41:20, “so that people may see and know, may consider and understand, that the hand of the Lord has done this, that the Holy One of Israel has created it.”

If you would like to read the story of how God miraculously prepared Gloria and her husband for the birth of their son with Down Syndrome, you can read it at www.lifeisamist.wordpress.com.

 

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Gloria Hsu lives with her husband, Clive, and their 4 boys, on the island of Taiwan, a country of 23,000,000 people, that has one of the highest abortion rates in the world. Almost 100% of babies diagnosed with Down Syndrome in utero are aborted. The year Russell was born, there were only 14 people born with Down Syndrome on the entire island. God prepared the way for Gloria and a friend to open a crisis pregnancy center in the city of Taichung, even before Gloria knew Russell would be her son. You can learn more about their ministry on their Facebook page Pregnancy Support Center-PSC or their website at www.pregnancysupport.tw. Gloria would love to hear from you at [email protected]

 

the-hsu-family-2

 

Meet Deon and Tim.

Take the time watch the videos below so you can meet Deon and Tim and hear them talk about their lives and what they’re excited about. Notice the pride and love which pours from their friends and family when they speak of them these young men. You’ll be inspired and encouraged. These young men aren’t alone. All across the world are men and women with Down Syndrome who are like to learn, work hard, and want to be a part of caring for those around them.

Back to the question of worth.

While people with Down Syndrome are great people and able to contribute to our lives in a way that’s meaningful, I contend their worth doesn’t come from those factors, but from a place more intrinsic.

We need to agree that all people are worth our love regardless of the pain or effort their lives draw out of them and us.

I’d like you to meet another mom who has walked this road with her children and has encouragement to give. Joy Racicot is the second mom whom Janet invited to share regarding Down Syndrome. Our friend Joy wrote a post called In the Image of God and posted it on her blog www.beanpostfarmstead.com. She was excited to let us share the link to her post with you. Her writing is  honest about the fears and struggles, yet she encourages us to understand that the worth of a person comes from their Creator. 

It seems to me that suffering, pain, and sorrow are not the enemy of love and joy. Love and joy shine in the most trying times; they wither in the presence of  fear. That’s why I propose that we all learn to be courageous, realizing that life is hard, but that we and our children can face what’s ahead by God’s grace and by giving each other grace.

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Links to more stories and information about Down Syndrome Awareness Month.

Please join us in celebrating Down Syndrome Awareness Month. Below are more links for information and more inspiring stories. I hope you them and share them with others:

In an age where the media discusses the dangers and merits of designer babies, where does that put people who are born with an extra chromosome? It puts them exactly where they have always been, as precious people of worth in our families and in society. Mothers and fathers, whose babies are diagnosed with Down Syndrome en utero, often feel pressured to abort them and they may be filled with fear for the future (The exact numbers of babies aborted because of a Down Syndrome Diagnoses are unknown, but this article sheds some light on the numbers www.lifeissues.org.)

Down Syndrome Awareness Month is an opportunity for us to remind each other of the potential of each baby born with Down Syndrome and to bring hope and courage to the fight against fear. Let’s not miss the joy that a child can bring into this world or rob them of the chance to live up to their own potential whether or not he or she has Down Syndrome.

Let’s break down fear, and draw back the curtain on how much people with Down Syndrome contribute to our lives and our culture! 

 

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Down Syndrome Awareness Month

Celebrating Persons of Worth: Part 1

Are you aware of the beauty that enters the world when a baby with Down Syndrome is born?

October is Down Syndrome Awareness Month.

In this series, which Janet and I put together for Bear Paw Creek, we have three goals:

  1. To appreciate the wonderful people in our lives who have Down Syndrome.
  2. To encourage family members who love people who have Down Syndrome. 
  3. To replace society’s fear of Down Syndrome with knowledge about and respect for people who are born with it.

This is part one of that series.

 

How do you measure the worth of a person?

Two years ago, I told my friend Jackie O’Connor that my perspective of beauty, and a life well lived, was changing. Jackie then began sharing with me about her Aunt Shirley. As she spoke of her Aunt, who was born with Down Syndrome, tears came into her eyes and her voice was filled with love and affection. Fast forward to last week, as I told Jackie how excited I was to be writing a post for Bear Paw Creek about Down Syndrome Awareness Month. Jackie spoke again to me of her Aunt Shirley, and again, the tears came.

I knew in that moment that I wanted Jackie to write about her Aunt Shirley for this post.

A great way to celebrate Down Syndrome Awareness Month, this October, is by celebrating the people we admire and love who have Down Syndrome.  So you’ll get to read about Jackie’s Aunt Shirley this week. Next week, you’ll get to read about a wonderful boy named Russel. And if you missed Janet’s message about her nephew, Brandon, I’ll be linking to that as well. Lastly I’ll be pointing you to another blog written by our friend Joy, with a message about raising children with Down Syndrome.

Now, I hope you enjoy reading about Jackie’s Aunt Shirley as much as I have.

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Shirley, by Jackie O’Connor

When I remember my Aunt Shirley, I remember her laugh.

When Shirley laughed, everyone around her laughed as well. She seemed to spend her life laughing;I mean real laughing. Eyes scrunched up, can’t catch your breath, belly laughing. You can’t help but laugh along with that.

Shirley went to be with the Lord 12 years ago.  I miss her, but I hold my love for her close.

Remembering her fills my heart. I remember her sweet smile. I remember her silliness in things like how she would encourage me, saying that someday I would be “tall like her”, even after I outgrew her tiny five-foot frame.  She honestly couldn’t see that I was a head taller than her. Remembering Shirley brings a smile to my face and joy to my heart, just like every moment I was blessed to spend with her in this life.

I remember how she was a creature of habit. Once Shirley learned something she did it forever. In school she learned about the dangers of electrical appliances causing fires, so she spent the rest of her life unplugging things. I remember my grandmother, time and time again, trying to use her mixer, or can opener, or even a lamp, only to find that it was unplugged.

I remember how Shirley loved to paint her nails. She wasn’t particularly dexterous, which meant that nail polish became finger polish, but she kept her nails painted, because to her it was pretty, and why else would you paint your nails? She also always wore a watch. She couldn’t tell time, but that didn’t matter.  If you asked her what time it was, she would look at her watch and say “5:30 after 6:00”. She didn’t quite understand time, but it didn’t matter.  We loved to ask her. Not too many times, because that would feel like we were making fun of her; just now and then, so we could smile at how cute she was.

I remember things like Shirley always having gum and how she would use that gum as a way to get us kids to behave. If the gum wasn’t working she would tell us “mama said” or “daddy said” and if all that failed, she would pull out the Bible and “read” (she couldn’t read) where it commanded whatever behavior she was trying to elicit.

I remember how Shirley loved. So purely. She loved the Lord, simply, and without question. She also loved singing with Elvis Presley. Oh, how I long to hear her sing again. She never knew the words, never stayed anywhere near the tune, but she would sing from her heart, and I sure miss hearing it.

Shirley was stubborn and unrelenting, she was joyful and fun, she was innocent, she was beautiful, she was as close to perfect as I’ve ever seen.

Celebrating Down Syndrome Awareness Aunt Shirley

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Jackie O’Connor is one of the most caring and optimistic friends I have. I suspect her Aunt Shirley had something to do with that. Jackie grew up in Napa, California and now lives in Missouri with her husband, children with lots of extended family nearby. She fills her home with love, grace, and beauty.

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Links to more stories and information about Down Syndrome Awareness Month.

In an age where the media discusses the dangers and merits of designer babies, where does that put people who are born with an extra chromosome? It puts them exactly where they have always been, as precious people of worth in our families and in society. Down Syndrome Awareness Month is an opportunity for us to remind each other of that.

Let’s break down fear, and draw back the curtain on how much people with Down Syndrome contribute to our lives and our culture.

 

 

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Down Syndrome Awareness Month: Big Giveaway, 15% Sales Donation

October is National Down Syndrome Awareness Month

 

 

 

In honor and remembrance of my nephew, Brandon Nelson, I have been inspired to support Down Syndrome Awareness Month.

For the month of October, Bear Paw Creek will be running a big giveaway and also donating 15% of sales to a local group, Down Syndrome Group of the Ozarks.

There will also be a two part blog post about Down Syndrome and celebrating worth.

Down Sydrome Awareness Month Big Giveaway, donation of sales to local group

The Year My Parents Added Three More Grandchildren

The year 2002 was a year of booming growth in our family. This is the year that my brother and his wife, my sister and her husband, and my husband and I were expecting new additions.  Since there are only three of us siblings, my parents were being blessed with adding three grandchildren to their growing family tree!

This was our second child, and my brother and sister’s first! Our daughter, Madison, was born first in April, with our nephew Brandon being born in August, and our niece Sammie arriving in October.

I can still remember the day my brother called to tell me that they had found out their little one would have Down Syndrome.  We soon found out that he would also have issues with his heart.  Heart defects and disease is more common in children with Down Syndrome; here this article states that their risk is between 40-60.

So my nephew was scheduled to have a life saving heart operation shortly after birth, and more down the road.  After Brandon was born and before our niece Sammie was born, I was able to head to Wisconsin to visit family with our two oldest children.  My oldest was 4 at the time, and baby was 5 months old.  I am so glad I was able to meet Brandon in person and hold him.  Back then we didn’t have digital cameras, or phones with cameras in them, so I do wish we had more pictures from that trip.  In the bottom left corner, our oldest son is holding Brandon with me assisting.

Nephew Brandon

When I left Wisconsin, my sister was end of pregnancy huge!  I was hoping baby would come early so I could be there, but our niece had her own idea on when she’d arrive. Sammie was born a few weeks after I arrived back home in Missouri.

I sure wish we could have had pictures of the three cousins born in 2002 together, because 2003 brought sad times.  Shortly after marking his five month birthday, Brandon’s little heart couldn’t keep up and he went to be in Heaven.

When I saw a few months ago that October is National Down Syndrome Awareness Month, I thought of Brandon, I thought of our neighbors with George, and another family that has two children with Down Syndrome.  What started out as wanting to give back to the community with another sale donation has grown.

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Big Giveaway, Featured Posts, 15% Sales Donation

For the month of October we will be running a month long giveaway. It’s a big one!  It will include: two connect-a-stretchy bands, balloon ball, bean bags, drawstring bags, and streamers of your choice.  MSRP:  $145.00

Oct 2016 Giveaway, connect-a-stretchy bands, balloong ball, bean bags, drawstring bag, streamers

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We will also be giving 15% of our sales for the month of October to a local group, called Down Syndrome Group of the Ozarks.

Founded in 2006, the DSGO is an organization made up of a committed group of parents, professionals and other interested parties dedicated to creating an extensive network of support for individuals with Down syndrome and those who love and serve them in Southwest Missouri.

It is our goal to become the leading resource of Down syndrome information for new and expectant parents, students, healthcare professionals, educators and all Southwest Missouri citizens.

Our mission is to help individuals with Down syndrome become successful by providing support and education to loving families. We also are striving to bring awareness to early intervention services, promote inclusive education, highlight appropriate medical services, encourage quality employment opportunities and advocate for community awareness and acceptance.

We invite you to explore all that we offer and to join us in advancing the quality of life for individuals with Down syndrome.

 

Down Syndrome Group of the Ozarks

Go sign up for the giveaway, share often, and spread the love!

Janet Stephens is the founder and creator behind Bear Paw Creek’s creative movement props and bags. She is passionate about learning and sharing along the way.
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