Normally I do not mix work and private life. But today I do have to make an exception. At the airport in Brussels, a few weeks ago, I encountered an interesting blind boy who has de Morsier syndrome or Septo-optic dysplasia (SOD).
While I was checking him at the security gate he told me about his recording on You Tube. This young boy, blind from birth onwards, was affected when he was 4 years old with a congenital malformation syndrome made manifest by hypoplasia (underdevelopment) of the optic nerve and absence of the septum pellucidum (a midline part of the brain) made a big impression on me, by his vibrant spirit. He cant smell anything and has limited taste, which gives him a lot of worrying. Sometimes courage fails on him. He and his parents were forced to turn over the page and always have to move on whatever new development may bring them in an other ‘adventure’. He reminded me of other handicapped people who conquered the world with their spirit and could bring incredible artistic pleasures to the public. Often they have to face a world where touching is prohibited or where people are so afraid of physical contact. At the fouille I had to make such a contact business wise, but I also took the time to have some contact with him and his father. Limited by the time I would have loved to have some longer conversation and would have loved to hear more of his music and artistic aspirations.
Lou had in the past already managed to bring a concert for a sold out theatre to bring out the positive into the world.
The parents created a foundation with the name of their son in 2006.
After carefully considering with his mother and psychologists if it was right to make Lou his private life public, the father rightly thought this could help others as well, and I am convinced this could give both, Lou, his parents, people with the same difficulties, the opportunity to grow and to face their problems and the problems of others as well giving opportunities to find support.
The father says:
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 comfort 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.
Those writings, I am sure, can inspire many people.
Also the music of Lou can bring much to the listeners.
In the song “Lou, Je m’appelle Lou” (Lou, my name is Lou) Lou let us know that wherever he goes, he is just like us, though he thinks he only has his piano, his braille and his piano. Strangely enough he does not mention his parents who would have a lot of work with this boy. Though Lou admits he may often feel like a hermit and adversity scares him, he is really aware of the crazy world around him and us. His parents have to face all the emotions which juggle with him while each tension makes him a hedge hog.
When I met this boy very short, I did feel that he had full emotions with much wisdom, though he can have moments that he finds that life sucks and knocks him down. Life can break you down and build walls, but he is also the proof that people with a handicap have the world as much to tell as others, or sometimes even more.
He and his parents will have to fight every day while certain dreams made fade away. But those writings on the net and his artistic experiments may bring solutions to struggle against all the disordering. I do hope many may find his artistic gifts inspiring enough to support them, because likes he says the music and him may be magic.
Nobody has it his own way. Love makes you stronger. Tenderness even stronger.
I need big hugs. I need help. A hand. A laugh and a kiff. To stay positive.
We all have are dangers. everyone has challenges. Every one has pains and gains. Worries, hopes, breakings and blessings and fear of the future.
We have to stand up. and never stop loving us up. (Without end giving each other the hand.) Hold our hands, and hugs us up.
Lou, that is me, that is you.
Dutch version: Een jongen genaamd Lou
Please do find:
- Charles Bonnet Syndrome (thing) (everything2.com)
Charles Bonnet Syndrome is a neurological disorder affecting people with damage in their visual pathway — damage to their eye, optic nerve, or visual cortex. People with this syndrome have complex visual hallucinations that take place in the affected part of their visual field. It is very common, occurring in approximately one out of ten people with partial or complete blindness. Some studies have found it to be even more common in geriatric populations with visual problems.
- Day 10: What about Bob? Baby Steps or Midbrain Dysfunction? (gmogone.com)
As a vision teacher with the birth-3 population, brain dysfunction and vision are inseparable issues. The most common brain abnormality I have seen is Optic Nerve Hypoplasia or ONH. (See blindbabies below). The incidence of basic brain under/poor development in babies seems to be increasing, or the statistics suggest (do a search).
- Congenital Cystic Adenomatoid Malfunction (lisalday111711.com)
Because of my daughter’s positive attitude and research on my part I am feeling much better about this situation and instead of preparing for a funeral I am now preparing for visits in the neonatal ICU unit which is not so bad in the grand scheme of things.