Love of Angels

Down syndrome

10 MARCH 2016,
Pierre Lavi with Mrs. Lihi Lapid, an Israeli author and journalist. Photo by: Ephraim Tsfoni
Pierre Lavi with Mrs. Lihi Lapid, an Israeli author and journalist. Photo by: Ephraim Tsfoni

You know the song: "He's not heavy he's my brother," well, he's my brother and he's my daughter's uncle.
The fact that in my family we have a child with Down syndrome doesn't disturb us at all. As children we played a lot with my brother until we flew away from the nest. But though the roads were long and sometimes difficult for all of us we never neglected our brother. He's kind of an angel even though he has all kinds of disabilities.

Today, when I'm a father my perspective on life has changed and values which I always believed in have become much more important to me due to the fact that I have, should, need and want to educate my own children to become much better persons than me and to accept the other. God is my witness that I succeeded in connecting my brother with my children and especially with my eight - and - a - half - year old daughter. It seems to me that God Himself created these two angels of mine. Whenever I take my daughter and my son to visit my brother who lives with my Mom I enjoy seeing how he hugs them without limits and tells them how much he loves them. It isn't something obvious to watch it happening in front of my eyes; it shows that my work has paid off because Down syndrome people are not always easy to deal with.

When my father passed away it took some time for my brother to understand that he would never see our father again. Watching the enormous number of people who came to share their condolences with us after the funeral shocked his restricted world and made him nervous. He didn't understand why so many people were entering our home, disturbing the calm and silent atmosphere in our house which he was used to, and why our father didn't return from the hospital. Soon my brother burst out and yelled shaking the walls and our souls with his loud shout: "where is Dad"? "Where is Dad"?

I took my brother to his room, I hugged him while he was crying and while I was crying with him in my heart, and told him that our Dad wouldn't come back and that he had gone to Heaven. After a while he understood and from that moment until the last day when we were sitting and respecting our Father's death I didn't leave him and I held his hand in my palm and he kept saying: "Dad gone to Heaven".

Today, my brother still lives in his own world, with clear borders and territories but he also still lives with us and he's aware of everything even though he can't take part in many routine and regular activities with us. Trust him that if you try to penetrate his world, like open his drawer and change its order he will yell at you and won't let you do that. In my brother's case it will be very difficult for you because whenever he leaves home he locks his closet and takes the key with him grabbing it in his fist.

My daughter found the way to his heart and she doesn't feel any shame having an uncle with Down syndrome. On the contrary, she's talks about her uncle at every opportunity and describes how much she loves him and takes care of him thru plays and other activities which she does with him like when she plays soccer or even the Persian game, "Shesh Besh" (Backgammon) with him. She's like a small teacher and he's like a fresh pupil who's keen to study so when he scores he shows his happiness and so does my daughter.

That's the beauty of accepting the other and understanding the fact that they also have affections and feelings. Down syndrome like other disabilities is not a barrier to those who have it, there's no barrier on their mind or emotions, we are the ones who usually think differently and put the barrier in front of their spirit.

Two Israeli organizations: "Akim Israel" - national association for the habilitation of children or adults with intellectual disabilities, and "Shekel" - Community services for people with special needs, are leading today the change in our perception of the other along with the help of some other wonderful parents, brothers and sisters and other members of the families and of course, many volunteers.

Half a year ago I decided to create a special poster in order to raise this issue of Down syndrome and other disabilities, to print it and show it to the world. As a photographer I have started to photograph people who agreed to create the symbol of love with their fingers and to arrange their photos on the poster with my brother's image, making his own love symbol, in the middle. I'm glad that I succeed in taking photos all over the world. While doing it I decided that I will also make a movie about my brother and I found a wonderful co-director and actress who will help me to accomplish my project - my daughter.

My lesson to you is that love of an angel exists everywhere, even an angel with Down syndrome.