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Eggs, legs, and the miracle cure

When my kid was about three and still unable to walk my grandmother told me a story of when my cousin was about two years old and wasn't walking yet, they rubbed egg whites on her legs and she started walking. Well I didn't take that very well. If I remember right, I unloaded on her telling her that egg whites were not going to make my child with cerebral palsy walk. I probably should have been nicer to my grandmother because she's from Guatemala and this was her way of trying to help. But it got me thinking of all the miracle cures and slick brochures telling me how they are going to cure my child. What angers me the most is the fact that these so called cures are taking advantage of what is basic to all parents; the fact that we want the best for our child. Of course we hope and pray for that miracle. And I can't say for sure that all of the multi-level marketing claims are false, but I hate the fact that I can't be sure. And as a parent of a special needs child who has enough medical expenses already, I can't afford to try them all. Why they take advantage of those already vulnerable I can't imagine. I don't understand why the medical establishment can't be quicker to check out their claims. But one thing I do know. Somebody's getting rich, and it "ain't" the special needs parents.

Don’t Do Us Any More Favors

I’ve been struggling to keep my cool while composing this month’s column. You’ll soon understand why.
By now you’ve likely heard or read the story of the 7-year-old Russian boy whose American adoptive mother packed him on a plane and sent him on his way (alone) with a note tucked into his pocket that read in part:
After giving my best to this child, I am sorry to say that for the safety of my family, friends and myself, I no longer wish to parent this child. As he is a Russian national, I am returning him to your guardianship and would like the adoption disannulled.
See story: http://www.foxnews.com/story/0,2933,590863,00.html
Now, there are always two sides to every story. The woman in question, Torry Hansen, suggests she was never informed of the boy’s mental instability. Still, one has to wonder why she decided to abandon the boy when she just as easily could have pursued numerous other legal options, all of which would have given her the relief she so desperately sought.
Yet, the thing that angers me the most is the damage this incident has done to the families who are working through similar issues with both adopted and natural born children.

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Disappointment

When I was a much younger man. I was fortunate enough to be in a job that was in demand. I had many opportunities to get in with companies that needed a new skill, which I happen to be blessed enough to have learned. My problem was not in having a job, but picking a company to work for. All of the companies would put on a good show when they were talking to me about working for them. Some seemed like good companies but I had no real system for figuring out if I should work for them or not. I would listen and make a decision mostly based on how nice they seemed to be. My way of picking was not always right. While not all of them worked out great, only one of them was really horrible! The company, which I found out after I was hired, was a mess. The two owners did not like each other, and the position I was in was the middleman. I regretted making the choice to work there from the first week. Which is probably why I only lasted six months in that job. When I make a decision like that I really get down on myself. I start to retrace what lead up to the choice I made, looking at each step, or scrutinizing how I should have made a different decision. Whether it is decisions about my kids or work I can really dwell on the negatives. That work place fiasco happened over fifteen years ago, yet I bring it up in my mind from time to time just to rehash what I did wrong. I know the Bible tells me that God forgives me my transgressions, but I don’t forgive myself.

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Doctors and Dreams

Over the years, my family has interacted with countless medical professionals. They've come in all shapes, sizes and specialties. We've encountered them throughout the eleven surgeries of our son, the twice-weekly physical and occupational therapy sessions ?not to mention the routine doctor visits for check-ups and treatment of various illnesses.

We’ve had some real ?winners?over the years. And by ?winners?I’mtalking about those who made me wish it were still socially acceptable to challenge someone to a duel. Metaphorically, of course.

The legendary comedian George Carlin once said that somewhere out there is the world’s worst doctor ?and somebody has an appointment with him tomorrow. It might be me.

For example, I might have already mentioned the doctor who gave us our son’s initial diagnosis. I don’t even remember his real name - I just affectionately call him ?Doctor Death?.

This guy delivered the most devastating news of our lives with all the bedside manor of a Mack truck. To this day, I can see his exam room and I can remember sitting in the chair as he talked to us so callously about our beloved son.

Over the years, I’ve carried that hurt with me into most of our dealings with other physicians. Unfortunately, some of these doctors and therapists have reinforced my misgivings about the medical profession.

I wondered how they had managed to make it through years of working with parents of disabled children without someone ever telling them how awful and devastating their bedside manner was.

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Cure for the Cynic

Ok, I will admit it. I am pretty cynical. As I have gotten older, I have found myself yelling at the evening news more and more. I read about disabilities and services for those with special needs and I come away more and more jaded. I don’t mean to bring anybody down but does anybody think our society’s attitude towards disability is getting better? And that doesn’t even get into the way those with disabilities interact with services that already exist. From what I can tell, services are costly, and since budgets are stretched everywhere people want to cut services. What I really don’t understand is how the neediest among us are the first to lose services every time! If I look around, I can get myself into a real funk over the state of things. I can blame the current administration or my elected officials; I can accuse them of abandoning us. I can blame the last forty years of Presidents and Congresses, but in the end is that where the blame really lies? I don’t think I am alone in this. I think more and more of us are pessimistic and have become downright sour when we reflect on where we are and where we are going. This forces me to look somewhere new for answers. Before welfare or disability insurance or Social Security were even a gleam in the eye of Franklin Roosevelt, how did anyone in need get help? In those days, we cared for each other in the church. I know things weren’t perfect, but “God’s people” led the way in caring for the needy, and it was their churches that fed the hungry and visited the sick. The church used to be the epicenter of local communities, in some sense the envy of the world. In the name of God we helped the poor and the downtrodden without acclaim or fanfare, because we believed it was the calling of God. It was the mission of the church to feed and clothe and care for all. Jesus commanded us to do so, even to the point of asserting that those who neglect to help the needy do not know God (see Matt. 25 31-46). In the old days, when a neighbor was in need, people stepped up and helped. They raised a barn; they brought food when someone was sick; they comforted, prayed, even corrected. At least this was an ideal they aspired to. Yes it was considered their “Christian” duty, but it was also the right thing to do. They knew that if the Church didn’t fill such needs, no one would, and if they were ever in need it would only be the kindness of others that they could count on.

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