Category: Life Article

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.

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My First Day On The Set… Bozo The Clown

The first time I ever set foot in a television studio was when I was a young boy. A friend had a birthday and a portion of the party was to watch the taping of the local Bozo the Clown Show. In the early 70’s in El Paso, Texas, a local weatherman named Howell Eurich would dress up as Bozo and entertain the kids each week. The Channel Four Studios of KDBC-TV (formerly KROD) had a colorful and fun set where the filming occurred and although I don’t remember the content of the show I do remember being mesmerized by the cameras and lights and showmanship of it all.

I never knew, while I sat in the bleachers laughing with my friends as part of the studio audience, that my life was being shaped, but obviously it was. I’ve been in love with production for as long as I can remember… perhaps it has something to do with capturing and immortalizing a moment… perhaps it has to do with entertaining, educating, and enlightening… whatever it is it all started for me with a weatherman who would dress up in a clown’s outfit in order to entertain the kids.

I learned much later in my life that different television markets had their own version of Bozo the Clown. Apparently a TV Station could license the show and they would receive the clown outfit, wig, nose, shoes, and scripts. All they would need to do was provide the talent, lights, cameras & action.

I also learned some of the tragic events that would play out in the life of El Paso’s clown and weatherman, Howell Eurich. Apparently he fell in love with the stations weather-woman Gail Gordon (even though they were both married to other people at the time). Their affair blossomed on-screen, which they say was good for ratings. Together Gail and Howell adopted a platinum blonde Lasha Apso that became a TV star herself.

Puffy Little Cloud
Puffy Little Cloud

Named Puffy Little Cloud, the dog would appear with Howell and Gail on-air for the weather segment. Puffy had over 650 hats and 360 outfits in her collection, many of which were hand-sewn by adoring viewers. She would show up in a raincoat on the rare days when rain was in El Paso’s forecast and with sunglasses when hot weather was due. Some say Puffy would receive 50 letters a day from fans all over.

Howell Eurich & Gail Gordon (upper left)
Howell Eurich & Gail Gordon (upper left)

Puffy was the brides-maid when Howell and Gail were married, but not everything would work out the way they hoped. After five years together, the love affair that had blossomed in the television studio had run it’s course. Howell was broken-hearted and Gail was moving on. On Wednesday, November 3rd overnight clouds gave way to clear morning skies. By 10AM scattered clouds would dot the sky but the temperature would only rise to 57 degrees. That day Howell dropped Puffy off at a friends house and then went to the station to record one last commercial. Afterwards he drove home, parked his car inside the garage, and left the engine running. By mid-afternoon the clouds would vanish and the skies would clear, but the cloud of carbon monoxide in the garage would do its job. It was November of 1982 when Howell Eurich took his own life.

When I walked onto the set of “Bozo’s Big Top” as a child I didn’t know how significant a moment it would be for me. In 1982 when I heard that the local weatherman had killed himself I didn’t think much of it… I don’t believe I even knew that it was the weatherman who had played the role of Bozo all those years earlier. It wasn’t until 2012 or so that I started thinking about that day on the set so long ago that I began researching it and learned the story of Howell’s fate.

I wish I could send a note of thanks to Howell, or better yet, to meet him and to shake his hand and say “thank you”—not only entertaining us children by dressing up as a clown, but for unknowingly igniting a spark deep inside of a little blond-haired boy who would grow up to have a career in the film & video world. I guess I’ll just have to say it here… “Thanks, Howell… thank you very much!”

This autobiographical post is part of my series of short articles called “Events That Shaped A Life”. Keep your eye out for more posts from this series.

SOURCES: Weather details for Nov 3, 1982: Weather Underground. Other details: Tales From the Morgue, Genealogy Trails, Texas Monthly – October 1979 pg. 117, EPVMA Animal Hall of Fame.

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Life Involvement List

Do the groups, companies, and organizations you align yourself with help tell your story? Of course they do! They not only show your areas of interest, but they also show a part of your heart, your passion, and commitment to the broader community around you. Everything from the boards you serve on to the Facebook groups you create to the blogs you write all make up the stories that ARE you!

The more projects, articles, boards, and groups that you are involved in the busier you become and the harder it can be to keep up and keep track with each of these ventures. Busy people often serve on multiple boards simultaneously—while they run their companies—and yet they still often take time to teach or mentor as opportunities present themselves. The older I get the more I see the truth in this quote attributed to Benjamin Franklin…

“If you want something done, ask a busy person.”

Us busy folks are pretty good at juggling multiple projects simultaneously and hopefully, in the midst of it all (at least the really good ones I’ve seen) set time aside as a priority for their spouse and children. For the record, let me say that being busy at the expense of your family or those that love and care about you is extremely foolish. Simply put, don’t make your family pay for your busy-ness. If you can’t keep your family as a priority you probably shouldn’t accept that board invitation or start that project that will only pull you away more. (FULL DISCLOSURE TIME: I have six kids and no matter how much time I spend with them it never seems like enough. I just realized that while I’ve been writing this article two of them left the room I’m in and I didn’t even look up from the screen…ugh.)

Recently I decided that it would be pretty handy for me to have a collection of links to the companies, non-profits, organizations, Facebook groups and pages, etc., in which I’m actively involved. I’m calling it my Life Involvement List. It’s a place for me to easily access each of the things I’m committed to when needed, but it also serves to help paint a picture of who I am as a filmmaker, a business-owner, a writer, an artist, and a member of my local community. When I look at the list as a whole it helps me gain a better perspective on myself and it also can help me see some of my own strengths and weaknesses and even potential areas I should focus on.

A Life Involvement List should become a living, breathing document. As organizations and interests come and go I can add or remove items as needed. One thing that I noticed as I assembled my own list was that a couple of Facebook groups I had created a few years back (connected to my faith) were stagnant and stale and honestly needed to be deleted. So not only did I not include them on my list, but I also went ahead and shut down the Facebook groups. The act of NOT including these made me realize they may leave a hole in my story that should be filled by other similar involvement.

I’m confident you could benefit from performing this little exercise, too, so allow me to encourage you to create your own Life Involvement List of all the boards, companies, groups, classes, and activities in which you participate. Do it for two reasons. First and foremost, to give you a better perspective on yourself. And secondly, for you (and others if you share your list) to have easy access to the websites and links you include. It’s a handy exercise that has some practical value and may help lead you to make different decisions in the future.

It’s called a Life Involvement List because each item on the list represents an important decision you’ve made that helped shape your life into what it is today. But it’s also called a Life Involvement List, because if you look at your list and see things that are not helping you create a rich, deep, and meaningful existence, then perhaps you should consider deleting them… not just from the list, but from your life. We only get so many trips around the sun. Life is far too short not to make the most of it.

So, go do it! Create your Life Involvement List. If you need a little inspiration, you can read my list below and learn a little about me and the things that I’m involved with. Oh, and one more thing… what am I missing? If you think of areas of life that should be included in our lists, please let me know. Thanks!

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Kent’s Life Involvement List…

COMPANIES I’VE CREATED OR HELPED FOUND:

MY FILMS:

  • Stained Glass Rainbows – documentary about gays and the Church and the conflict therein
  • By War & By God – documentary about veterans who return to Vietnam with a very different mission
  • Rebellion of Thought – documentary about post-modernism, the church, and the struggle for authentic faith
  • When Love Walks In – dramatic film about loss and finding love again

MY BLOG:

  • Monastic Inkwell – film and life articles – thoughts from a film director

THE NON-PROFIT I FOUNDED:

BOARDS I SERVE ON:

  • Paladin Pictures, Inc (aka Paladin Media Group) – since 1991
  • Community Films Foundation – since 2009
  • Vets With A Mission – since 2005
  • Transformation Counseling – since 2006 – private counseling practice
  • Charlottesville Tom Sox – since 2015 – valley league baseball team

PROGRAMS I’M PROUD TO HAVE STARTED:

  • Paladin Fellows Program – 2015 – A special program designed to help certain Paladin Fellows learn the “why” of filmmaking.

NETWORKING FACEBOOK GROUPS I CREATED OR HELPED LAUNCH :

  • Cville Filmmakers Group – connecting Charlottesville filmmakers
  • Paladin Alumni and Intern Network (aka PAIN) – a private group for employees, interns, and alumni
  • Creative Potluck — Private Creative Industry Network – connecting creatives in central Virginia
  • Stained Glass Rainbows Pledge Group – private group for people who have taken the Stained Glass Rainbows pledge that appears in the study guide for the film
  • The Face of Down Syndrome – connecting friends whose families are blessed with Down Syndrome
  • Community Organizing Group – private group for my neighborhood

FACEBOOK PAGES FOR MY FILMS:

FACEBOOK GROUPS FOR MY FILMS:

FACEBOOK PAGES FOR MY COMPANIES & NON-PROFIT

FACEBOOK PAGE I CREATED JUST FOR FUN:

  • Graffiti Town – a place to view and post images of graffiti from around the globe

FACEBOOK PAGE I HELP EDIT:

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Six Things I’ve Learned About Down Syndrome

6 years ago today my 6th child was born. 6 years ago today I learned that she has Down syndrome. Here are 6 things I’ve learned in the 6 years since…

1. When you look into your daughters eyes for the very first time, thinking you’ve “seen those eyes before” and then realize, “Oh my gosh, my little girl has Down syndrome”…. it feels like someone has swung a baseball bat as hard as they can square across your chest.

2. It doesn’t take long to bond with your child with Down syndrome. They will make you smile. They will make you laugh. They will make you cry… just like kids without Down syndrome.

3. Some have said that a diagnosis of Down syndrome is like winning the lottery of disabilities. Why is this? Because in many ways it is a more simple disability. My daughter did not have heart issues (which nearly 50% of kids with DS do), so we took her home and began raising her with the rest of our children. She occasionally gets grumpy (like the rest of us), but for the most part she lights up the room with her laughter and her smile. I’ve been amazed at how easy going she is and how easy life is with her.

4. Kids with Down syndrome will fall and skin their knees. They will get their fingers pinched in doors and drawers. They will bump their heads and get big lumps on them. They will also learn to climb stairs one big step at a time. They will learn to ride their bike with training wheels. They will sing at the top of their lungs. They will cry when things don’t go their way. They will love to jump on the trampoline. And they will steal your heart and never give it back.

5. My little girl doesn’t care that she has Down syndrome. She just wants to be loved like the rest of us. As a matter of fact Down syndrome is more of a label for our family than for our daughter. Our family has Down syndrome and that diagnosis is okay with us. I’ve realized over the last 6 years that I am a better person with Down syndrome than I was before. It has made me more compassionate; more accepting of others; more in love with people and all their complex issues.

6. Nearly 92% of parents, who through pre-natal testing learn that their little baby has Down syndrome, make the choice to abort. That’s 92 out of 100 pregnancies that are terminated! If all these babies were black, or Jewish, or gay, there would be an enormous outcry that we are living in the midst of a genocide against a certain people group, but since the genetic condition is merely Down syndrome, most people will choose to ignore this statistic and move on with their lives.

~ Kent C. Williamson, 29 April 2014

P.S. As I typed this list at a few minutes after 6AM my 6 year old Zoe woke up and started singing in her room… “Like a little bird, He watches over me. Like a little bird, He watches over me. Like a little bird He watches over me. Oh how I am free. Hallelu, Hallelujah! Those whom the Lord sets free, shall be free indeed.”

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This article was originally written and posted as an infographic in 2014 on my daughter Zoe’s 6th birthday. Here it is… click to enlarge.

6 Things About Down Syndrome

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Regrets… & Why They Should Propel Us

All our lives we’ve heard the proclamation “no regrets”. We’ve seen it on bumper stickers and T-shirts. finally after 48 years I’m coming to the conclusion that a life with no regrets is probably a life not fully lived.

The idea of regrets is typically sold to us in a dreadful manner. They speak to failure and missed opportunities, but I’m here to say that regrets can be the catalyst that launch our newfound selves. They can lead us into a new ways of living.

Recently I was speaking with my son in China, who has two months remaining of his six-month stay there. I encouraged him to get out, to go, and to do; to experience as much of the culture as he can while he’s there. I also told him that in my life I don’t tend to have regrets about what I’ve done, but moreso, I regret the things I didn’t do.

My regrets tend to be about wishing that I had done more with the opportunities I was presented with. For example, back in 1989 I had received my first job out of college. It was an odd situation where I was the only full-time employee at a small television station in upstate Wisconsin. The station’s license with the Federal Communications Commission was being kept alive by our mother station in Milwaukee for the purposes of relocation at some point in the future. My job was to keep us “on air” for the bare minimum number of hours required by the FCC. So, at 4:30 PM every weekday I would arrive at the station and fire up the transmitter. At 5 o’clock each evening I would begin broadcasting pre-recorded programs until 11 PM at night when I would sign off the air, fill in the log book, and fire down the transmitter. I worked these shifts in complete solitude. I would insert the public service announcements, the weather, and any other pertinent information that needed to be aired between programs. Once in a blue moon I’d answer a phone call from a viewer and on Wednesday’s the station engineer would bring a box of tapes that would provide the content for another 7 days.

After the first week or two on the job, it became pretty routine. And it didn’t require my full attention, so I found myself with lots of time on my hands each evening. I remember spending some of that time working on a stage play that would never be finished and as I clacked away on the old electric typewriter I would occasionally look over at the dark, empty studio where several television cameras sat on tripods pointed at nothing.

A couple of times I used the cameras to work on projects. I remember creating a demo reel that would help me get my next job, but for the most part, night after night, week after week, those cameras sat silent and unused. No, my bosses at the mother station 200 miles away never told me that I needed to use the cameras, but they also never told me that I couldn’t use the cameras. Looking back, I could have had those things running every single day. I could’ve come into the studio early and made use of them. I could’ve created a new community television series to help the station better connect with its audience. I could’ve, I could’ve, I could’ve… but I didn’t. And in the didn’t, that’s where my regrets piled up. That was also the first time I realized that a camera without a project is an absolutely worthless piece of electronic wizardry. I only lasted at the job for 6 months. When I turned off the transmitter for the final time I packed up my regrets, took them with me, and moved on.

Almost a decade later, I was up for a producing position with a company I really wanted to work for. They had flown me me across the country to interview, it had gone really well, and I ended up being their number two pick. I was disappointed and depressed. I remember regretting a moment during the job interview when I said no to something when I really should have said yes. They asked if I had any experience Line Producing, and at the time I didn’t know what line producing meant, so I said no. In reality I had line produced, it just wasn’t a term that I was familiar with. And I’ve look back at that moment during that interview for the last 20 years thinking that was the moment that guaranteed I didn’t get the job.

I regretted it instantly. I remember finding out that I wasn’t their person for the position and getting depressed, but it didn’t last long. I had been working as a producer in Virginia and I’ll never forget the day after I learned that I didn’t get the job, I walked into the studio where I worked and I announced to my colleagues that I was going to embark on making a feature motion picture. It was crazy. I had never before attempted anything like that. It was probably the biggest declaration of my life and it changed who I was and it would never have happened without the regret that I had of saying the wrong thing at that interview.

Once I spoke the words out loud that I was “making a film”, I found myself. I also had instant accountability. I knew that if I didn’t succeed in making that film, my coworkers would always know that I was a failure. So by speaking those words it gave me a sense of accountability that pushed me to complete my task. I immediately set out to write the screenplay and 10 months later we were in production on the picture. My regret become my motivator. My disappointment in not getting what I wanted opened the door to my new life.

Regrets come in all shapes and sizes. Some are much bigger than others. Some of the decisions that we make can really impact our lives for the worse. But I would encourage each of us to not look on our regrets with disappointment, but to look on our regrets with hope. A life with no regrets is surely a life not lived. May the regrets in your life propel you to do great things.

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Dear Father Time… where did you go?

The other day I heard from a new mother who was anxious to get back to work. She reached out to me to see if she could use my name as a reference in her job search and, of course, I said, “yes.” Her baby is only a two months old and mom is already turning her attention to her résumé.

As I reflected on how little time we each get with our kids I was reminded of a math calculation I performed about a decade ago when all my kids (I have 6) were under 10. Somewhere I had come across the idea of having one good hour of “quality time” with your child per week, and I thought, “how much does one hour per week really add up to?”

So the math was pretty simple…1 hour per week x 52 weeks = 52 hours per year. Now let’s say your child will move out for college when they are 18 years old. So, 18 years x 52 hours = 936 hours. And this is where I started to get depressed; when I performed the math to determine how few days this really is. I took the 936 hours and divided it by 24, and that’s when I realized that if you spend 1 hour per week of “quality time” with your child for 18 years you will spend a total of 39 days with your kid.

Yes, you read that right… only 39 twenty-four hour periods. If you want to feel a little better let’s put it into 8 hour increments (like work days). So we’ll take the 936 hours and divide them by 8 hour days. Now we have a whopping 117 days with our kids. To put that into perspective, your average work year is approximately 250 work days (fifty 40 hour weeks). So the average employee will spend twice as much time THIS year working at their job than a 1 hour per week “quality time” parent will get with their child over 18 years.

As I did the math and scratched my head I realized I was in trouble. You see, I have 6 kids and rarely do I get 15 minutes of “quality time” with any of them, much less, each of them! I’m a filmmaker and a small business owner and I work long days, and I occasionally have to travel, and I bring work home on weekends, and my phone connects me to email and business texts during meals and while we’re at baseball games and while we’re sitting in traffic. You can see why I can get depressed about this!

It was years and years ago that my wife and I committed to have family meals as often as we possibly can. And we committed to family vacations, and family car trips, and family runs to the grocery store, etc., etc. We’d do our best to make up for the lack of “quality time” with “quantity time” and we committed to making the most of the quantity time we had with our kids.

Today our oldest is a junior in college, but I’ll never forget that first night we brought her home from the hospital as a newborn and she slept all night long curled up on my chest. Time is fleeting. None us are guaranteed tomorrow and even if we were, our kids grow up so stinkin’ fast. 39 days goes very quickly and for many of us a bunch of those days are already gone. So my plea to new parents, like my friend who was polishing her résumé, is to be intentional about being with your kids. Teach them about life every chance you get… through words, deeds, and example. And of course, don’t forget to hug the hell out of them.

 

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