Thoughts About Down Syndrome… or Encountering God Through Zoe

My wife Karen and I were recently asked to share some thoughts with our church about how we have encountered God recently. We decided to approach it through the life-changing experience of raising a girl with Down syndrome. I’ve included video from of our talk, plus the written version which contains a few more details. We give this in hopes to encourage other families who may be just beginning down this path. We’re eight years in at this point and it’s been a pretty good ride overall, but it certainly hasn’t been without its trials, doubts, and fears…

Oh, and the photo above is of Zoe, me, and a little too much of my leg… sorry about that!


 

KENT: Good morning! I’m Kent Williamson and this is my wife Karen and we are going to share our Encounter with God through the life of our daughter Zoe.

KAREN: We love to talk about Zoe! But Zoe is not a short term experience or even a season of life. Just in her being, she represents a change from one path to another, from one destination to a very different one than we had planned. But we can certainly testify to God’s goodness and grace through what was a major life adjustment and transition.

Zoe is our sixth child and she was born with Down syndrome. We weren’t actually expecting to have a sixth child. If you’ve seen our family together, you might have noticed a rather large gap between Zoe and the other five. So that part was a surprise—the week of my 40th birthday, I might add. And we didn’t learn about her Down syndrome until she was born, so that was yet another surprise.

KENT: I will never forget, looking into her eyes for the very first time, thinking I’ve “seen those eyes  before” and then I realize, “Oh my gosh, my little girl has Down syndrome”…. That moment felt like someone had swung a baseball bat as hard as they could square across my chest.  I’ve never felt so very alone as in those first few minutes of Zoe’s life when I knew about the Down syndrome, but Karen didn’t know yet.

KAREN: And nothing prepares you for that moment. Nothing prepares you for the time when you were expecting one thing in life, and are then handed something completely different. I’m not sure I can describe in words how it feels when that “thing” is handed to you by a stranger, wrapped up in a receiving blanket. It could have been the scene at an ordinary restaurant when I might have said, Oh no, I’m sorry, this is not what I ordered. Please take this back, and bring me what I ordered. But we all know, life doesn’t work that way, does it?

KENT: We had five other kids who were anxious to meet their new little sister. So what do you do? For the kids sake, do you just ignore the Down syndrome diagnosis and pretend it doesn’t exist? We’ve never been that kind of family, so instead we sat them all down on the end of the bed in that hospital room at the old Martha Jefferson and I told them, as best I could, about Zoe’s 21st chromosome.  What I thought I was doing was explaining that Zoe has Down syndrome. What I didn’t realize at the time was that I was really explaining that our family has Down syndrome.

KAREN: I regret to say now that those first days and weeks were for me full of sadness and anguish. And I wish I could say that it was only a short time before things turned brighter in my heart. In reality, it was a couple years before these unexpected circumstances felt kindof normal. And in that time, I did an awful lot of soul-searching, trying to understand my grief, and understand God in the midst of it. I had to ask the hard questions of myself like, Why is this so hard for me? What are my beliefs about what my family should look like, and what are those actually based on? And down deep below the surface, I was discovering a lot of pride and misplaced values. I was seeing in myself a flawed view of myself and the world around me. I was taking pride in things that I had no part in making a reality, and I had been placing merit and value on things that were superficial and temporal.

I read a quote recently by Charles Spurgeon that hits right on my guilt. “Be not proud of race, face, place, or grace.” In some rather subtle ways, I had been valuing things like status, intellect, appearance, correct behavior. But now alongside my grief, I had this child who I was falling in love with. I was beginning to embrace a child who wouldn’t be able to meet these expectations. So something in me would need to change in order to make a place for Zoe in my heart.

I am here to tell you, God did do a work in my heart. It was incredibly painful in the beginning, and humbling. But somewhere along the way, when your values and standards shift, you find beauty in things that once were not beautiful. And joy in things that once were not joyful. Even in the earliest days after Zoe’s birth, I was filled with an enormous measure of grace for almost everyone I encountered. I was nearly overcome with the realization that we are all given a place in this life, a color, status, genetic makeup, even a faith, that has nothing to do with our own will or determination. All we can do is build on what we’ve been given. That realization invoked in me a care about people I would previously have overlooked.

KENT: It didn’t take long for me to bond with Zoe. She makes me smile, laugh. and cry… just like my kids without Down syndrome. Kids with Down syndrome will skin their knees. pinch their fingers, bump their heads. They will also learn to climb stairs one big step at a time, ride their bike with training wheels, and love to jump on trampolines. And Zoe loves to read. As a matter of fact she just finished first grade as one of the top readers in her class. And they will steal your heart and never give it back.

KAREN: So I was given this child. She was a gift I didn’t know I needed. She was a gift I didn’t easily receive. But the gift has never been the problem—my own fears, uncertainties, and misplaced values were the problem. It turns out that Zoe has been a blessing beyond our wildest imaginings. There are still hard places, and challenges, and sometimes we grieve about various things. But I think I can honestly say we never grieve over what Zoe is not, or what she is lacking.

KENT: My little girl doesn’t care that she has Down syndrome. She just wants to be loved like the rest of us. Our family has Down syndrome and that diagnosis is okay with me. I’ve realized over the last 8 years that I am a better person with Down syndrome than I was without. It has made me more compassionate; more accepting of others; more in love with people and all their complex issues. I am a better man with Zoe in my life. God has given me such a wonderful gift—a gift that in my ignorance I would have rejected if I could have.

KAREN: So what have I learned, what do I value now? I value laughter, because Zoe is hilarious and constantly makes us laugh. I value music, because every since she first found her voice, the first sound I hear from her room in the morning is her singing. I value innocence and purity, because though I know she has a sinful nature, she really is not naughty or mischievous, she is kind and generous. I value authenticity, because Zoe is completely who she is without pretense or concern for image. I value connectedness in relationship, because these kids, our other five kids, have the most beautiful relationships with Zoe I have ever seen among siblings.

To quote another mom who’s further along the journey with Down syndrome, “Can she live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”

KENT: “Zoe” means “life” in Greek—both physical and spiritual. It was the name Karen and I decided on before she was born. And as we see her as the gift of God she is, her name couldn’t be more fitting.

Film Review: Unbroken — 4 stars

ONE WORD REVIEW: Powerful!

 

SUMMARY: A U.S. Olympic athlete turned WWII Airman survives a plane crash, 45 days on the open sea, and the remainder of the war in a Japanese prison camp… all the while remaining unbroken.

DETAILS: Based on the true life experiences of Louis Zamperini, Unbroken tells the story of a U.S. Olympic athlete turned WWII Airman (Jack O’Connell) who survives a plane crash in the ocean, 45 days on the open seas, and the remainder of the war in a Japanese prison camp. Zamperini continually hears his brothers words of encouragement though all of his trials, beatings, and torturous experiences. In the end he remains unbroken and eventually chooses to forgive his enemies. This screenplay, written by Joel & Ethen Coen (and others) contains several scenes that portray strong themes of faith and redemption, including a “crucifixion” scene, and a beautiful baptism scene where Louis and all the prisoners ultimately receive their redemption. Directed by Angelina Jolie, the story doesn’t cover the entire novel by the same name, but certainly is an inspiring telling of Zamperini’s early life.

 

SCORE: 4.0 out of 5 stars

RELEASE: 2014
RATING: PG-13

Rebellion of Thought — 4 out of 5 stars

ONE WORD REVIEW: Mine

SUMMARY: Two stories woven together… Post-Modernism explored and my personal journey away from the traditional church.

DETAILS: I haven’t watched this film in a few years and I realized that I come across as rather egotistical…. imagine that happening when someone puts themself into their own film!

SCORE: 4 out of 5
RELEASE: 2007

RATING: NR
DOCUMENTARY

Stained Glass Rainbows — 4.75 out of 5 stars

ORIGINAL POST: 13 MAY 2014
FINALLY! After nearly 7 years of working on this film I was able to watch the first assembly of the entire project… all 3 hours and 20 minutes. Now I need to cut it down to 90 minutes or less, add b-roll, music, clean up the audio, etc. etc. It was a great feeling to watch the final credits roll as Brian Healy of Dead Artist Syndrome sang “Angeline”. Wow… what a long time coming!
SCORE: 3.5 out of 5

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UPDATE: 20 JULY 2014

I was able to sit and watch the 1:46 version of SGR (v3) with Karen. It was great to watch it at this length and in a single sitting. Still too long, but heading in the right direction.
SCORE: 4 out of 5
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UPDATE: 22 JULY 2014
We had a private screening of this work-in-progress version (v3.1) of the film at the Paladin studio. It was very well received by the small gathering of friends. Chris & Missy Martin, Heather & Hambo Myers, Pete Kulenek, Will Musser, Dan Fellows, Whitney Henderson, my Mom, Karen, Chase, and I watched it. It’s great to get some encouraging feedback at this point. The disappointing part of it was I had sent out 26 invitations, mainly to pastors and NOT 1 pastor showed up to watch the film. Sigh…
SCORE 4 out of 5
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UPDATE: 9 AUG 2014
I watched my film again with the Klint family during the middle of the day. Remind me never to do this again. Constant interruptions from kids, distractions, etc. I’ve only had a couple of follow up conversations and people seemed to like it, but boy was it rough getting through it. Meanwhile, James Burgess is editing on the film right now and we’ll hopefully have a good cut of it in the next few weeks.
SCORE 4 out of 5
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UPDATE: 13 AUG 2014
Brad hosted a small screening of the film with Fred Jolly, John Moline, and Beck. There was some good conversation that followed, but unfortunately I had to step out early to do a radio interview with Keith Giles about the film for his blogtalk show Subversive Radio. Brad had some good ideas for trying to push each end of the spectrum toward dialogue about this topic.
SCORE: 4 out of 5
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UPDATE: 1 OCT 2014
Much tighter, but still dragged 3/4 the way through… more tightening to do. (the next day, James Burgess and I went through the entire film shot by shot and removed 6 minutes of footage… new running time 85 minutes).
SCORE: 4.5 out of 5
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UPDATE: 9 AUG 2014
The Film is done! Even tighter & better!
SCORE: 4.75 out of 5

RELEASE: 2015
RATING: NR
DOCUMENTARY

God’s Not Dead — 1 out of 5 stars

ONE WORD REVIEW: Ugh…
SUMMARY: Another “Christian Film” to help Christians feel better about being Christians 
DETAILS: Ugh… I don’t even know where to start. How many unconnected characters can we jam into one movie? Lots. Will everyone come to Jesus? Of course! Can we kill off our main antagonist? Yes, but not before he accepts Jesus as his Savior. Can we turn “witnessing to our friends” (via text message) into blatant self-promotion of the film? Yes! Can we tack on Christian Celebrity in a totally meaningless fashion that is in no-way connected to the storyline? Absolutely. I would like to continue this rant, but I feel the need to go vomit! It’s film’s like this that make me never want to be connected to the Christian Film Industry and why I refer to myself as a follower of Christ who happens to be a filmmaker and not a “Christian Filmmaker”.

SCORE: 1 Star out of 5

RELEASE: 2014
RATING: PG