When our organization was founded ten years ago, we set out to fulfill what we perceived was a need. Hence our choice of name: Need Project. We saw that families who deal with special needs are in a unique situation, and many organizations that support families, one of which I was working for at the time, do not understand the issues they face. Being such parents ourselves, we wanted to either find or create resources that could help special needs families to thrive, promoting strong marriages, assisting people in hard times, and building reliable, resilient communities. This led us in many directions, spurring the creation of unique resources like our podcast. Interviewing experts, parents, and companies that offer support to families has allowed us to meet some incredible people and share their experiences with our audience. To date, our podcasts have been downloaded over 27,000 times, not including those who have listened to them directly on our website. Our other resources, like the local support search page and website links, have seen 4600 monthly visits on average.
While I am thankful for those numbers of visits to our website, what I am most grateful for is the reality that lies behind them. Those numbers tell us we were right; there is a need in the special needs community, and there are things we can do to help meet that need.
At the beginning of this year, we sat down to reflect on all our different initiatives, but also to look to the future. We took the time to talk with others and seek input regarding where we should be headed as a ministry, and where we could most effectively allocate our efforts. I think it was important to look at every project and resource we currently maintain. It isn't that we believe the programs we have been pursuing aren't good. Rather, it is more about deciding what we could be doing better. Where do we think we can make the biggest difference? While we came up with many great ways to help others more effectively, we want especially to invest in one project which has been on our minds since the beginning of our ministry. We believe it could be the most impactful thing we have yet done.
While parents may deal with different issues related to a specific diagnosis, there are common problems that connect all our families, marriages, kids, and the faith many of us share. We have started to conduct interviews with parents, asking questions about the struggles they face and the wisdom they have learned along their journeys. I believe we can learn from each other as a community; from failures and triumphs both. While we are unique in many respects, we are also all in this together. Since we count you as friends and family, we wanted you to be the first to see our new project, Parents to Parents. We are creating a video series in which parents share their experiences and insights on various subjects. Watch a short preview, featuring a few of my friends as they discuss their interactions with their local church:
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.
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?
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.