Supporting families with special needs
I have been struggling with the issue of gratitude lately. How can we be grateful, or why should we, in times when circumstances seem so harsh? I am not talking about easy situations. If someone gives me money it is easy to be grateful. I talked with a co-worker who had been on a trip to Europe and had her wallet stolen on the subway. A bystander who saw it all happen walked up to her and gave her a hundred dollars so she could get to her hotel. In that situation it would be easy to be grateful. I am talking about the hard times, not just times when our blessings are obvious. I experience moments of gratefulness; what I'm after is a life of gratefulness. What I want for myself is a sustained posture of gratitude for the blessings I have been given. I don't expect to be some weird, unfazed, smiling robot without feelings; there are certainly times when my life seems hard and overwhelming. Taking the whole of my life into account, though, I am grateful for the person God has made me, and grateful for the people He has brought into my life. Once I have this general attitude, I find I have to deal with another important question: how do I pass it on to my children and others in my life? What parent hasn't tried to tell their children about the hardships they faced when they were a child? We all walked to school uphill both ways. These days, we've probably made a few changes to that clichéd line: we remind our kids that that we didn't have twenty-four hour TV or Internet. We didn't have video games, (well, other than maybe the local arcade's copy of Pac-Man.) We had to go outside! In the end, of course, all the speeches and stern talking-to's don't make as much of an impact as the example of a life lived.
My family and I have been to places where poverty makes it clear how blessed we are. We have seen how little others have in comparison; we have worked building houses for the poor in Mexico and helped with orphans in Guatemala, and it has made us grateful for our blessings. In my own life, this sense of gratitude has always lasted for a season. Sustaining it is what I really want.
As I think about this it brings to mind several stories I have heard recently. A news story about a family who had a child born with many issues stuck with me. They had been in and out of hospitals most of the time since the baby had been born. As the story unfolded it turned from the hardship of his youth to the triumph of his adulthood. While any number of things had happened along the way that many would consider setbacks, this young man saw those moments as challenges to overcome. Every time someone said he would never do something, he took it as a personal challenge. The best line from this story came from the young man's father. He explained that this was not the life he would have planned for himself, but looking back he wouldn't change it. A second story had a similar impact on me; I posted a link to that video on our Facebook page. A family tells the story of their son's life, the life of a young man born without arms. This young man is matter of fact about his life and his determination. He confidently asserts that there's nothing he can't do in life. There are just things he hasn't done yet.
It was one of those nights.While the family slept, I decided to take advantage of the silence and get some work done.In the midst of my efforts, I turned on the television and stumbled across a movie from the 1995:Mr. Holland’s Opus.
Have you seen it?It’s always interesting to watch something a second time – especially when your personal circumstances have changed since your initial viewing.You often pick up on things that may have once gone right over your head.
Especially if you’re seeing something a second time for the first time as a parent of a child with special needs.
If you’re not familiar with the film, it featured Richard Dreyfuss playing the role of a newly married musician with a dream of being a great American composer. He wants to get off the road and concentrate on composition, so he takes a job as a high school music teacher.
As often happens, his job begins taking up more of his time than he wants to give. He becomes frustrated.His grand plan is being ruined!Then his wife gets pregnant and the pressures really start to mount.
Time and time again, he tries to keep his dream alive, but the job and his family demand all of him and the dream appears to be slipping away.
So, like many fathers, he begins to fantasize that he’ll be able to see the fulfillment of his dashed dreams in the life if his growing child.He even names the son after his favorite musician - just to be sure there’s no mistake what his life will hold.
I recently came across an article about a family that had made what many consider to be dramatically controversial decisions about their daughter. Young Ashley is severely disabled. According to her parents, in an effort to improve her care and protect her in the years to come, they authorized a hysterectomy and also removed her breast buds and appendix. This all happened three years ago. They also currently have her on high doses of estrogen to minimize physical growth. It is estimated she will grow to be about 4’ 5” tall at full maturity.
[See story http://www.foxnews.com/story/0,2933,241279,00.html]
The reason this came up now is that the doctors involved wrote a paper about it for a medical journal. Predictably, reaction has been passionate and mixed. So much was said about this that the parents finally wrote a response and posted it on the internet.
[See: http://ashleytreatment.spaces.live.com/]
Over the last fifteen years I have had the wonderful pleasure of meeting many people who are doing wonderful work with and on behalf of those with special needs. Many of them are working in very unique ways or areas to make life better for those with special needs. All of them speak of the vision they have or the experiences they themselves have had that gives them the drive to make a difference. These organizations are as unique as each person, and while their goals are different I have wondered if there is one common theme or statement which all of us are working on. Not a direct mission statement for each group but an over arching statement of the ultimate goal which we all have been uniquely gifted to address. I see this like the metaphor of many oars in the water rowing in the same direction. Is there something we can all state as the ultimate result of our work? It can’t be something small it has to be a goal, which we cannot reach on our own, it has to be something that even with all of us working together, still requires God’s intervention to accomplish.
The difficultly in developing this goal, may be the very diversity of the people we serve. For example we have created Sunday school classes for every age in our church, our church serves nursery to adults every week. Despite having these programs there are those in our church who don’t want their family members in our classes. They come every week and sit in the service or out in the lobby viewing area or continue to work with the youth department to have their child go to the standard Sunday school options. I have felt a twinge of hurt at times as they pass our room knowing we want to serve them, but I also need to understand that involvement in our program is not the ultimate goal. Having a different classroom to many, could be only a stopgap measure on the road to an ultimately better scenario.
Thank goodness the elections are over! I don’t think I could handle another commercial telling me how one candidate or the other was too extreme. As if there is a “mild” extreme.
I don’t know about you, but it sure was hard to get a real sense of a candidate’s views based on television portrayals alone. For instance, I saw one commercial that claimed a candidate wanted to “rip up” the Constitution. The very next commercial stated that the same candidate wanted to “get back to” the Constitution.
Then there were the infamous robo calls. My phone practically rang off the hook in the weeks leading up to the election. In each call, someone practically begged me to vote for a particular candidate, and based on what, a mere phone call? It didn’t take long to start screening our calls through the answering machine. Being bombarded with ads on TV was bad enough; I didn’t want to hear more of them on the phone all day long, either. I think I would have started pulling my hair out.
I heard that a record number of dollars were spent on this recent election. An estimated $394 million was squandered on advertising alone. In the California governor’s race, one of the candidates dished out $160 million, only to lose. Does that sound completely outrageous to you? It does to me. And why would someone spend $160 million in an attempt to win a job that pays around $250,000 a year to begin with?
It pains me to see so much money being burned to support a person’s ego. I’m not saying all the candidates are egomaniacs, but it just does not make any sense to dump so much money down the drain in an attempt to procure a job that lasts 2-6 years, at which point the process starts all over again! I guess it shows to what lengths those who crave power are willing to go.
