Supporting families with special needs
I was having lunch with a friend awhile back. He asked me how Need Project was doing, and I started to tell him what we were up to. After I laid out everything we were trying to accomplish he shook his head and asked me a question, one that I’ve answered before but hadn’t had to respond to in quite some time. “You’re very passionate about Need Project,” he pointed out. “What made you start it in the first place?”
This moment stuck with me because of the book I have been reading lately, which deals with this very question. It is a business-based book, but its premise applies to ministry as well. Its thesis is that when businesses start out, they worry about the wrong things. Typically they focus on the what; what they do. With non-profits this takes the form of our programs, what we are doing to help people. The book, on the other hand, suggests that the most successful organizations start with the why. Why is it that we do what we do? According to this author, if we know the why it will motivate us even when times are tough. It will allow us to focus on our goals while others may get off track chasing things that don’t matter. The day-to-day evaluation of what we do is important, but when our actions are driven by an overriding why, this principle becomes the motivator that makes everything else happen.
This made me stop and spend some time in reflection as to why I started this ministry, and why, after eight years of ups and downs, I continue.
If you know my story, you know our first child was born two months premature. Over the next few years we slowly learned about his issues, and came to grips with his eventual diagnosis with cerebral palsy. As a young dad this upended my whole world. Call it foolishness, but I had just assumed everything would go according to plan, that everything would be easy. I was not prepared to raise a child with cerebral palsy. The years of surgery and recovery, the births of our other children, which were equally traumatic, all of this has worked to mature me. What I know now, twenty-three years later, is that even without a disability in our family I was foolish to think everything would go smoothly or according to some grand design of mine.
In 1938, a twenty-nine year old clerk from the London Stock Exchange recognized a desperate need in Nazi-occupied Prague, Czechoslovakia. There were a lot of children in danger from the impending war who had to be rescued. So Nicholas Winton arranged for more than 650 children to be put on trains, transported through Germany, and eventually brought to England. You can read his story here: CBS News Story
Then, as if nothing had ever happened, Nicholas went back to his job. For nearly fifty years he didn’t even speak of what he’d done, until his wife found his documents in their attic. After his heroics were brought to light, Winton downplayed his role in the events, and until his death last week he remained humble about what he had done. Winton never seemed to see his actions as praiseworthy in his own mind. He saw only a moral imperative to save children.
I love Winton’s story, and although later in life he gained notoriety for what he had done, primarily because others found out about it, he never saw himself as much more than a simple bank clerk. He lived a quiet life, and when things needed to be done, he did them.
His story reminds me of so many parents I know, parents who are good people. They don’t perceive themselves as heroes, nor are they seeking the limelight. They love their families, and when their circumstances changed and life presented them with a challenge, they simply stepped up to that challenge.
It seems I may have struck a nerve with some by posting one father’s blog entry on Facebook. I came across a post by a father who said that he hated his child having a disability and wished there was a cure. This began a lively, unanticipated discussion, and in the past few days, I’ve been lead to ponder the question of a cure. If there was a cure for your child or family member’s disability, would you want it? I have talked with several parents about this, because the answer is not as straightforward as it seems. My son’s disability is, for example, physical. Cerebral palsy has caused him to struggle with physical challenges, and accommodations have had to be made to help him stay mobile and to make things accessible for him. While he does face problems in some areas, others are well within his abilities. Would he, however be the same person he is today without having gone through all of these struggles? The surgeries, the therapy, the people he’s met, and the experiences that have shaped his life, starting from birth and continuing to the present day, have had an effect on who he is. I am not saying that children who have not had similar struggles are not capable of having the same character traits. At the same time, I don’t know if you can teach the particular lessons Kyle has learned. Nevertheless, as his dad, I would not wish those struggles on him. I have dreamed, not of a cure that would alter him as a person, but one that would shelter him from the pain of a harder life. In other words, I want the man I know and love without dealing with the heartache of a disability. But this seems like an impossible compromise. To get the character without the struggle is unachievable; it is my own scares and trials that have made me who I am. And yet I cry out sometimes that life isn’t fair, and ask God why it isn’t.
I put the question to a friend who is in a different situation. She is a mom who recognizes that her daughter is precious to her because of who she is; at the same time her personality is greatly affected by her disability. While some special needs, if removed, would likely not alter who that person is, others are so fundamentally a part of them that it would seem a cure would completely alter their entire identity. Faced with this problem, how do we choose? Would we accept a cure or not?
I am a very proud dad this month. My oldest son just graduated from college. I have many reasons to be proud; he graduated from a good school, with multiple awards, and even got to be one of the speakers at his graduation. I am proud because of all the hard work he has put in over the last four years to get to this point. As it turns out, I am also proud of us as parents. It wasn’t as easy to get to that point as you might think. You see, Kyle was born two months early, and complications ensued because he was born with cerebral palsy. It has not been a smooth road we have traveled, and we have faced a lot of fear and trepidation along the way. I can look back now at many of the things we agonized about and wonder: why were we so worried? What were we really concerned about? Now, of course this doesn’t mean I have stopped worrying. Today, I worry about what he will do after graduation. Nevertheless, many of my past fears were boogeymen I created, not real problems. Was I worried my son would starve to death? Was I worried he would get lost under a pile of his own dirty clothes? We chose the school based on many of our concerns: we looked for the major he wanted, but we also needed to ensure his ability to get around to services and classes. We picked the school which gave us a certain level of comfort and assurance that he would not get lost in the crowd.
I can still remember his first day as a little preschooler, as we watched strangers load him on a bus. My heart sank in my chest as I feared something bad would happen to my child. Nothing bad did happen, but that didn’t stop us from being afraid. We had the same knot in our stomachs when we drove off the college campus leaving him behind. He is still my son, and I am not sure I will ever stop having those feelings.
