Pastor John Van Sloten

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 my 18 year old Downy boy came down the stairs with three plastic dwarfs in his hands, pointing to the middle one (Dopey) and then pointing to himself.  Whenever he does this – and he’s done if before – I feel a pang.  He knows.  For years we were unsure if he’d ever be aware of his disability (he’s quite “low functioning” as they say, and can never really tell us how he feels, or how his day went).  And we found a strange comfort in his (our) ignorance.  There’s a bliss and a freedom that comes from naivete.  But he knows.  And knowing that knew this morning I wrapped my arms around him in a long hug and whispered, ‘But you have an intelligence that very few have Edward.’  I thought about the Apostle Paul’s image of the body needing all its parts, even (especially) the seemingly less significant ones.  Where would our family be without such a beautiful young man to love, hug and hold?  How could any day be meaningful without his smile, touch and that look he has in his eyes?  Surely God, he knows his value in these things.  I think he does.  Because often he’ll vicariously connect to other fable characters, like Prince Edward from Disney’s Enchanted.  You should see the pride that fills his face when he makes that connection.  Or Snow White herself.  One day last year he dramatically walked down the stairs with an apple in his hand, took a bite, fell to the floor and let the apple roll from his lifeless hand.  As he laid there with his eyes closed my wife laughed her head off.   And then Edward stood up, smiled, and took that internally satisfied bow that all jokesters take.  You could see it in the gleam in his eye.  He knows.

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.

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

Yesterday I came home and found a children’s digital camera in our mailbox with this note, “I saw this and thought, ‘Wouldn’t it be fun to see what Edward would see through the lens of a camera?’” How thoughful! Here’s what he saw today…

Often when I officiate a marriage I’ll open with a prayer asking God to make himself known to the soon-to-be-wedded couple; to show them that they really are saying their vows ‘before him and all these people.’ Seems that God sometimes answers that prayer in strange ways; in we-can’t-seem-to-get-our-Down-Syndrome-son-off-the-dance-floor kinds of ways…

Normally Edward doesn’t come to the weddings I do. This time he had to – in order to allow my wife Fran to attend (the bride insisted that both of them come). We were both worried that having him there would be burdensome (for him and us). I think Fran would have much preferred to stay home. But she came.

Fifteen minutes after the ceremony ended – as we both wondered how long Edward would hold up – a young woman came over and asked if she could talk to Eddy. She used to be a caregiver for another disabled child (who had recently died). Within minutes she and Edward were jumping on a nearby trampoline (it was a backyard service); she in a summer dress and Eddy in shorts.

An hour later another woman introduced herself. She used to work with disabled kids. She had a great visit with Edward. During dinner, still another young woman came over and asked Edward if he’s be interested in a dance later on. She worked with siblings of disabled individuals. Edward accepted.

Boy did he accept. At one point during the evening, after dancing with the bride, Edward was dancing with 4 girls (at once). When it came time to leave, we had to drag him off the dance floor.

What a gift that evening was for us. As parents of a special needs child you often wonder about your son’s relational future. Will he have real friends? A special friend? Real relationships? Will he ever go to a dance and really want to be danced with?

The answer to that last question – evidently – is a resounding ‘Yes!’ Before leaving that night, one of the young girls (connected to the child who died) asked if she could maybe take Edward out once in a while (to the movies, respite care type stuff). We were thrilled at her offer. A few days ago she made contact, seeking to follow up.

This brought tears to our eyes.

For a couple struggling with how to find that kind of care for their boy, she was truly an answer to prayer.

I can still see Edward running down the rabbit’s warren of hallways that is his high school; boots slapping the terrazzo as he stumblingly takes each turn, the sleeves of his black down jacket making that wheezing rubbing sound. His class is in the back of the building, and yet he knows every turn. Nobody met him at the door. Nobody is taking him by the hand. As I follow behind him (he doesn’t know I’m there) I’m shocked at his complete independence; his freedom…

Edward’s cab was 20 minutes late this morning. Not knowing if this would cause problems on the delivery side of his school commute, I decided to drive him in myself. I was a bit upset as I drove. I’d just had two discussions with the cab company, ticked off at their delay. “Don’t you know that he’s disabled? This is not just a convenience issue for us; it’s a safety issue! I don’t know if those who meet him on the other side are going to be there when he arrives late.” I spoke to two different people, and made my usual, “I’m going to take this up a few levels” threats. (Yes, I’m quite pathetic this way.)

Hurriedly following Eddy’s freedom run, I half expected him to get lost, to lose his bearings, to give me the evidence I needed for my impending complaint to the school, the taxi company and the board of education. Instead, he flabbergasts me. Rounding his last turn he meets up with Les, his teacher. High fiving him, he continues on to his locker (I assume), to do what every other high school kid would do (I imagine).

I stop to talk with Les. “What are you doing here?” he asks. I explain the problem and then he goes on to convey, “No problem.” I’m not sure which convicted me more; what he said or how he said it. With a very calming tone – one that had a full, matter of fact confidence in Edward – he explained that Eddy always finds his way on his own in the morning. He’s fully independent once in the school. He makes his way to either of the gyms any time, on his own. He knows exactly what he’s doing when we make lunches every day; needing no cues. “To be honest,” Les says, “I fully expect that Edward will be able to take the bus on his own in two years.”

At first I’m confused. “He’s taken the bus for years already,” I think. But then I realize that Les meant the city bus, not a school bus. Edward taking a city bus on his own; what a huge vision! What an enabling dream! The hope that Les held for Edward’s independence far eclipsed mine – heck this teacher’s view was from another planet.

Heading back to my car I felt like someone had just grabbed me by both shoulders and shook me. “Wake up John, look at what this boy is capable of, trust a bit will you… and let go.”