The Curtain Has Closed On My Forties…

Well, last night the curtain closed on my forties, which means that today it opens on my fifties. For the last few years I’ve had a sinking feeling about the arrival of this day. Mainly because from 47 though 49 I thought of myself as “late forties”, but at 50 it’s really hard to think of yourself as anything more than “middle aged”. Of course, if we’re lucky enough to get 70 years, then I guess 35 is really the middle, so welcome to “middle age” my 35 year old friends.

Last night I celebrated my last day of 49 by watching the opening night performance of the Arthur Miller classic Death of a Salesman at Live Arts here in Charlottesville. The Pulitzer Prize winning play tells the story of Willie Loman, a washed up traveling salesman who has a hard time recognizing the emptiness and ordinariness of his life and whose desire to make the necessary changes is just not quite strong enough. It’s a brilliantly written story that some find depressing, but in it there is a painful hope as Willie’s son Biff comes to terms with his own emptiness and takes charge of his life to begin the process of change; to pull out of the downward spiral that consumes his father.

In many ways Willie Loman is “everyman”. His emptiness is our emptiness. His ordinariness is our ordinariness. His struggle to make a better life is our struggle. Even in hard circumstances we see glimmers of hope of how life could be better. Sometimes we pursue that hope and the doors open, but like Willie, sometimes those doors close.

I don’t believe in happenstance — I believe in design. Which is why I had to be in the audience of Death of a Salesman on my last night of my forties (an audience who, by the way, gave a standing ovation to the cast of the show — Bravo!). Over the last week as my turning 50 drew nearer I began to have an amazing (even surprising) sense of peace about this big day. And guess what I realized? It’s you, my friends, who will make “middle age” so wonderful.

When I was in my 30’s I didn’t have many friends in their 60’s and 70’s, but now in my 50’s I do. I also now have many friends in their 20’s and 30’s. This alone is going to make my middle age 50’s an enormous joy; the wisdom of those ahead of me, and the crazy adventure of those coming into their own behind me. In many ways I feel like I’m perfectly balanced on one of those old school teeter-totters; my older friends on one side and my younger friends on the other… perfectly balanced.

So as I stand on the edge of a new decade of life allow me to make a declaration (my anti Willie Loman declaration). As long as God allows me to stand on this great green earth I intend to do the following: to create out loud (films, art, beauty), to emote out loud (tears, laughter, joy), and mostly, to love out loud (family, friends, even enemies). I hope you will help keep me accountable to these passions and that you may even be inspired to pursue your own.

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.

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