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:
- To appreciate the wonderful people in our lives who have Down Syndrome.
- To encourage family members who love people who have Down Syndrome.
- 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.
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.
A “Tiny” Piece of Heaven, by Gloria Hsu
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.
own 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.
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.
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.
[Tweet “Love & joy shine in the most trying times; they wither in the presence of fear.”]
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:
- Straight Talk with Chris Burke: Down Syndrome Awareness Month
- To understand more about Down Syndrome: Home Page for NDSS.org (National Down Syndrome Society).
- For more stories about and by people with Down Syndrome, My Great Story: Virtual Story Book
- Janet’s tribute to her nephew Brandon.
- Jackie’s tribute to her Aunt Shirley
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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