Pastor John Van Sloten

I have no idea how thankful I should be.

Three weeks ago a moral-ethical warning shot came over the bow of my life. It left me shaking for days. But for the grace of God.  And then, two weeks ago, our son Edward gave us the scare of a lifetime.

Fran and I were watching a movie in our basement when we heard Eddy thumping down the stairs. Turning to greet him we were horrified to see that he’d tied several pieces of string/rope around his neck (he was trying to emulate Jacob Marley’s chains from A Christmas Carol). He couldn’t undo the knots; leaving him with an inch or so of breathing room. As we quickly untied him, all we could think of was how this could have turned out so much differently. What if he tried to free himself… and tightened the cords?  I still shake at that possibility.

Once the strings were removed, and after we’d explained  how dangerous this was to Edward, all I could say and pray was, ‘Thank you, thank you, thank you…”

Over the past two weeks, I’ve been thinking a lot  about how much God holds my life. I don’t think I have any idea how protected, kept and sustained I am; my family is, our church is, this world  is. Theologian John Calvin said that were God to take his hand off the universe for even a second, everything would collapse.

Right now I know this to be true.  My prayer is that I don’t forget in the new year ahead. Every day should be filled with thanks, for everything that continues to go so right.

Sometimes the beauty resides in the juxtaposition. 

Sitting down to breakfast this morning, I noticed one of my son’s 4th year science papers on the table.  It was entitled; The Function and Activity of Different Multidrug Efflux Pumps in Vibrio parahaemolyticus.  Beneath the title was his name, Thomas Van Sloten, student ID number and course description. 

And beneath that were words pencilled in by his 19 year old downy brother; Berenstain Bears in the Dark, Stan and Jan Berenstain, Edward.

It always hits me when I least expect it.  First, as just a passing thought as I watched Edward get ready for pickup for his daily ‘vocation and leisure’ program; “This is now his life,” I thought, “Five days a week of sporadic volunteer work, various programs, and bowling and swimming.  It may not change much from this.”   Then, with a spontaneous burst of tears as I watch him find his way to a waiting cab in front of our house.  The cab driver had trouble clearly communicating to Edward which door to use, then he reached over Edward to do his seatbelt up, and then I noticed the two disabled seniors who were his cab-mates.  The thought of an 18 year old young man heading off into his day with two seniors (instead of with kids his own age – at say university or work) rattled me for just a second.  Then tears.   It seems the pain of parenting a disabled child (now man) is never all that far from the surface.

I just got a call from one of Edward’s careworkers saying that he was left by himself, sitting on a bench, in front of a building where he was to begin a new volunteer job.  Left alone.  Not handed over to another person.  Edward, with no language skills – a boy who cannot cross the street safely on his own - left by himself on the other end of town.  If I think about it too much I’ll lose it.  All those what if scenarios.   Thank goodness his caregiver had arrived 25 minutes early and, from a distance, saw the cabby leave. 

This morning I was going to write about how how hard it is for me to take a day off and turn off all of my devices for 24 hrs.  Yesterday I realized that the problem has nothing to do with workload, its really about my hyper controlling tendencies.  I am a freak at times.  Most of the time. 

But I’m supposed to be when it comes to my kids right?  To a disabled boy especially right?  Talking to the people at Access Calgary (transit coordinator for those with disabilities) I spoke of a time when Edward had a brush with death with a school bus when he was much younger.  It was winter and he and his siblings were waiting on the sidewalk across the street from our house.  As the bus pulled up I could see beneath it, that Edward has slipped on the sidewalk and appeared to be sliding underneath the slowing bus.  I ran out of my door screaming for the driver to stop.  She did, and Eddy’s toque clad head was snuggly stuck between the bottom metal edge of the bus and the curb.  With a gentle tug I pulled him out.  And he was fine.

So I’m supposed to be a control freak right?  I’m not so sure.  Of course I need to be vigilant.  It’s my calling as a dad.  But I need to also trust that God is even more vigilant, getting care workers to their jobs early some days, filling a city with people who have goodness in their hearts and would surely have helped a disabled boy if they saw him lost in some city parking lot in the middle of winter; a God who stops big yellow school buses just in the nick of time.

For the past month I’ve been looking at Edward and wondering what he’s thinking.  Because of his very limited communication capacities I never really know what’s going on in that brain of his.  Often I wonder what he comprehends of God. ”Does he understand you? Know you?”  At times I struggle with this.  But watching the animated film How to Tame Your Dragon with him last night helped. To me, the reconciling gospel was very much present in that story.  Two warring sides brought together by an individual willing to sacrifice himself for their unity; the subtext was pretty obvious.  And it made me wonder if this is how God communicates the gospel to a disabled young man…  to a disabled young man and to countless young kids and parents who don’t know him yet. 

If you’ve seen the film, here’s its biblical twin; 

“For he himself is our peace, who has made the two one and has destroyed the barrier, the dividing wall of hostility, by setting aside in his flesh the law with its commands and regulations. His purpose was to create in himself one new humanity out of the two, thus making peace, and in one body to reconcile both of them to God through the cross, by which he put to death their hostility. He came and preached peace to you who were far away and peace to those who were near. For through him we both have access to the Father by one Spirit.  Consequently, you are no longer foreigners and strangers, but fellow citizens with God’s people and also members of his household, built on the foundation of the apostles and prophets, with Christ Jesus himself as the chief cornerstone. In him the whole building is joined together and rises to become a holy temple in the Lord. And in him you too are being built together to become a dwelling in which God lives by his Spirit.”   Ephesians 2:14-22

This morning I said to my wife Fran, “Sometimes I think we forget how much it takes to parent a disabled child.”  Managing his money, vocational schooling, transportation, personal hygiene, recreation, clothing purchases, medication, etc…  it all takes time, and emotional energy.  This morning’s challenges were mostly clothing related.   It’s near impossible to find jeans that fit our uber-stout downy boy.  I’m not sure he ever feels fully comfortable in what he has to wear.  I know he especially hates having to do up that single hard-to-do button.  I remember, as a young kid, how challenging it first seemed; the hole was always too small and rigid, and the button had to be angled in in just the right way.  For Eddy it continues to be a struggle.  Combine his fine motor skill challenges with his unyielding stubbornness, and you’ve got a recipe for a 10 minute “Yes you will… no I won’t” dance.  Sitting on the couch, Edward contorted into every position possible just to avoid having to stand up and do his button up.  Finally, as I frustratingly admired Fran’s patience, he capitulated…  and he did it himself… and it was good…  the third day of the week.  Then I got to wait with him for his 1/2 hour late Handi-bus.  Most times I stew and frustratingly think, I’ve got work I’ve got to get to.  Today I just sat on the couch beside Edward, staring out the living room window with him, waiting.   Eddy leaned over and nuzzled his face into my neck and chest.  He’s so soft and warm.  And when he gives himself to you, nothing is held back.  It’s so beautiful.  And in that moment I feel again, what I’ve felt so many times over the years… a tearful sense of perfection, the knowledge that everything is just as it should be.

Bizarre afternoon.  First I get a call from someone who called just to slam another person.  Immediately sensing where things were headed I said, “Listen, if you’re calling to talk negatively about so-and-so, then I don’t want to have this conversation.  This kind of stuff happens in churches way too much, and I don’t want to be a part of it.”   The person then said, “I’m not calling for that reason at all… and then – for 20 minutes non-stop, without me saying a word – ’slammed away’.  I couldn’t believe it.   And, at the end of the tirade, when I tried to clarify what had just happened, the caller was oblivious to what they had just done.  Three times I tried to make things clear, and three times I was not heard. Unbelievable.  

Then, an hour later I’m at my son’s school, picking him up from his last day of high school (special needs class).  As I’m thanking his teachers, hugs all around, I realize that Edward has no idea that he won’t be coming back to this classroom, ever again.  To him it was just like any other day when I would pick him up.  He was totally oblivious to reality.   I found myself feeling sad for him… and then sad for that earlier caller.   The caller was oblivious out of the desire to control her world, Edward was cognitively unaware.  And both had no idea.  And it made me wonder what I’m oblivious to in life.  Do any of us really know where we’re blind, manipulative, or living an illusion?

This morning a friend glowingly spoke of how wonderful it was to have people stop them in the supermarket to see their newborn daughter.  His paternal passion was beautiful.  As he shared, I remembered how awkward it was for me when Edward was a baby.  Understand that I didn’t know then what I know now, the part about how great Down syndrome is.  So when someone walked up to our baby carriage and peeked in and then pulled back, having noticed that Edward was different, I wasn’t sure what to do.  Because I hadn’t worked things out personally, I didn’t know how to handle the situation.  Should I explain Edward’s circumstance to them?  Or just smile?  Often I just looked uncomfortable. 

But not this afternoon.  After doing 12 laps at the pool with Eddy we robustly sang from Disney’s Enchanted soundtrack with the car windows wide open all the way home.

On Sunday I baptized a little girl who was born at 27 weeks.  During the first few months of her life things were touch and go.  Will she make it?  60-80% survival rate.  Will her lungs be okay? Her eyes and ears?  Her heart?  To date  she’s made it through amazingly well.  Thank God for that.   Her mom, on the other hand is still recovering.  Alongside everything it meant to be a pre-mee mom, she was also saddled with the job of saving a small family owned company (hers).   What stress.   You wish you could do something to help.

Enter Edward and I for a pre-baptism meeting at their house last week.  (I brought Eddy because this new mom used to take him out every Wednesday night to go to the library or park or shopping.)   So there we are visiting and I hear the long version of the stress story they’ve been living for the past 6 months…  I could see the lingering strain in the mom’s eyes, and near the end of our visit I asked if I could say a prayer for them.

Then, just as I’m about to pray, Edward cuts in; , “Me first?”  It was an odd request from a kid who has stubbornly refused to pray at our family meals for years.  I told him, “Sure.”   And he did, in a very quiet whisper, that all of us had to lean in to hear.  “It’s his regular bedtime prayer,” I realized, “That long list of family, friends, dead bird pets, and teachers that he prays for every night.”   After Edward said Amen, I took over and finished the prayer.   After that the mom turned to me and said, “I heard him say Amber (her daughter’s name)”   He did.  He’s been praying for the whole family for months. 

For a few seconds we all just sat there; reeling from the shock of Edward even daring to do this.  And then when I recognize how important it was to this mom to have her Down syndrome friend pray for her baby…  I was floored.  It was so beautiful.   I was in tears.  

I am more convinced now than ever that God leans in close to hear the prayers of the disabled.

Three times tonight a cry welled up from some deep forgotten place inside of me. I’m standing behind Edward doing up one of my neckties – the one he’s wearing along with my blue shirt – in preparation for his high school grad photo tomorrow, and for just a split second I lose it…

Then, a few minutes later, as I’m helping him shave, after cutting his hair, it happens again. It kind of feels like I’m going to throw up; pushing itself out. And then, after he’s showered he comes down the stairs and plops himself down on the couch, clean shaven and cut, fresh shirt on, and a huge, proud smile on his face. His eyes are filled with innocence. And he has no idea what he’s missing…

How is it that I can still experience such pain, while at the same time know so much joy and contentment regarding this boy? Is this kind of event going to catch me off guard for the rest of my life?

The following comments are owned by whomever posted them. This site is not responsible for what they say.
grad photo tears
Authored by: Anonymous on Saturday, December 05 2009 @ 02:34 AM PST
Beautiful.

grad photo tears
Authored by: Anonymous on Sunday, December 06 2009 @ 04:28 AM PST
Hi John & Fran,
Nice to see Edward’s graduation picture!
Acceptance, possitive reinforcement from ALL their friends makes their lives complete! We have retired from “FriendShip Groups” and now live in Brantford. A month ago Derek (deaf/mute/no balance organs) come home injured and in distress, had an operation yesterday to trim an ACL in his knee, now for rehabilitation and further repairs, how what when unknown. We are always parents!
Jack & Mary Jagt

grad photo tears
Authored by: Anonymous on Sunday, December 06 2009 @ 12:04 PM PST
Thanks guys.
j.

grad photo tears
Authored by: Anonymous on Sunday, December 06 2009 @ 08:28 PM PST
dear john…in a word…yes, yes you will be caught off guard by this kind of thing for the rest of your life because that (thankfully) is who you are, ever present to moments like these.
carol