Hello, I am a little boy who only sees right with his heart...
Which doesn't make my parent's daily life any easier. So I'm blind and different (mentally speaking).
This blog was born in french during autumn 2003 and is now progressively being translated in your language.
New articles will therefore appear on a regular basis.
DISCLAIMER
... my apologies to the people who hadn't understood this yet, all articles on this website are created and written by myself (his dad).
Lou is currently unable to do it,, just like he is to this day unable to grasp the concept of a "computer", "internet", or to focus for a long period of time on a conversation. Only time will tell us if we manage to integrate him completely in the world in which he lives.
Therefore all stories, despite relating actual facts, are obviously biased by my interpretation of his behavior. But having known him for over five years, I don't think I'm getting it wrong.
Thank you to the "Roi Baudoin" foundation ( "Parcours hors pistes" ). The new design, hosting and translations were partially made possible by their financial support.
Many thanks to Marco Pappalardo et Laetitia Bouet for the translation.
Visits
NEW !!!
Now, thanks to an automatic translator on the French page of the « Journal of Lou », you can follow our incredible adventure with Lou in your language.
It’s here (page French).
Choose your language and, optionally, learn what Lou is now, or go back (with the archives) where it was stopped here (October 2005).
Good reading.
1. What is a blog ?
"Lou's diary" and "Letters to Lou" are "blogs", that is to say Internet Diaries with one
important feature : this kind of website ("blog") is read from bottom to top. It's just like
your old newspapers piling up in the basement : from the most recent on top, to the oldest
at the bottom. Therefore the first page will only display the latest articles. To start
your reading from the beginning, you will have to click on the archives (in the right column)
and start from the bottom of that (the articles are numbered chronologically to allow you to
easily locate the last article you read).
8. Mailing list / Supporting us
By signing up to the mailing list you allow us to measure the public's interest in Lou's website. (See Right Column) This way you will be informed of site updates, which do not happen on a regular basis. (inversely a simple email with the title "unsubscribe" is all you need to be taken off the list. No commercial use of this database will be made). THIS MAILING LIST IS PROTECTED AGAINST VIRUSES.
7. By what right ?
(By Lou's daddy.)
A series of questions the nature of this website may raise :
Do I have the right to present thoughts as if they were my son's, when he's never expressed them orally ? I think so, seeing as how his behavior speaks for himself, and after five years I've learned to decode our little boy.
Do I have the right to make his private life public ? After carefully considering this with his mom and psychologists, this is what I have to say : if some day Lou should reach the mental faculties which would allow him to read or listen to the stories about him, he will discover, as in a diary, the daily struggle we face to allow him to be a part of the world around him. I will also explain to him how much confort and support sharing our experience has brought to the many readers of this website, even if they weren't disabled or had a disabled child. I will read him some of the email testimonies I have received.
Could Lou's potential notoriety be harmful to him in any way ? We are convinced of the contrary : Lou will need others, as many disabled persons do. And if this could help other people be more welcoming towards him, then it's not only a favor I'm doing to him, but a favor I'm doing to all disabled persons.
Finally, is it healthy to earn a living telling your son's life ? Despite the fact that this website in entirely maintained by volunteers, the answer is very clear : if some day, whether by the means of a movie or a publication about Lou, I should become successful, thereby earning important sums, it seems obvious to me that besides allowing my family to live a decent life, I would dedicate this money to ensuring Lou's future who, except for a miracle, will be intellectually unable to earn a living. Because nothing is more unbearable for me than to imagine that the day we, his parents, will be no more, he could be placed in an institution.
Finally, if there is one message I'm trying to convey in my stories about Lou, it is definetely the message that he taught me by his presence : we grow rich from other people's differences. As I brought it up in one of my "letters to Lou" posted on the internet, if there is one common denominator to all of humanity's evils (exception made for accidents and natural disasters), it is surely the fear of others, of that difference which reflects our own doubts on us.
6. Copyright
... As a reminder, all texts and all pictures are the intellectual property of their author(Luc Boland). No exploitation (commercial or non-commercial), whether it be of the pictures or of the story, can be made without the written consent of the copyright holders. Thank you.
5. Why this website ?
Following a number of (positive) questions about the reason for this website's existence, I will answer you in three points :
1. First of all because everybody carries his own suffering, his own wounds, and it feels good to share them, and to see the "good in them". Lou is such a rich experience. We couldn't possibly see life the way we used to, and we want to share that.
2. Secondly because we, Lou's parents, were the witnesses of a deeply saddening scene. It happened after an information meeting at an institution for the disabled. We had come there to find out about the place. A couple with a mentally retarted 18 year old son (present in the assembly) complained about their son's behavior, his lack of progress. To the point of publicly challenging him "Isn't that right, you can't eat properly can you ?" And his polite reply : "yes". That went on for a quarter of an hour... of putting down their own child in front of an astonished audience. We were sickened by this. No way to reason them. Their wound was too deep. So if this website can help other parents to see life differently, to accept their child's difference, whatever it may be, we will be glad.
3. Finally, the last reason is, as an "artist" (scriptwriter, director, author,...) it seemed like the logical thing to do to take advantage of my abilities to deliver this peculiar testimony.
4. The handicap : ("what have I got ?")
It didn't take us longer than three weeks after you were born to figure out something was wrong.
It would take three months for us to finally get the result of yet another test, a magnetic resonance.
"Your son is suffering from Septo Optical Dysplasia. It is a very rare congenital malformation, one case in ten million ... an orphan disease. Let me explain it to you : your son is blind." (we figured that much) "He has no optical nerve, no septum..." (no what ?) "no septum : it's a membrane separating the two hemispheres of the brain." (and what is it for ?) "We don't know yet. Some children are born without a septum and go on to lead a perfectly normal life, but on the other hand it sometimes causes more or less severa mental handicaps." ( ... thank you life ...) "Ah yes, I almost forgot, we also have a good explanation as to why he is always thirsty : Lou has an under-developped hypophysis. It is frequent in children affected by this syndrome." (beg your pardon ?)
"It's a gland in the back of the brain which regulates the whole hormonal system. In Lou's case, it doesn't retain water, but that can be compensated by taking medication on a regular basis". (it's a hell of a life)
3. This only happens to others...
One child out of ten million... I was therefore the only "representative of my species" known
in Belgium in 1998. Two hundred and thirty five cases are born every year in the United States. That's how rare my disease is... They call it an orphan disease. But I'm no orphan ! Since I had to chose I thought I might as well chose them... They seemed like nice folks ! I was born on August 12, 1998
2. Introduction
Hello,
my name is Lou. I am 9 years old (5 years when this story begun). I am blind from birth, and
profoundly different in my head... My daddy decided to create this website to share with you
the slightly crazy experience of my discovery of life. Lou
