Survive

The image above was taken in the Summer of 2015, a few months after Ezra was born. It was a lot of change for Danny, and he found a lot of peace sitting where the busses were parked at the school, memorizing every inch of them.

Today we found out that Danny is no longer eligible for transportation services through the school system, due entirely to the complicated circumstances that have landed him where and when he is now. It is no one’s fault; we got lucky for many years that the bus came dutifully every morning and afternoon and, though I thought we might have figured it out for another year at least, it all came to a definitive end this morning.

Danny doesn’t know yet. And if you know anything about our lives, then you probably know why we have been struggling to figure out how to tell him. I have delivered many pieces of life changing information to this kid, but I am not sure any of them have had the kind of impact that this will. He can tell you the make and model of every bus there is. He watches videos of bus safety and creates Roblox worlds full of bus stops and schools. He designs routes in his head as we drive; he has even been known to improve the efficiency of the route his own bus is traveling.

At his best, the bus was a reliable treat rounding out his day. At his worst, the bus was the only reason he went to school at all.

As I was talking it over with his extremely apologetic case manager this morning (who has no role in this beyond bearing the bad news), I said, unconvincingly: “I think it will be ok eventually. He’ll survive.”

She shifted her gaze past me into the backdrop of his bedroom, with his bus panel and traffic light and shelves of die cast busses and said: “Are you sure?” It wasn’t a joke. For Danny, this is a big, big deal.

But I stand by my initial instinct: he will survive. If we think on our lives honestly, there are probably many things we can’t imagine losing. We pin hopes for our survival on a lot of things; a job, a car, a phone, a church. And in many cases we truly DO need these things to survive. And sometimes what seems insignificant to one person would be an absolute catastrophe in the life of someone else.

Sometimes we lose something essential that isn’t a thing at all.

We may pray and beg and bargain with God and plead our case to anyone who will listen, but here on this Earth we are fragile beings who love fragile things. And loss is inevitable.

For people of faith, especially, it is hard to not take it personally when we have prayed hard for something that withered on the vine. It is devastating to feel like you went to your most sacred place to earnestly plead for what you believe you can not live without, just to find yourself staring down the very reality you most feared.

But the Lord never promised us a life without hardship; the reward for a persistent faith is not a life without loss.

The reward – for making Him a part of your life and a part of your day and a part of your thoughts – is His presence. And however large or small the loss, He will be present with you in all of the days of your grief. He will walk with you as you rebuild and find new pillars of strength. And He will rejoice with you when you realize one day that the bus stopped coming…and you survived after all.

Being James Madison

Dear Danny,

Today is the last day of school before your very late, very necessary and well-earned Spring Break.

Fortunately for all of us, you generally like going to school.  With the mayhem and chaos of the beginning of the year having calmed, and the darkness of 3rd grade having faded from open wounds into pale scars, you now wake up every morning ready to meet your day.  You try hard.  You come home happy nearly every afternoon.

Still, now that we are in the 4th quarter of your fourth grade year, you are very familiar with the tides of the school schedule and have been looking forward to this break in the action for a long time.

4th grade field trip to Harpers Ferry
By the end of last year your Dad and I knew something needed to change; there wasn’t a single member of our little family that wasn’t in some state of crisis.  As humans, we can be quick to understand that physical pain is a sign that our surrounding conditions need to change but much slower to realize that emotional discomfort is usually a similar communication.  We feel the pangs of our heart breaking and struggle to know if we should call it pain or growth.

Truly, what we were facing with you was pain.  More than discomfort; more than just a failure to thrive.  We were watching a complete deterioration of the foundation that had made you successful and happy up to that point.  We knew that what it would take to stop that erosion was nothing short of a complete rewrite of our life and family routines.

So we did that.

And we have been rewarded by the opportunity to see your successes in many areas this year.  We’ve seen goals mastered and challenges accepted and accommodations refined.  We’ve seen you call a new place Your Place and new people Your People.  We’ve seen you happy; we’ve seen you heal.

A few months ago, I remember seeing the words “4th Grade Wax Museum” on a school calendar.  “Huh…?”  I thought to myself, followed quickly by “No way.”

For most of your school career, we have invested almost exclusively in the math and language arts goals.  The “content” areas – the science or social studies SOLs – have always been a struggle.  And, because we know that finding a balance between your temperament and your academic achievement is a daily challenge, we have always understood that a certain amount of triage is necessary.

However, there is no avoiding Virginia studies in 4thgrade.

And though your amazing team at school has brought you further in this area than ever before, the requirements of this Wax Museum project seemed almost laughable to me.

  • Research an important Virginian
  • Write a 60 second speech about them
  • Memorize it.
  • Procure and wear an appropriate costume.
  • Present your speech multiple times as a “wax figure” in the gym, as student tour guides lead various groups through the exhibit.
I’ll be honest and say that not a single part of that felt like it was achievable.  I was prepared to write it off entirely and wait for an alternative assignment until one day a speech came home, complete with instructions to work with you on memorizing it.

“Danny, did you write this?”

“No, I typed it.  See?”

And just like that, it all felt achievable.

We worked on it.  We worked at home and you worked at school.  We worked in the morning at the bus stop and in the car and at church.  You have an incredible memory but your methods are your own and I had no idea how to tap into them.  No idea how to get you to a point where you would memorize something on command.  No idea where to get you a costume you would find acceptable or if you would even wear it.  No idea if you would go to the gym.  No idea if you would say your speech if a tour guide tapped you on the shoulder.

All I knew was that 7 months ago I had stood with you in the 4th grade hallway, with every administrator this new school had to offer, trying to convince you to stop sobbing and go back into your classroom to finish the day.  And here we were now, with James Madison.

So we worked on it, and we worked hard.

This is the part where you probably would expect me to say how amazingly it went.  How you stood in the gym and gave your speech and blew us all away.  How empowering it was to see you successful in a sea of your peers.

I was ready to write that story.  In my heart, I already had.

But what really happened was more like what I had feared when that calendar showed up in my email.

When I arrived at the school your name was not on the board as a presenter (probably because of the likely chance you would refuse to do it).  I walked through hallways filled with nervous and excited 4th grade Virginians and looked for your face, never finding it.  On my second pass through the halls I noticed you in a different classroom where the teacher cheerfully told me that all of the students in your class that weren’t in this performance of the wax museum were in her room.

So we talked, you and I.  We talked about the work and the costume and how proud everyone would be if you would just walk to the gym with your class and see how you felt.

Please buddy, just try.

Just say it once.

Maybe just the hat.

Just come with us and see.

And then we left you there in that classroom, happily chatting with the teacher, all of the effort of James Madison left in a bag in the resource room.

I have written before about how your relationship with disability resembles someone masterfully walking a tight rope; you place your feet expertly on the line between accommodation and independence, falling occasionally to one side or the other before finding your footing again as the brilliant, wild, neurodiverse creature that you are.

And the world is slowly catching up to you, baby.  How lucky we are to be with you in this time and place – in all of eternity – where the tides are turning and the gifts of minds like yours are finally being accepted, regardless of how they may be wrapped.

But damn.  Days like today can be hard.

Because the problem with the tight rope act is that it is easy, for us, to forget how delicate the balance really is.  It is so easy for me to get swept up in what looks like a win forming in the distance.  Easy to dismiss that you successfully completed 4 steps of an “impossible” 5 step process because I am disappointed that the last part – the moment for everyone to see you shine – didn’t go to plan.  Easy to miss that you are losing your footing on the rope, only to arrive and find you on a different side of the line than the kid I thought I put on the bus this morning.

Today was a big day at your school.  There were several performances in two locations and the building was absolutely packed with nervous excitement and joyful accomplishment. And if I’m being honest, I really didn’t want to be there.

Because the decision we make to keep you in the same programs and classes as your peers in the general education setting requires the hard work of…seeing you in the same setting as your general education peers.  And sometimes the lines of demarcation are so painfully obvious…the difference between what makes an outstanding student and an average student.  And the difference between you and, well, nearly everyone else.

Because your peers?  They are stars, Danny.  So bright and lovely.  They put in the work and they shine as reliably as the night sky.  And their parents rightly bask in their glow, charting the course of their lives by the specific hues and flickers they know and love so well.  And truly, our world needs the light of every single one of them.

But you my boy…you are an eclipse.  A force of nature and science so spectacular that your father and I and so many who love you are willing to spend months and years watching the sky, waiting for the magical moment.  And if we are in the right place, and we’ve done the calculations, and we’ve protected our hearts just enough, and the conditions are clear…we may not see you shine.

But we’ll see you change the sky.

Days like today can be hard, it’s true.

But as I feel my heart breaking now, I am inclined to call it growth.

And as long as we are growing, I know we are in the right place to see it when you blow us all away.