Zip Sliding Away

Blessings come in odd ways at times we can't predict and from sources we wouldn't expect. I suppose they wouldn't be blessings if they came another way. Our day in the woods was just such a blessing.

Katie, Clare and Gretchen were enjoying an afternoon in the trees on one of the ropes courses at Whistler. Griffin and I were along for the ride as Katie's kids ropes course experience required an adult to accompany her. As Gretchen was committed to doing the adult ropes course I was left with the ground duty. To be frank I was wasn't thrilled to be left with the task. When we booked the ropes course experience there was no mention of a need for a chaperone. So when Griffin and I went to drop the girls off I was annoyed to discover that Katie needed me to go. The annoyance was fueled in large part by the fact that Griffin was now going to be stuck wheeling around the woods for a few hours. Well, actually, I was now going to be stuck wheeling Griffin around in the woods.

So imagine my delight when an hour or so into the adventure the manager of the ropes course pulled me off to the side with a question. "Would it be okay if we get your son up on our zip lines?" I didn't hesitate. "Absolutely," I replied. The couple of hundred dollars it would cost was no issue for me to get Griffin up a few hundred feet in the air zipping along like any other kid. So imagine my further delight when the manager looked at me and said, "Awesome. This one is on us. Just make sure he gets the whole experience and lets it all hang out on the way down."

As we strapped in to the harnesses and got hooked on to the zip lines the manager looked at Griffin and said, "When you get going let go of the harness and enjoy the ride." Griffin looked at him bravely and said, "I'll try." It took some goading but Griffin let it all hang out and every time I look at the photos I am reminded just what a blessing that afternoon was.

I'll let the photos tell the rest of the story.

Nothing the Police Need To Know About

"Hey Griff, what's going on?" my MBA teammate Jamie asked last night as he stood in our kitchen.

"Nothing the police need to know about," Griffin quipped and then turned and left.

"Now THAT was funny," Jamie said, turning to me. "That is a kid with one wicked sense of humor."

"Yes he does." I replied. And if you only knew the half of it, I thought silently.

On my desk at work is the picture above. It's a picture of Griffin right around his first birthday. It's an unremarkable photo of a cute kid on a swing. But when we first got it back from the photo developers (isn't THAT a quaint concept) in late 1998 it took my breath away. You see, as Griffin approached his first birthday we had already endured three neurosurgeries, numerous trips to the hospital and our first incredibly frustrating and frightening trip to the emergency room. What we hadn't experienced yet were any words. Just a very few gurgles, a generally blank stare and maybe a smile from our little man. Our pediatrician at Doernbecher was concerned enough to refer us off to a neurologist. The prognosis was not good.

"There's obviously a significant level of delay," he told us. "At eleven months old he is performing at one month milestones. And a look at his MRI shows an abnormally dysmorphic brain. I think you can expect this to be at some level a fairly permanent developmental problem." In other words we were looking at some level of what used to be called, when we were kids, mental retardation. It was a blow to the gut. We were already ordering his first wheelchair and now this.

What we didn't know at that time was that one of the surgeries performed just prior to our meeting with the neurologist had unlocked a significant source of Griffin's delay. A large pocket of fluid called a syrinx had formed and was pressing on his spinal cord. It was causing more difficulty than we understood in Griffin's fine and gross motor development. Kids learn with their hands at this age and Griffin was barely able to roll over much less grab all of the things in his grasp.

So a few months later on a visit to Laurelhurst Park in Portland we snapped a few photos of Griffin on the swing. It was an unremarkable day. I handn't noticed anything different. Griffin was his generally lethargic self and as I packed him up and drove home I thought, "Wow, this is the rest of my life." When the pictures showed up in the mail a few weeks later I saw this picture. I hadn't noticed Griffin's reaction to being on the swing. It was the first time in his first 13 months with us that I had seen that kind of emotional reaction to anything. I wouldn't know it for years but this was the beginning of Griffin overcoming those early developmental delays. And I would look at this picture during that period of time and grieve that this was the boy I could have had but didn't get. I was glimpsing into Griffin's future and seeing through the filter of my own present.

So as I look tonight on Griffin and his wicked sense of humor I am reminded of my stubborn tendency to want to take the present circumstances and project them into the future. Be they good, bad or indifferent it is in my nature to project what I see in front of me into the forseeable future. And a picture taken in a park offered me hope I would not hold on to for lack of faith.

Retrospect and the Rookie

Retrospect is a wonderful thing. Looking at things in the past and having the ability to sum up the actions that led to the consequences is comforting. More difficult is living in and through a situation and having to sort out the consequences of one’s actions without knowing how they’ll pan out.

I tuned through the channels as a I generally do when I am trying to procrastinate something. In this case I was procrastinating studying for my general management and strategy class this Friday. The first scene I stumbled across on AMC was a particularly contentious scene from the movie “The Rookie”. In it Dennis Quaid and Rachel Griffiths were arguing about whether he should take the offer from the Tampa
Bay Rays to join their minor league system. And as I watched the argument it was comforting to watch an obviously difficult unresolved argument in the light of knowing its ultimate resolution. The perspective given by the outcome makes it an
unreality.

So as I sit here, a few days after Griffin’s latest surgery, I wonder if the arguments we have inside our house will have the same comforting look as the right decisions years from now. Will we be right in sending him back to school on Wednesday? Are we making Clare feel like a second-class citizen by not driving her the quarter mile to school as we juggle schedules? Will Katie feel unloved by our lack of attendance at her choir-fest tonight?

I’m not sure. I hope that in retrospect our decisions are remembered as being wise. But I can’t be sure. And more painfully I am not the only one will who will pay if I’m wrong.

Lessons From The Scarecrow

A friend asked me a few days back why I was writing a blog about such a deeply personal issue. Of course the easy response was the altruistic “I just want to share what we’re learning so that good can come from a difficult situation.” And being an easy response that’s what I told him. But as the days have passed I have come to a slightly more selfish and nuanced understanding of my motivations. They find their root in what I’ve been learning from Griffin’s friend Zach.

Zach and Griffin met last summer at Camp Casey. The North Seattle Kiwanis put on a week long camp each summer for children with disabilities. Last August marked Griffin’s fifth trip to Camp Casey and every time we send him off I find myself welling up in tears as the bus pulls away. I am overcome by the sight of dozens of kids in wheelchairs just like Griffin’s rallying together in the parking lot of Fairview Church. I am overwhelmed by the dozens of volunteers carrying for a week the burden of caring for a child with boundless energy and a similar reservoir of needs. And I generally find myself face to face with the reality of my life as a parent of a child in a wheelchair.

Zach isn’t in a wheelchair. Yet. Zach and his brother are two of about twelve kids in the US who have a rare form of neuropathy: they can’t feel their arms, legs, hands or feet. Because of this Zach has challenges with his balance and with walking. Walking with Zach is a little bit like watching Ray Bolger as the Scarecrow in the Wizard of Oz, and the years of falling have taken a toll on his knees. Additionally since Zach can’t feel his fingers he has done significant damage to his hands over the years which has led to partial amputations.

But Zach is a lover and luckily for us he loves Griffin. A few months back I picked up Zach for a weekend sleepover and Griffin turned to Zach and said, “You’re my weekend brother.” Zach without hesitation turned to Griffin and said, “No Griffin, we’re brothers all week long. We just don’t see each other Monday through Friday.” To put it in the words of Forrest Gump, Zach and Griffin go together like peas and carrots and nearly every weekend I am faced with yet another paradox that causes me to question the goodness of God. You see, every weekend I am confronted with a child who feels so deeply and yet he can feel nothing. And here’s where I begin to understand my motivation for writing this blog.

Zach does damage to his body, his toys, and even his house because of his inability to feel. He has broken bones and not told anyone because he didn’t know he had. There are patches on the walls in his room where he has done more damage than he knew he was doing.

And as I watched him fall hard one weekend and get up laughing I realized we are not dissimilar. Since Griffin’s diagnosis I have spent a good deal of my time not dealing with the emotional realities of the journey we’ve embarked upon. And in the process I have done damage to my friends, my family and even my home as I have emotionally tripped around, unfeeling and oblivious to the damage I am causing.

Writing these words is about being present for the grief I have avoided. It is about feeling what I have been running from for years. It is about facing the reality that my life is not what I planned it to be: it is so much more and so much less all at the same time. It is a paradox just like my friend Zach. My hope is that my writing is a blessing to others as Zach is a blessing to me.

Life At The Margins of Faith

I have always been one who has lived at the margins of my faith. If there’s a theological line to be crossed I pitch my tent near it and live my life peering over it. I have a fairly natural abhorrence for dogma and have consistently been on the more liberal side of theological issues. I am possessed by a curious mind and it leads me to be suspicious of pat answers and many of the platitudes passed off as insight today in the church.

One thing I have never seriously questioned, though, was the goodness of God. That was until a rainy Wednesday a few months back.

The phone rang at work around four o’clock in the afternoon. It was getting dark as it does around this time in February in Seattle. Gretchen was calling to check in. She was agitated, I could tell by the tone and the clip of her voice and speech.

“Your son was in rare form today: I found him outside in the rain bawling his eyes out. I left for five minutes to pick up Katie and he managed to find his way out to the road. He had crawled down there, his shorts had been pulled down to his knees in the process, his pull-up was showing, and he was absolutely filthy. I was so embarrassed and horrified. I wonder how many cars drove by and wondered what he was doing and where his parents were.”

“Oh, wow,” I said and then sat silently at my desk. Ever the empathetic man that I am, I asked, “What’s for dinner?” A brief negotiation on chicken or pork followed by a short list for the store on the way home and I was off the phone and back to my job. Truth be told I was annoyed, too. Annoyed that Gretchen was dumping her day on me before I even got home and annoyed that my son had once again managed to fail in using common sense.

Driving home I had the nagging feeling that something was missing.

On arrival at a quarter past six that night, Gretchen filled me in on the rest of the story. With Griffin sitting within earshot she explained that just after she left, Griffin had gone to the front door to see what Kipper, our five month old Springer puppy, was barking at. As he sat in his wheelchair he couldn’t see out to the street, so he opened the door. As the door opened, Kipper made a break for whatever he was barking at and bolted past Griffin and outside.

Griffin explained that he yelled for Kipper to come back. And when Kipper kept running away, Griffin felt compelled to follow him to keep an eye on him. Our front entrance includes three steps which Griffin knew he couldn’t navigate in his chair. To use the wheelchair entrance from the kitchen door, it would require Griffin to lose contact with Kipper as he wheeled around the opposite side of the house. So Griffin chose instead to ditch his wheelchair at the front door and crawl to the road where Kipper was in chase of what we think was another dog. Griffin crawled the entire length of the walk calling for Kipper to come back.  Kipper had a different plan as he scampered around a large grassy common area across the street from our house. Griffin crawled across the street in chase and in the process his shorts were pulled down to his ankles. As Kipper continued to run and ignore him he began to cry.

“There were cars coming, dad, and I was afraid he would get hit. Mom left me in charge and I let Kipper out.” Griffin began to cry as he chimed into Gretchen’s retelling. “I was afraid he’d get hit…” His voice trailed off.

I began to cry as I walked over and knelt in front of his chair and hugged him. “You were incredibly brave today, buddy. I don’t know that I could have been that brave. I’m proud of you.” He burst into a full on sob. I did, too.

I was sobbing out of frustration with myself for having been annoyed a few hours earlier. I was sobbing out of amazement at my son’s tender heart for his puppy. And I was sobbing out of the grief I had that this brave soul found himself unable to fulfill his duty.

And it was then that I found myself questioning the goodness of God. How could a loving God create a boy with such a strong heart and no legs to carry him? The platitude goes that God has a reason for all things. I cannot believe my God intended my son to find himself sobbing in the February rain with his shorts around his ankles. And while there is good to be found in all things, I am having a difficult time finding the good reason for this.

I am a believer. I believe in God and I do my best (most of the time) to follow Jesus. But moments like this have knocked the polish off of my once gleaming religion. They leave me cold and left only to find what good I can in my response. I do not know what God intends and I do not know that his intention is good. I want to believe it, though, and I guess that’s why they call it faith.

No, You Don't

He coiled back toward the window and said with an exasperated gasp and a defiant stare:

“No, you don’t.”

I stood, leaning out the window, and replied, “you need to go wander anyway, buddy.”

Guilt and anger, frustration and sadness well up as I think back tonight on this morning’s conflict. The morning had begun with such hope: a sleep over for Katie and a gaggle of kids gathered in the backyard for a day’s worth of pretend, play and role play that only kids of a certain age can. And Griffin is that age. Eleven years old with a wicked sense of humor and a sense of irony well beyond his years. I was for a moment eleven years old again and running through the woods of suburban Everett with my best friend Mike Federmeyer, pretending to be soldiers in World War II. We’d show up without a call or a text in the middle of the cul de sac at the unspoken but well understood hour when child’s play commenced each day on 143rd Street.

So, moments before, I was cajoling my son to go out on this beautiful Sunday and play. Go, enjoy the sun, Griffin. He pawed at the keyboard, squinting at the computer. “Dad, can you pull the blinds down so I can see the screen?” Uh, no, I can’t Griffin, so go find something to do outside, okay my man?

So out the back door of our recently remodeled house he wheeled. Down the ramp and to the left past the three windows that look out on our driveway he slowly pushed himself. And as I watched him I quietly wondered if I was simply being selfish and impatient or lovingly tough. My more tender side drew me toward the window and pushed it open. I’ve never been in a wheelchair so I cannot know what it feels to be sent into the neighborhood on wheels, but I felt compelled to offer what empathy I could and the universal perspective of boyhood that bonds all men together.

“Griff, if it makes you feel any better, I had to do the same thing when I was a kid. I had to go and round up friends to play. I know how you feel.”

“No, you don’t.”

And with that the gate slammed shut and his chair disappeared behind the van as he headed down the driveway. And I stood, rebuffed and ashamed, questioning my tough love and knowing without a doubt that he was right. My only question now was, am I?