My son Edward has really taken to his new camera… he shot close to 3oo pictures today at the zoo. This is a wonderful way for us to see what he sees, and (given his inability to clearly communicate) ‘hear’ about his day. Here are a few of his more original shots;
This past year I have been sick with either a cold or the flu more often than ever before.
(You’re going to think this next part is pathetic) Several times I’ve wondered if my son Edward is to blame. Knowing that many of his peers from his day program are imuno-compromised, I thought that perhaps he was bringing home a disproportionate number of viruses. (Told you you’d think it was pathetic – who blames the disabled?)
Its just that every time I’ve been sick, he’s been sick too. So the connection seemed plausible. Maybe there’s something to it, or perhaps I’m getting sick for another reason.
One of the biggest challenges Fran and I face in raising Edward is his inability to communicate clearly. When he’s sick and can’t tell us what’s exactly going on, our frustration and pain are exacerbated. “Does he have a headache? Sore throat? Stomach pain? Aching joints? Burst appendix?” We have no idea what’s going on.
Last month Fran was up with Edward one night – for much of the night. At around 4:00 am, feeling a great deal of exasperation, she described some his physical symptoms to me. As she spoke I interrupted and said, “Yeah, that’s exactly what I’ve been feeling with my cold these past few days as well… so don’t worry, its just a virus thing.” Then it hit me. What if my being sick with Edward is a way of giving voice to his pain; of adding understanding and words to his illness? Then I felt pretty bad. Here I am blaming him for making me sick, when in fact, I would choose to be sick any time, at whatever level of discomfort or pain, if it meant I could help understand and articulate his condition. I would take on anything for this boy.
Surely this is how God our Father feels toward us. This is the kind of heart that chose to take on human flesh. Surely Jesus is articulating very clearly to the Father what’s going on with us. “For we do not have a high priest who is unable to empathize with our weaknesses” Hebrews 4:15
Edward and I are both home sick this morning. A good time for him to catch up on some ‘Sound of Music’ movie watching. Nothing stranger than hearing him sing, “The hills are alive…” between episodes of wretching into a pail. For me, its time to read a month’s worth of backed up journal articles and email. Right now I’m reading a CARDUS piece on how we can see the image of God in people with intellectual disabilities. Timely.
At one point in the article the writer asks, “How do the intellectually disabled image God?” And then responds by saying, “Via the immediacy, totality & graciousness of their reponse to others.” God is never guarded with us, he gives all of himself to us, and his presence always invites and never demands. This perfectly describes Edward. Because he is so unguarded, I can pour my love into him. When he give of himself so wholeheartedly, I’m freed up to respond in kind. His inate grace – never expecting, always patient, with no strings attached – inspires and releases me.
Later on in the article, the writer makes the point that the intellectually disabled also image God in their ability to befriend others. “People with profound intellectual disabilities can also befriend God in turn in response to divine initiative, through mutual responsiveness to the friends that God has provided.” These words shook me deeply. Often I’ve wondered about Edward’s ability to love God, to choose to love God. For the most part my neo-Calvinism has kept the question at bay… what matters is that God chooses him! I believe this to be true, but still…
But then I encounter this new thought in this article; that Edward expresses love to God by loving the people God has gifted him with. How beautiful is that? Even as all humanity needed the incarnate, flesh and blood, God-with-us person of Christ, to fully apprehend God, the intellectually disabled need the same. Not just to get who God is, but also as the means via which they respond to God.
I’m not sure that Edward can ever comprehend all that is so mysterious and abstract about God. But he did know his love last night as his mom washed him up, changed his sheets, and held a pail to his mouth for hours. And he did respond to his heavenly Father, even as he willingly leaned his aching body into his dad’s embracing arms.
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?