My Facebook feed has been blowing up over the past 24 hours with all kinds of videos, images and well wishes from our community. It started last night with a video from a family that has been walking alongside us – then a text message from the principal of Julia’s school telling all of the students to wear their craziest pair of socks as the beginning of a more intentional celebration for a sliver of their community.
It’s World Down Syndrome Day – the one day of the year it is universally cool to be a friend of someone with Ds! So allow me to put on my “crazy socks” and tell you a little more of what’s going on from the perspective of a man whose life got ambushed by a little girl with an extra chromosome hitchin’ a ride with the typical 21st pair.
If you’ve been hanging around my social media feeds for any time at all, you’ve been acquainted with Julia. As a freelance photographer, I try to regularly put out a picture to let folks know how she’s growing. You’ve seen her through the walker stage into preschool, the endless hours of therapies, and the ubiquitous “giraffe horn” hair buns that Jocelyn fashioned to keep her from chewing on her hair.
We’ve received unceasing encouragement from all of you over the years – from the comments on how cute and precious she is to the challenges we hear from you to press on through the adversity of navigating the bureaucracy of service providers to get her the help she needs. Sometimes I even wonder if Julia’s social media following outpaces Jocelyn’s and mine combined! Such is the life of a little girl with her own entourage of stylist (Jocelyn) and publicist (me).
But even with the love we get from our community, I’ve noticed a change in the way strangers interact with her. There is now just a tiny minority of people who don’t quite know what to do with Julia when she busts into her ballet routine in the middle of a crowded mall or expresses her still inarticulate but very clear frustration with directions. Don’t get me wrong – there are still loads of smiles and comments on how beautiful she is. But sometimes I hear the unspoken “… for a kid with Ds” at the end of the compliment. There is a quiet standard I hear that seems to be applied to all school age kids where “typical” becomes “normal” and “normal” slides into “expected” and these young souls are filed on to the treadmill of striving and competition that will follow them through adulthood. It’s an atmosphere that my kid just isn’t built for.
We’re getting to the stage where, just like any kid her age, Julia’s innate cuteness is starting to wear off and the real differences (along with some of the attendant social embarrassment) are becoming more pronounced. Julia is very tentative and even fearful of high-energy situations that she’s unfamiliar with. She is a creature of habit whose desire for quiet and television time can torpedo an evening social gathering. And we are still fighting for every syllable in her speech therapy – the progress is real, but painfully slow.
I’m sure that some of this is due to my own hang-ups. I still have to remind myself that despite a world bent on progress and its hostility toward anything or anyone that isn’t economically value added, there are people – lots and lots of people – who know that value isn’t solely measured by productive output. There are those wonderful people who love the differently abled for their intrinsic humanity and not the packaging they come in. They’re willing to bear with our Julia because she belongs to them as well – no matter what her mood happens to offer up at the moment.
One thing you know you’re going to get: pure, unfiltered, no-hidden-agenda Julia. Sometimes impolite, other times a fist bump or a hug – all of it is very, very real. This kid has no guile and you never have to wonder what she is feeling. And in a world full of agendas and deception, that can be as refreshing as it is frustrating; because with every interaction, I have to decide if I am going to press my agenda or enter into her simple desires.
Julia forces me to step off the treadmill of my agenda and engage with hers. She encourages me to be a little less selfish and reminds me that my story is only a part of the larger story. How can that be a bad thing?
So here’s to our girl – with all of her love, simplicity and challenges. With a community like you behind us, we get to experience the love and support of World Down Syndrome Day all year round!
It’s Christmas Eve at the farm on Willow Road; and like a large part of the Midwest, we’re experiencing an unexpected heat wave. With the last several days of unseasonable warmth, I’m pretty sure the newly planted wheat crop doesn’t know what to do. After a blustery night of rain, the clouds broke and the morning sun rose on fields of shoots in tidy rows bearing a green normally reserved for spring. And with it, the local farmers are in the tension of optimism of strong early growth and the rueful worry of a cold snap damaging the delicate seedlings that are usually insulated by the snow blanket.
The county road commission closed the bridge over the creek as well, forcing some to take a three mile detour to get their equipment from one field to another. It’s also made the Christmas visits by neighbors a lot lighter and drive by traffic almost nonexistent this year. Even this late in the season, you would expect a car or tractor to pass by every half hour or so; but the change in traffic has made our little corner of the township feel even more remote and quiet than usual.
Not that there isn’t plenty of activity in the house. Julia is still keeping us light on our feet, but she’s now in bed dreaming of a visit from Santa (yeah, she’s starting to grasp the concept) while Jocelyn is in the kitchen preparing a Christmas breakfast of french toast muffins. And I’m sitting by the fire, wrestling with a slightly embarrassing story that I think I’m supposed to share with you – trying to piece together how it connects with a greater conviction that’s been brewing in me over the past few months.
So here goes.
Julia has really been a challenging but fun kid to have around over the past several months. Fun because we are seeing her make so many great strides in her ability to communicate and participate in many of the rhythms of life – challenging because of a real streak of willfulness that can really bring Jocelyn and I to the edge as she pushes back against the seemingly reasonable expectations that we have. (By the way – don’t jump to the comment section and lambast me quite yet. I know the irony of that last sentence.)
At last year’s church Christmas pageant, I caught this shot of her in a moment of unconscious harmony with the planet and bursting pride for me. I chuckled to myself, knowing that nearly every other kid was onstage behind her. She had no interest in being with the rest of her class (too chaotic), but she was owning that streamer that she was waving.
In the months that followed, she blossomed in a lot of cool ways, including a ballet class she took last spring. After standing there on stage during the final performance while her classmates danced, she finally joined them in line and performed with them. Breakthrough. We were all a mess – including her teacher, who told us through her tears that she had never seen Julia do any of the movements in class. She would only stand there and watch the other girls. But it was clear that, in her way, Julia was getting it. Even now, we occasionally sing the little song they played and she’ll own those dance moves just about anywhere. She’ll even pause in the middle of a busy mall full of holiday shoppers to bust a little move when the inspiration hits her.
So I was really looking forward to the Christmas pageant at church this year. It was totally unspoken, but my hope was to see another step in the journey. Who knew? Maybe she’d actually step up on that stage and take her place with her classmates. So many possibilities…
So with camera in hand, I waited with the rest of the proud parents in breathless anticipation for what might be. And (as you’ve probably guessed by now) it didn’t go as expected.
Julia crept tentatively into the auditorium with the rest of her classmates; but as soon as the music started, she bolted back up into the hallway as if she had been pushed by the force of that first power chord from the electric guitar.
After a bit, I stepped up into the hallway to see my daughter with her back to the music and lights, faithfully doing the hand motions that the kids were doing on stage. I asked her if she wanted to come out with me and got an emphatic “no”.
She performed unseen for the rest of the recital.
And I was left standing there, wondering what to do with the bitterness I felt. It wasn’t wholly directed at her, but more at the situation and myself for setting up a standard in my head that Julia was under no cosmic obligation to fulfill. I understood that reality in my head at that moment, but it was still a real blow to my heart. I’m sure that with more time, I’ll have the perspective to be able to look at the situation with more balance and optimism. But as I write this, I’m just not there yet. I’m still nursing the grief of a little dream that died.
It took the teaching pastor that day wisely reminding everyone to congratulate their kid to begin to bring me out of my funk. I knelt down, hugged and kissed my little girl and told her how proud I was of her; and in that moment it changed from an act of obedience to something a little more genuine. I realized – even as I was saying the words – that I was proud of her and out of all the little girls in the world, I would choose her first.
I learned (again) what it means to love – even when you have to push the disappointment aside. Because in the end, those disappointments are of my making – not my kid’s. And I pray for a posture of heart that dares to dream little (and big) dreams for Julia and to work hard for and with her, abandoning the results to a Love that holds her more dearly and sacrificially than I have the capacity for in this life.
THAT is the Love we celebrate this season.
It’s Christmas Eve at the farm on Willow Road. We’ve had some unseasonably warm weather here over the last few days with a lot of rain and mist on the fields – fallow except for those planted with winter wheat. We saw our neighbor Jim Laramie earlier, who stopped by with the most amazing homemade toffee. He told us it was his first year trying his hand at it, and all I can say is that it was quite a success. We are even now hovering around the computer for the Skype call with our friend Malcolm from the U.K. There’s a fire in hearth, cranberry glazed pork tenderloin waiting for dinner; and after the maddening rush of Christmas preparation, we’re finally feeling the permission to breath again.
I have to admit at the outset that I came into this season with a tiny bit of dread. It wasn’t necessarily the quickening pace of our lives with all of the holiday expectations (we’re still “that family” that puts out 150 or so Christmas cards – and the list is only growing!). Actually, it took me a while and some real soul searching over the last month or so to put my finger on it.
The first string I picked up and followed was the realization that I wasn’t anticipating the Christmas gift exchange. Normally I’m at the front of the line with a list of the things I want; but when Jocelyn asked me what I wanted last month, I couldn’t come up with a thing. Even scarier, it wasn’t because I was feeling any sense of contentment with what I had. As I pondered it, I realized that it was a weariness of this practice of endless acquisition that we westerners seem to be locked in. I had simply become “gadgeted out.”
I also spent a lot of time thinking through my holiday malaise as I listened to Christmas songs on the radio (and yes, I waited until after Thanksgiving). It’s amazing how they can conjure up so much sentimentality with the warm images of family coming together and the anticipation of Christmas morning. After years of great family memories, the older generation’s passing and exodus of the younger generation across the country have thinned out the celebration of Christmas on the farm. What’s more, it felt as if the songs I once enjoyed became an inventory of the experiences that were more in my past than my present – or my future.
And I very well could have stayed in that funk, but I believe I was quite literally delivered by a Christmas carol you’ll rarely hear on the radio. Dating back to the 12th century, the Wexford Carol is one of the oldest carols that we know of in the European tradition; and it was the first verse that reached out and captured my heart:
Good people all, this Christmas time,
Consider well and bear in mind
What our good God for us has done
In sending his beloved son
With Mary holy we should pray,
To God with love this Christmas Day
In Bethlehem upon that morn,
There was a blessed Messiah born
To consider well and bear anything in mind can be a real trick in the crush of the holiday treadmill – much less the spectacular thing that happened in that town in a backwater Roman province no one had ever heard of. How easily we – I – forget. But in those simple words I was reminded again of the gift that outweighs anything I could have gotten from Amazon. Amid all of the wonder that our holiday-industrial complex offers, this was the thing my heart longed for.
And somewhere in the second hundred playbacks of “Happy Holidays”, I started to realize that instead of mourning the loss of all of the family experiences of years past, it was far more life giving to be grateful that I ever had the opportunity to have those marvelous experiences in the first place.
Even better? Out of an overflow of that grateful heart, I need to pour myself out to give others a beautiful Christmas memory. So with my heart steeled with that conviction, let the real holiday begin…
Four World Down Syndrome Days have passed in my daughter’s life, and this will be the third one I’ve written about. I missed the first one because it was only a couple of months after her heart surgery when we were still taking in how marvelously normal things were becoming.
A lot has happened since then, and I’ve been scanning through some of the other blogs of parents of kids with Ds (it’s all but compulsory to do a post on 3/21 – I’m no different) to hear what they’ve been saying. Much of it has been personal, some of it political – all of it has been eloquent. I hope I can offer the same eloquence, but I will admit to you that I was tempted to let the day go by unrecognized.
But a writer friend of mine reminded me this morning over coffee that one voice left unspoken will leave an uncountable number unblessed for the hearing. I’m really trying not to be overly dramatic when I say this; but I really wasn’t obligated by the rest of the Ds community to write. At that moment, I felt compelled by something much deeper to speak into the din to change a few minds and maybe make a few lives better.
The message is that important, but I’m not sure how much of a blessing it will feel like on first reading. I would be remiss not to warn you in advance that this was a tough message to write and, I am sure, will be just as hard to read.
Most of you know that I’m a pretty avid photographer, so I spend a little time every day flipping through various articles to keep up with what’s going on in the industry. A few days ago, I came across a story about a photojournalist who got access to three psychiatric institutions in Serbia and Kosovo while he was living there between 1999 and 2002.
My internal censor told me that I really didn’t need to see it; but after some hesitation, I clicked on the link and did my best not to let the images that followed steal my soul.
It didn’t work. They can only be described as worse than anything I’ve seen from the Nazi concentration camps. Why? Because by the time the Allies liberated the camps and started documenting the atrocities there, the children were all gone.
But as I looked at the faces of some of the children (some of them clearly with Ds) in those beleaguered, underfunded wards, I admit that I asked God about the broken lottery that landed those children there and my daughter Julia in a modest suburban home in Michigan.
I found out later that as a result of the journalist’s work, funds were raised and NGO’s intervened to improve conditions; but in that moment, it scarily got worse.
At first, I was glad that our society has become so enlightened over the last several years:
- The average life expectancy for a child with Ds has more than doubled in comparison to age 28 in the mid-1970s when institutionalization was still the predominant answer.
- Public school inclusion of children with Ds and myriad other disabilities is the law of the land, if not always the practice in the schools.
- The overwhelming majority of children with Ds learn to read and write and can eventually gain some level of independence.
I felt better knowing that the institutions (in the U.S., anyway) were shut down and we were no longer warehousing our differently-abled children.
But then as I was sitting there pondering it, a quiet voice inside of me answered…
We’re not warehousing them anymore. We’re killing them instead.
When I’ve poked around the internet in the past looking for the abortion rate of prenatal children diagnosed with Ds, a figure of 90% often bubbles to the top of many searches. It turns out that it’s not a true number, but the reality is not much better.
A systematic study of pregnancy data published in Prenatal Diagnosis in 2012 – widely considered the most reliable to date – put the number at closer to two out of three pregnancies being terminated after a prenatal Ds diagnosis. And with the development of new non-invasive blood screens earlier in the pregnancy, the opportunity is only going to grow.
Now I don’t know where you land on the abortion debate; but whether you agree with it or not, the fact remains that there are a whole lot of children with Ds that would have lived except for direct human intervention before they were born. And if they had been born and lived, perhaps they might have surprised their families and communities with their intrinsic good – even if their arrival was unexpected.
The Ds community is a pretty tight one, and we can be pretty brutally honest with each other when the need arises. We share our frustrations and fears for our kids’ present and future; but I can’t point to any family that could imagine life without their kid – Ds or otherwise. Mine certainly can’t. And all you have to do is take a cursory look at Facebook today and there’s a friend sharing a link with a testimony on the unexpected blessing a kid with Ds has on families all over the world.
I guess I’ve said enough about the brutality at home and abroad – and I’m even willing to entertain the possibility that the aggregate lot of people with Ds is on a slow upswing. But my argument is this: Whether we want to admit it or not, the world is still pretty hostile to our friends – and folks with a whole crap ton of other disabilities as well – and it’s in the name of efficiency (they aren’t fast enough), consumerism (they don’t spend enough) and selfishness (they aren’t “part of the plan”).
So okay – now for a little dash of hope:
Let me hasten to add, here, that I can never remember a time in my daughter’s life that I know of her being overtly disdained or excluded. God has blessed us with a marvelous community that treats Julia like a little rock star. But a day is coming when the heartbreak will happen. I don’t know if it will come from honest neglect or thoughtlessness, or worse, from boorish and mean spirited insensitivity; but I do know that whoever it is, they will see Julia not as a person, but a problem. She’ll be a stranger to them.
That’s the real difference. Our community has surrounded and accepted my daughter. They are interested in her life, they know her and have told the world, “She belongs to us.” She has become important enough for people to turn aside and take time to walk with her through life. And that’s where we have a shot at really making a difference.
There are a couple of challenges I want to humbly offer you:
First of all, Get Informed. Take a moment and check out some of the facts about Ds. Most of the statistics I got for this little tirade, I found right here. There’s some sad stuff, but a whole lot of really hopeful stuff as well – just like anyone else’s life.
But more importantly, Make a Friend. The reality is, you can never be a part of the oppression of people you really know, but it’s estimated that only 38% of the U.S. population knows someone with Down syndrome. So take the time to turn aside and really be blessed by one (or more) of these truly amazing people.
In the end, it’s about the adding more voices to the human conversation. Folks with Ds may not be articulate by conventional standards; but make no mistake – by their very presence, they will speak love into a world that needs it so badly. It is a far more beautiful life because they are in it.
It’s Christmas Eve at the farm on Willow Road. The temperature barely got above 20 degrees today, but a strong sun melted off the dusting of snow we got last night and its reflection off the white and fallow fields made it hard to look outside today. But now the light has mellowed and the afternoon shadows have lengthened, and I sit in the living room as a Christmas Eve dinner of salmon with Meyer lemon is being prepared (don’t worry, I’ll be doing the dishes!). We may even get down the road later tonight for a bowl of Jim Laramie’s marvelous homemade gumbo!
The quiet and much slower rhythms of the farm are a welcome change from the frenetic pace of the city. Most of the farm implements have been covered up for the winter and the farmers in Saline Township take a grateful sigh of relief now that the season’s crops have been harvested and the winter wheat has been sowed.
It’s interesting and a little sad, though, that the Christmas rhythm out here got a little slower this year. We normally would have been out the door not long after breakfast today, making a round of visits to the older family – especially my aunts. I said my last goodbyes to my Aunt Cora a month or two ago, and her sister Pat has moved down south to be with her children. And so our family’s world got one orbit smaller this year.
I’m seeing it along Willow Road as well. One by one, the dairy farmers let go of their herds until the nearest operation is three or four miles away. Our neighbors (and my adopted parents) have finally divested of their hog operation after nearly fifty years. After abusing their bodies for so long, they said that all they would feel was achy after a long day tending the farrowing house and finishing barn.
Even my Dad is getting to an age where he doesn’t want to bother with a lot of things these days – and at nearly eighty-three, he has every right. I came out a couple of weeks ago and got a Christmas tree up and the traditional wreath on the house, more for my own nostalgia than anything else. Now that he has throttled back on his volunteer hours up town, many of his days are spent with crosswords or books in the quiet of the farmhouse, coffee or an occasional breakfast with friends and afternoon cribbage with his girlfriend, Sue.
And it would be really easy for a guy of this age to begin to despair of life. With friends and family of his generation passing away and the natural physical inconveniences that come with age, retreating from life can seem like a reasonable choice between a lot of unsavory alternatives.
But it took one of those silly recordable storybooks you buy at the Hallmark store to remind me of a more hopeful trajectory of a life well lived. Jocelyn had picked it up last year during the post-holiday liquidation of all the Christmas merchandise. She brought it along to the farm, intending to record the story for Julia to follow along and learn about the Nativity; but I suggested we have Dad do it. It’s not much fun to think about, but one doesn’t need to have skill in actuarial math to realize that we will outlive him. I thought it would be a nice way for Julia to remember her grandfather on a special day.
So Dad and I sat down at the kitchen table while Julia was napping and recorded the story; but the weight of it didn’t really hit me until later when I played it for Jocelyn. It was a tinny, digitized recording depicting a childish, sentimentalized version of Jesus’ birth, but its pricelessness brought us both to tears within the first few words.
Behind that simple story – from the promise that love finds a way to the final words of my father’s love for his granddaughter – was the voice of nearly eighty-three years of experience. Those years had seen many things – marvelous and tragic – from living through the Great Depression and a world war to serving his family and community through the country’s meteoric growth. There were, to be sure, glimmers of the prosperity in his voice, but it was the heartbreaks that he lived through that imparted its weight and depth.
And it was the story my father read of an improbable birth in a place fit only for animals and castaways that reminded me: despite the frustrations of life and the slowing, painful pace of age, Love played the ultimate trump card that overcame the separation from everything good that is the ultimate fate of us all. Love did not give up on us, even while we were still shaking our fist in defiance. Love loved anyway, sacrificed anyway, became vulnerable despite humanity’s track record and pitched his tent among the lowliest, yet could still run circles around the mightiest.
Love came not to condemn us – any of us – but to save us. Because each life that walks this planet is of inestimable, intrinsic worth.
And I heard – again – the wonder of this Story read in the quavering voice of my father on a cold Christmas Eve.
I give God thanks for all of you and wish you all the best this Christmas.