Serge, the Light of my Life

This testimony, by Serge's mother, reveals a part of her life from the moment she learned about the disability of her son, until his death.  A difficult journey, a life full of pain, but also of hope.

Disability is a (bad) surprise, a real suffering.  When Serge was born, I knew nothing about disability, I rejected my child.  I refused to see him the first 10 days, my sole preoccupation was to put him in a boarding center and forget about him.  But, when I arrived to SESOBEL, it was on September 11, 2001, and when I learned the news of the terrorist attacks in the USA and the collapse of the Twin Towers, I felt ashamed of myself.  I realized that what I was going to do was unfair.  I, who wanted to hide my child while many other "normal" people were falling dead.

The first year at SESOBEL was not easy; I had to face the world, even my husband and the extended family, for whom having a disabled child was a disgrace.  I attended many meetings and training sessions to understand my son's disablility and others' disabilities too.  I learned to appreciate special institutions, especially SESOBEL, that never made me feel alone.  I remember Serge's first birthday, it was marvelous.  I felt a big joy and wanted to spread it to all the children at SESOBEL. 

Serge's sickness broke me down, the suffering was tremendous for my son and for me; then Serge was gone, in peace, wrapped with my love, and the love of his friends and all of the team of SESOBEL.  Even though Serge is not here anymore, I will always stay faithful to SESOBEL.  I pray that the world would open its heart to love and accept disabled children.

This experience taught me a lot.  Before Serge's birth, I did not know how to pray.  With my son, I discovered praying and the meaning of life, and I also discovered the essence of joy.  My Serge, was the light that shined over my life.

Sylva Lochikian, Serge's mother