On this page you will find updates for non-dutch speaking friends abroad. The entries date from 1998 until 2001.
We invite visitors to sign our Guestbook for Thijs
Update: February 11th 2001,
Hi everyone,
It is time for an update on Thijs his well-being.
Last week Thijs was exactly 12,5 years old and we decided that it was party time! On Sunday February 18th about 60 people who have worked with Thijs in the last 4 years will meet each other. Everyone of them will write, draw, paint, ..., one page with impressions of their experiences with Thijs. These pages will be put together in a book that someday will turn into a memorybook, a book filled with memories of how it was when Thijs was still around, what he has meant for so many people, how he has enriched their lives.
Thijs condition has worsened in the last months. His legs are no longer able to carry his weight and his arms and hands can hardly hold the weight of his harmonica. But it is always so amazing to see how he makes the best of it and always finds alternatives. There is no day that passes without him smiling and trying to signal that he is okay and that he appreciates everything that is done for him. What more encouragement do we need to understand that it is all worth while, to understand that where we need to be is where we are right now?
This year one of my clients is a major Dutch public healthcare Insurance company. Among other things I train their employees in how to create a vision and how to find meaning in their work. Too many people in large companies feel alienated from the total scope of their work, lonely amongst their colleagues and powerless to make real change. In my introduction to Creating Shared Vision I always tell the story of Thijs and how we managed to take care of him and ourselves so many years without getting burnt out. I tell them that what keeps my wife and me going is the image of Thijs' smile and not the longing for something "that could have been or should have been". Then I invite them to rediscover what made them once smile in day to day work and what they need to do do to re-integrate it in their work.
I invite them to re-invent daydreaming, every day a couple of minutes daydreaming on what is most important for them, on what really counts for them. That is what Thijs does all the time: dreaming, just being there, that is what he tought me and so many others: where you need to be is where you are right now.
A 'wondow'gift from Andrew Campbell here
Update: April 15th 2000,
Hi Everyone,
It has been more than two years since I made a last contribution to this page to update all of you on Thijs's well-being. His health has gone up and down. We had a tuff winter with him, but we hang on. Fortunately we haven't gone through such critical moments as two years ago, and that is also - in part - the reason why I haven't updated this page for you. No news is good news, so to speak.
He has grown a lot although this length and weight are much more like a nine year old than an eleven year old boy. Two years ago he still was able to speak some small three/four word sentences and make little jokes while smiling. But that is over. The two words left for him to say -always is an asking tone- are "Mom?" and "Dad?". The only pleasure that is left for him is blowing on small whistles and on his harmonica. Due to his medication and the frequent returning epileptic attacks he can not run anymore, in fact he can't walk on his own at all. His favorite event is bathing. When he is in the water, and doesn't feel the burden of his weight, he totally relaxes and often he even falls asleep in my arms. Fortunately he can still see a little bit. He still visits his school class, but is always accompanied by somebody during classes. He doesn't learn anymore, but his classmates are always very nice to him. It seems as if still senses this. My two other children have accepted his condition. All though they don't show very much of their inner feelings about him, we know they are worried too. My wife and I try to make our family life as 'normal' as possible. We discovered that if we - as adults- act as normal as possible on Thijs his condition and don't feel embarrassed or upset in any form about Thijs, children will respond in the same way. When thijs occasionally has an attack while some friends of the other children are around, they don't get upset because we don't. We know of families in the same situation who get more and more isolated because they don't know how to deal socially with it.
I must admit that both my wife and I are always tired, because of the ongoing situation that now already lasts almost ten years. But then again, there are always those little signs of appreciation Thijs sends us. That's what keeps us going.
Sometimes there are also other signals that what we do is meaningful. Like yesterday when I saw on Dutch television a short report on the works of a Boy, named Alveiro. In 1988, 9 years old, he started to help aged people in his little village in the region of Bucaramanga in Colombia. At the age of 13 he was offered help from all over the world to build a home for the old aged. In 1999 this home was finished. 140 aged people are taken care of there and Alveiro still works there, "Something I never could have dreamed off!". Today there are other children doing the same things he did as a small boy, and they are called Guardian Angels. If children are willing to do all they can to make a person's last years of live more pleasant, whom am I - as an adult - to complain about the necessary work that must be done for a sick child that is totally depending on me? If in a country like Colombia with such high criminal rates, there still are boys like Alveiro and his Guardian Angels who are willing to do good to others, there is still hope for a better world. And in the words of Alveiro: The only really important thing is love.
Every helpless human being on this planet is entitled to receive help and support.
Sometimes I wonder why my wife and I make all these efforts and why I am working as a trainer and consultant.
This thought helps me: I discovered that I have, in a way, very selfish reasons to do the work I do. I want my children to have meaningful and healthy lives. I realized that if I want my grandchildren and their children and grandchildren to have the live I want them to have, that only can be made possible if ALL children and grandchildren on this globe can have that live. If they can't have it, my children can't have it. I know I can't help all human beings on this planet. But if I would give up, why should others continue?
Winfried
Update: February 28th 1998,
Hi everyone,
Things have been miraculous and God sure works in wondrous ways. Thijs has been much better over the last two weeks. He actually started to talk a bit, recognized us again and even walked around a bit on his own, while we thought that he would never be able to do so again. It is so amazing how one can learn to be happy with small elementary improvements! We are continuously downsizing on our wishes! But since two days it is going down over again. He has had more epileptic insults and has a higher temperature.
A month ago we thought it was a matter of a couple of days, three weeks ago we were thinking in weeks, last week we cheered up and even considered it might be several months, but since Friday we are back at a couple of weeks......
Every day we wonder what it is that still keeps him here, what kind of life-quality is left for him here? On the other side it is almost unreal that we also, more or less suddenly, are confronted with practical things like how to arrange a funeral for somebody who isn't even dead yet. Will we bury him or cremate him? What is best for him? What for the other children? Gwendolyn and Daan also ask many question about the process of passing away and being dead, being in heaven, etc.? We are as open as possible. Thanks to that attitude life for them is going quite normal. Under the circumstances they take it very well.
Three weeks ago Gwendolyn came earlier home from school, crying, because she had a kind of "flash" that Thijs had died. Normally she doesn't share so much from her inner world, but that was her way of showing that it was getting a bit too much. We all know how important it is for a seven grader to be certain where you are up against. And in this situation we don't don't now for certain when IT will happen. We all agreed that we would tell her as much as we know and that she asked whatever she wanted to ask and was entitled to get straight answers. That worked.
How do you know if you do the right thing? A whole lot of philosophic, spiritual, religious, and life issues get a high factor of reality. All those important things that are so easy to talk about with a good glass of wine in one hand and a cigar in the other hand get a whole different character when they become real-life cases. A visit to a cemetery is suddenly a whole different event than it always was.
A friend of us ( and one of Thijs' therapists) came by the other week while my wife and I were discussing three different places for Thijs to - eventually - be buried. He mentioned a place near the cemetery which he regularly visits to contemplate, which always gave him the inner rest he needed. He suggested that that particular place would be fine for Thijs. When I asked him if he would have that same feelings if one of his children was buried there, he hushed.
Reality changes when the facts change.