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.