Editor’s note: As strange as this might seem, Julia’s formal educational career starts today at the three year old preschool class at our local elementary school. I’ve been anticipating and dreading this day for the entire summer, especially in the light of the wrangling we have been in with the special education department of our school district. What follows is a letter to my daughter on her first day of school…

Hello Julia –

First of all, I want to tell you how much I love you and what a blessing you are to your mom and I. You have made our lives richer and more beautiful simply by being who you are, and I wouldn’t change that for anything!

I want to start the story I am going to tell you with a picture I took while we were on vacation in June down in Washington D.C. We went down to the National Mall to look around and at that moment were at the memorial to Franklin Delano Roosevelt. Many of his quotes are carved into the marble walls of the monument.

We came up on this particular wall as a bunch of high school students were posing in front of it for pictures. As they walked away, laughing and talking, we were left alone for a moment. The idea for the photo started out as kind of a lark, but I had no idea of the impact it would have on me. Your mom leaned you up against the wall and dove out of the frame and called out, “How big is Julia?” You absolutely beamed as you threw your hands up in triumph, and I got the shot.

And then I cried. Hard.

Let me tell you why…

It’s been really frustrating sometimes getting you the help we think you deserve, sweetie. It’s understandable in some ways, I suppose. You’re our kid. We see you all the time and share some of the most intimate moments of life with you and God has revealed to us – like a bazillion times – just how incredible you are. That’s a hard thing to make institutions that were created with the intent of helping understand. Many of them have limited resources and opaque motivations for what they do with those resources. To them, you are a problem to be solved instead of an adventure to be lived out.

No more than a week before I snapped that picture, your mom and I were in a meeting with some officials from the school. We went in with an idea for what was best for your long-term future and, since we were told that we were a part of the team, we thought we would be heard. I’m not sure why we believed that, because we had been frustrated by this crew more than once in the past.

We had to be constantly vigilant over the slow degradation of services that you were entitled to over the course of the school year. You needed physical and occupational therapy. They sent a special education teacher and basically told us with a straight face that all of your goals for walking and eating could be fulfilled by this teacher with “consultation from the therapists.” They called it a “Primary Service Provider Model.” I called it bankrupt.

And yet, we went into that meeting with a proposal in mind (and a very nice lunch in hand). It was quite simple: place you in a general education setting at your home elementary school with your typical peers and a preschool teacher with twelve years of special education experience. If, after a month or two, it was decided that you were struggling in that environment, we would reconvene the team with a mea culpa and another lunch to figure out a new plan.

To shoot for the stars and have to make a change would not have been a failure. The failure would have been never giving you the opportunity. We knew that this was the intent of the federal law that was written for you – to try you first in the least restrictive environment and adjust from there.

The meeting lasted almost three hours. And it didn’t go the way we had hoped. The team from the school had their agenda and everyone had their script. It’s as if the whole thing had been laid out before we even got there. It’s as if we weren’t really a part of the team – just the recipients of a very high pressure sell job. The consensus of that team was that you needed a special education class, and they spent over an hour laboriously making the case.

But even after the grueling walk through the data that was presented, I still had the naiveté to believe that we could come to a compromise. But then the Special Education Supervisor (who has since vacated the position) informed us that the proposal was an “all or nothing” proposition. We either accepted the team’s recommendation in its entirety or none of it. If we refused the recommendation, the school would be released from its obligation to provide you with an education program and the therapy that you needed.

Now, anyone with even a basic understanding of special education law would know that that was patently untrue. The supervisor knew that it was untrue. Julia, that’s called negotiation in bad faith. I know, because I looked it up.

We left that meeting pretty deflated, but we got our mess together and asserted ourselves a little more and came to an agreement. The school would remove the social and educational goals and not be held accountable for your progress in those areas, but would still provide your physical, occupational and speech therapy.

We could have lawyered up to fight over the principal of the matter, because we still believe the special education team is shirking its responsibility. But we decided sometimes it’s better to concede the battle so that a greater good can be pursued. Bottom line – we’re in it for the long haul, and we’re trusting that God is directing us about which hills to die on. And sometimes it’s better to be collaborative than contentious.

I’ll be very honest with you. Sometimes it gets tiring running our heads against what feels like a brick wall day after day. But Julia, your mom and I will do it a thousand times more; because every day we get reminders that that there are people out there – even in the school system – who see the adventure in you more than they see the challenges.

We have spent time with the team of people who will meet you every week at preschool. Your teacher and the support staff were rooting for us as we considered options over the summer and gave us space to make an informed decision, but were really glad when we decided to partner with them. They’ve rolled out the red carpet for you and have frankly been the most collaborative team of people we’ve encountered. Only a week ago, we spent time with them strategizing how we could design the best place for you to learn.

Even at the preschool orientation the other day, we were walking down the hall to leave and a couple of older girls peeked out of the gym, and looking at your walker, asked if you had been hurt. Your mom matter-of-factly replied that you had Down syndrome and just needed a little help walking. The girls kept saying, over and over again, how cute you were and seemed really excited to have you as a part of the rhythm of the school. It’s clear to your mom and I that the staff of your school is creating a really positive culture.

Then there’s your little friend, Brooklyn. I’ve written before that your mom and I can handle the trials that come with Ds – educational, medical and otherwise. But the thing that really scares us is whether you are going to have life-giving friendships beyond us. God sent us a pretty clear messenger a few days ago in a little towheaded girl you know from daycare.

Brooklyn sought you out at church last Sunday, gave you a hug and a kiss, and in the purest and clearest voice imaginable, proudly proclaimed to the world that you were her friend. I still have to catch my breath as I remember that moment and the deeper message that it enveloped. It took the words of a child to convict me, yet again, that God is mindful of your needs and longings far more intimately than your mom and I could ever be. He’s got your back – and ours.

Three years ago to the day, just before your were born, I sat down as a scared soon-to-be dad to share this adventure with the world. For three years, a very large chunk of that adventure has been you, Julia. You have taught me so much about what it really means to live outside of myself, and I can’t wait to see what you are going to teach this new community that you are stepping into. I believe you have a gift and a call to help them embrace and retain their humanity, and to reflect the love that God has poured into you back toward the world.

In the end, I really do believe those words carved into the marble of that wall in Washington. You do have a rendezvous with destiny. And the community that surrounds you, your mom and I say:

Bring It.

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Working + Waiting = Mobile!

On August 30, 2013, in Julia's Journey, Life, Personal, by Chris

As a parent of a kid with Down syndrome (or any special need, for that matter), you find yourself never taking anything for granted. Sure, it can get frustrating watching your kid’s typical friends seemingly breeze through crawling and standing and walking and learning new words as yours is still figuring out the intricacies of sitting upright. But when we are in that healthier place of letting go of the comparisons and simply enjoying and remaining in the here and now, there is an awful lot to learn.

Julia has this slow, methodical way of forcing me, whether I want to or not, to learn the art of expectant waiting. Jocelyn has a way of teaching me to work – hard – as we wait. Both of them have it all over me in those categories.

But let me set the scene for the kind of fruit that working and waiting can produce:

A little over a year ago, we (mostly I) put a goal out there that we wanted to see Julia walking by Easter. I shared it with a few professionals with whom we were working at the time and they seemed pretty reserved to the idea – that awkward place of knowing there’s only the slimmest chance of it happening, but not wanting to be the killjoy. So we marshaled our energies and pushed forward, angling for many as physical therapy consults as we could. One of the therapists even let us borrow a walker over the summer to hopefully motivate her.

I’m pretty sure that you won’t be surprised to learn that Easter came and went and our little girl still wasn’t making tracks on her own. In fact, the lofty goal that we had set the summer before really didn’t make it through the winter as the realities of Julia’s progress forced us to change from “Easter” to “someday soon”.

It wasn’t as if there was no progress. In fact, she was using a chair to walk around at her daycare by the time the spring buds were on the trees. But it always seemed like she treated it as more of an activity than a useful, necessary life skill. Crawling was a much more efficient and familiar means of movement. And the walker? It was gathering dust by the front door at home.

There were theories. We were assured that her gross motor patterns were typical. There were few bad habits that she had to unlearn. She had the strength, but either the confidence or the will – or both – were lacking.

But the work continued. I have spent the entire summer hunched over so my daughter could grab my fingers to walk. Jocelyn focused with the physical therapists so that Julia could (with a lot of complaining) become accustomed to balancing herself, and there were endless games at home to get her standing and moving. We were even able to get her interested in the walker now and then.

We often describe the moment that Julia catches a new skill as “the flipping of the switch”. For instance, we had been working with Julia for months on learning to crawl on all fours and wondering whether she was ever going to get it. Then one morning over the last Thanksgiving holiday, she found an ample expanse of floor and just did it.

And she never stopped. We look back and say it was like flipping a switch, and remember the humor as we stood there, dumbfounded, as all of the work, all of the therapy, all of the encouragement cosmically wove itself together and played itself out in the unseen interplay of nerves, muscles, bones and the brain that was madly coordinating it all.

We have not seen a quantum jump in ability since then. There had been encouraging flashes of progress, but it had always been very incremental and hard won. But last Sunday, another switch flipped.

It started with a stroll with the walker that Julia had never taken past the neighbor’s house. I watched over my shoulder as I was watering the basil as she cruised and adjusted and cruised again past four houses to the corner. From a distance, I saw a short negotiation between her and Jocelyn and they started across the street.

I get so focused on the task right in front of me that I can often miss the adventure happening all around me, so I was a little slow on the uptake as far as what was going on. I was finally shaken out of my trance when I got a call from Jocelyn asking me to come to the playground a block and a half away. Apparently, Julia had found her motivation and was going to get to that marvelous place that she would see from the car, but never got the chance to experience. She was going to get there by any means necessary.

Once more, all of the work and therapy and encouragement and practice converged and coalesced that warm Sunday evening; and my daughter’s world got… bigger. A thousand times bigger. And as I hurried to catch up, some kids from the neighborhood joined her as she explored the structures in that little playground. And for a little while, she was just another kid and we were just another family enjoying the playground. And all of the work was marvelously worth it.

We’ve been back – more than once. But this little girl is very, very different from the one just a week ago. She is slowly beginning to discover a new, wondrous facet of her autonomy. I can only imagine the possibilities that have awoken in her. Look out, world! Here comes Julia!

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Talking to a Teenager About Heaven

On June 5, 2013, in Commentary, Personal, by Chris

One of the cool things I get to do in my position at the church is fielding a lot of the tough questions that come in. Our weekend services have a great way of drawing people in and opening all kinds of questions in people’s minds, and that’s where I come in. The subjects are very broad, from the meaning of a particular passage of Scripture to what is Kensington’s stance on baptism or communion or any number of social issues.

One of those emails came to me recently that made me stop and think – a lot. After fielding these questions over the past few years, I’ve gotten pretty good at ripping out a concise answer in as few keystrokes as possible. But I had to pause with this one. After you read it, you’ll see why it was different:

Hi,

So first I would just like to say (what you probably hear a lot) that I love your church-going experience.

I’m only 17. We started going to Kensington after my parents got a divorce, now both of my parents will take us to listen to Chris Zarbaugh (ed. note – Chris is the lead pastor at one of our campuses and a fantastic communicator) every weekend, separately. This is something they never did when we went to Catholic Church. It has allowed me to start to develop my faith more and more, something I can finally do because I understand service.

After years of chatichism [sic] and Catholic Church though, there is one question I have that never gets brought up at church.

I believe in God.

But one thing just confuses me, something no one really can answer: Why do I want to live for eternity in Heaven?

Obviously no one wants go to Hell, but why would you want to live forever and ever and ever?

I’m aware that’s abstract, forgive me for it. I was just looking for any answers you might have.

Thank you for your time,
Lauren

I got that email two weeks ago. And if I’m brutally honest, I still don’t really know what to do with it – even after wrote an answer. I was really tempted to take a look at what some other person has wrote on the subject (they’re out there) and give that to her. But in the end I decided to take a more than a few minutes and plumb the depth of all my aspirations and insecurities and ask the sometimes vexing question: “What is my ultimate hope as I stumble along in this life with Christ?”

I offer my answer (for the moment) for your consideration…

Hey Lauren –

Wow – I make time for questions like this! I really do appreciate your curiosity, because I’ve honestly caught myself with the same question in my head. So here’s my attempt at an answer:

Have you ever had a day where you were with your best friends, the weather was perfect and you were doing something fun together and wished the day would never end? Do you remember the thrill of your birthday when you were a little kid and your parents knew just how to whip you into a froth of little toddler excitement? Have you ever done something where you just knew that it was what you were created to do?

I hope so. I really do.

Maybe there have been times that you have experienced exactly the opposite feelings. I’m just going to take a couple of guesses here – I hope you’ll forgive me if I’m off the mark. Remember how crushing it felt when your parents told you they were divorcing? Remember the fear that you might have felt as you stepped into the rhythms of having to make a home at two addresses? Were there times in the quiet before you fell asleep that an inner voice blamed you for your parents splitting up? (that’s a lie that a lot of kids struggle with) Are there times – not even related to your parents’ relationship – where you catch yourself saying, “That’s just not right!” The injustice of the world is as clear as its beauty.

All of those aching feelings – both the good and the bad – are your heart longing for life as it was meant to be. In short, Heaven.

My deepest conviction – the hope that I cling to as I slog through the frustrations of this life – is that all of the wonderful feelings I have ever experienced put together will not come close to the joy of living life at its fullest potential. I look forward to a time where will spend my days learning and growing and surprising myself with the marvels that God will accomplish through me, only coming to realize at the end of the day that I was thinking too small. There’s another adventure tomorrow to anticipate with all the glowing excitement of Christmas Eve.

Why heaven? Maybe it’s to finally be delivered from the sadness that still haunts me when I think about the fifth anniversary of my mother breathing her last, and the thought of seeing her again. Maybe it’s the anticipation of finally having the time and the heads space and the patience to learn guitar (that will take an eternity!). But perhaps it’s way more than the few words in an email can describe.

Maybe it’s simply to taste life as it was originally intended by the Maker of all that is good. Raw, real and so wonderful that your heart would be fit to break for just the sight of it.

Well, that’s my take on it. I haven’t even scratched the surface thinking about this, but I hope it helps a little.

Keep asking the questions!

I have a feeling I’m going to have to keep asking questions myself.

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Day #082Let me just get this out there right now. I had a really rough time adjusting my attitude last night as I put Julia to bed. I’m not sure if it was the last of the stomach bug she’s been dealing with or the contrarianism that her whimsical toddler brain has developed, but let’s just say she was a hot, crabby mess. Don’t buy all of the angelic pictures of squeaky-clean and smiling kids with Ds that you saw on Facebook last week. They can be just as much of a pill as a typical kid.

I’m glad to say the night ended better than it started, but it was Mom that closed the deal and finally got her chilled out.

I watched all of the publicity and exposure that Down syndrome got on March 21st – World Down Syndrome Day (editor’s note: 3/21 is a play on Trisomy 21 – the genetic condition that is the basis of Down syndrome), and I am still blown away at the number of lives that have been touched in one way or another by these extraordinary people. I read the blogs by writers far more articulate than I calling for change and action – not just awareness.

We spent the day visiting Julia’s cardiologist and endocrinologist for her six month check ups. Everything is good, but now the battle front has shifted from heart valves and thyroid hormone counts to attitudes in schools and workplaces – stuff we weren’t even thinking of two years ago as Julia was recovering from her surgery.

As we have settled into the routine and begun to push into the possibilities of her preschool, I’ve honestly been a little mystified at the latent attitudes that would put my kid in a box in terms of her aggregate potential. At one time or another, sometimes from a well-meaning friend and other times from a school administrator refusing to execute the plain meaning of federal law, we and other parents have been told that we need to adjust our expectations of what our children will be able to accomplish.

Our children are often denied even the most basic physical and occupational therapies by insurance companies because they are deemed to have a developmental delay and will not progress in a way that is economically feasible. There are professional educators that have written off our children in the classroom because they have decided they will spend their adult lives never having regular contact with typical peers.

Some call it coming to terms with reality. I say it ain’t reality yet. There are challenges, to be sure, but my deepest conviction is that we have not even scratched the surface in terms of the contribution to the welfare of a community that any kid with Down syndrome can make. Perhaps we need to start redefining our terms of what those contributions are beyond earning potential and worldly accomplishment.

So one week after World Down Syndrome Day, I offer you one more voice of a parent of a kid with Down syndrome and how you can help turn the tide: We can handle the medical issues our kids have. We can push through the ill-executed policies of the school bureaucracy. We can deal with the realities of their condition as they unfold. In the end, every day is World Down Syndrome Day for us.

However…

What’s the one thing that keeps a parent of a kid with Down syndrome up at night? What has, more than once, jolted this father out of a sound sleep? The thought of Julia living her adult life excluded from the vibrance and rhythm of day-to-day life that the rest of the planet takes for granted. We’re afraid that our culture will not slow down and see the beauty that we see every day and decide to invite them in to stay.

So what do we ask? Meet our kids, look them in the eye, tell them from your heart that they, like every other human being on the planet, are hard-wired for struggle in life. But they are worthy of love and belonging.

Be not only aware of Ds, but act on that awareness. Make space – real, substantive space – in your life and your family’s life to know our kids and everyone with Down syndrome deeply, and gently resist the attitudes and institutions that keep them segregated from the mainstream of life.

I think you’ll find – as many have – the effort has a return on investment that will surprise you.

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Christmas Greetings from the Farm

On December 25, 2012, in Commentary, Life, Personal, by Chris

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It’s Christmas Eve at the farm on Willow Road. The house has long fallen asleep as I atone for my procrastination. I had every good intention to bang out this annual greeting in the light of day; but one marvelous distraction after another intervened. Visits with family and neighbors, eating way too much, quiet meadow walks in the first snowfall of the season, gift exchanges and a late night roughhousing session with Julia has its way chipping away at the time.

So here I am, bleary eyed and typing away feverishly next to a window, cracked open to let the chill of the night air keep me awake; but also in hopes that I will hear some spooky night sound that would quicken my pulse in my younger days.

WeatherVane-01Julia has lately come into the habit of waking early, sometimes as early as 5am, and this morning was no exception. I decided to let Jocelyn sleep and took Julia downstairs to snuggle in the cool darkness of the farmhouse in the comfort of her grandfather’s easy chair.

I love the moments of quiet that visits to the farm afford. They give me time and space for contemplations that simply will not deepen and grow in the shallow soil and frenetic pace of my daily life.

But as my daughter dozed on my chest, the thoughts that came to mind were not comforting ones. In the quiet of the pre-dawn light, I finally let myself embrace a taste of the pain to which I had been consciously numbing myself.

I’ve been watching, in horror, over the last several months as this world has seemingly been tearing itself apart. I pondered the empty arms of the parents of twenty Connecticut school children who are still in the throes of their grief. And I’ve watched as our nation – the world, in fact – struggles to right itself in the midst of the shock; our politicians and pundits scrambling for air time to push the “one agenda” that will supposedly be the solution to the mess we find ourselves in.

The tragedy this year has not been limited to people outside my community. I’ve been watching over the past several weeks, sometimes helplessly, as a nearly thirty-year marriage of a couple very close to me has quite simply imploded before my eyes.

In so many domains, in so many hearts, a piece of our collective innocence has been taken from us.

And I wonder what is it about the holiday that brings this melancholia out of me. Never mind. You don’t need to know how deep that rabbit hole goes; and any of you who have been following these over the last few years will know that it ends with more hope than it starts with.

Later in the morning, I read the backstory of an old Christmas carol that a friend had passed along to me the day before. I was surprised to learn that it was adapted from a poem that Henry Wadsworth Longfellow had written in the depths of personal despair. Having lost his wife in 1861 to a horrific and accidental fire that permanently scarred him as well, he would write that Christmas of how “inexpressibly sad are all the holidays.”

But that would not be the only sadness that Longfellow would experience. His eldest son, against Longfellow’s pleading, took a commission as a lieutenant in the Army of the Potomac and sustained a grievous wound in 1863 (he would eventually recover after a long convalescence). A year later, on Christmas Day of 1864, Longfellow penned a poem that began with despair and loss, and the seeming irony of the bells that tolled for peace in war’s midst…

     I heard the bells on Christmas Day
     Their old, familiar carols play,
          and wild and sweet
          The words repeat
Of peace on earth, good-will to men!

     And thought how, as the day had come,
     The belfries of all Christendom
          Had rolled along
          The unbroken song
     Of peace on earth, good-will to men!

     Till ringing, singing on its way,
     The world revolved from night to day,
          A voice, a chime,
          A chant sublime
     Of peace on earth, good-will to men!

     Then from each black, accursed mouth
     The cannon thundered in the South,
          And with the sound
          The carols drowned
     Of peace on earth, good-will to men!

     It was as if an earthquake rent
     The hearth-stones of a continent,
          And made forlorn
          The households born
     Of peace on earth, good-will to men!

     And in despair I bowed my head;
     “There is no peace on earth,” I said;
          “For hate is strong,
          And mocks the song
     Of peace on earth, good-will to men!”

And if Longfellow’s verse had finished there, darkness would have won. And in my moments of despair, it has been scarily easy to let myself give in and be utterly overwhelmed by the hatred, the senselessness, and the crushing grief all around.

But there is so. much. more.

In the midst of the pain, there are reminders of the beauty that will eventually overtake it.

As a whole nation and I were struck dumb by the shootings at Sandy Hook Elementary, while some commentators repeatedly asked if God was, at best, an absentee landlord and other commentators shot back with the standard right wing theo-social talking points, a friend decided that she was going to simply be different. Here is her Facebook post less than a day after the incident:

          This is my “Do Something” in response to my visceral maternal alarm bells.
          Hurting people hurt people. So I will love people. I’m going to be a one woman
          love flash mob. I will make eye contact. I will smile. I will love on my sphere of
          influence and help them love on others. It’s not just a gun control or mental
          health issue. I think its a love issue too. A fear issue. I will not live in fear
          and turn inward. Love always beats evil. Always. It has to. Join me. Share this.
          Smile. Love. Do Something.

I’m embarrassed to tell you that all I could manage at the time was to choke out four words in response:

Bravo, my friend. Bravo.

But for me, it was an early reminder that this season reminds us of: In love for us, God came to those who wanted no part of love so that the reorientation of history and the transformation of our futures could be made possible.

The small decisions to love are not all I stand in awe of. I have friends who are pursuing a creative way toward peace between Palestinians and Israelis. Others are pulling up stakes in the comfort of the suburbs to continue their lives in the neighborhoods of Detroit. Others have decided that clean water should not be a luxury for the Pokot people in Kenya and are working tirelessly to drill wells. Some of my favorite people in the world have committed their lives to build an enclave of hope and beauty in the midst of despair in Dowlaiswaram, India.

Perhaps the reminder of Love enfleshing itself in humanity on that unlikely day in that unlikely place is the invitation of a return to the innocence that we lost. It is in these and countless more reflections of that love where the last stanza of Longfellow’s poem is made manifest:

     Then pealed the bells more loud and deep:
     “God is not dead, nor doth He sleep;
          The Wrong shall fail,
          The Right prevail,
     With peace on the earth, good-will to men.”

Peace on earth, goodwill to all humankind. To that worthy mast, I have fastened my heart. To that improbable, inconvenient, overcoming, all-consuming truth of a here-and-now Savior (who I do such a lousy job representing), I commit my life to pursue.

And whether or not you decide to pursue with me, I think we can all agree that the world would be a better place if we decided to love first and do something out of an overflow of that love.

I give God thanks for all that you do, and wish you all the best for Christmas.

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