Being Eran’s Sister

Being Eran’s Sister

Monday, March 3rd, 2008


In honor of his first Yahrzeit Memorial Service, at the Tel-Aviv Museum
Good evening to all.
When I was a little girl, I wanted to be a doctor. More accurately, a brain surgeon.
I hoped that I would become smart enough to invent some kind of operation that could fix my little brother Eran, who was born with severe brain damage that left him autistic and retarded.
When I was a bit older, I wanted to become a psychologist. It may be that I had come to terms with the fact that Eran could not be ‘fixed’, or simply that something had changed within me. In any case, I now understood that I simply wanted to help people to deal with difficult challenges that life placed before them.
Life with a brother like Eran taught me, even as a child, that life is made up of these challenges. Challenges that test our humanity and confront us on a daily basis with the question: “What is really important”?
Eran was my little brother, born when I was almost 5 years old. I was the firstborn in my family. I couldn’t wait to have a brother – one who would look like me, who would talk and laugh with me. As his older sister I would look after him – but he would look after me too. We would be real siblings in every sense of the word.
Siblings have a recognized position in ‘normal families’: they have fun together, fight a bit but love each other nonetheless, they conspire to make life difficult for their parents, they play games together – games like Lego, Monopoly, Catch and Hide-and-seek. And then, finally, siblings grow up and mature together.
But I did not have any of these things. Instead, I was blessed with a special younger brother – a brother whom it was a conscious choice to love, not an obvious one.
When a child like Eran is born, the term ‘normal family’ ceases to be relevant.
Roles and functions inside the family change and mine, from being a normal older sister, became one that demanded of me great responsibility, understanding, sensitivity and endless patience.
I remember myself as a young girl, going out with Eran to the playground, walking hand in hand on the street, always watching to make sure he wouldn’t dash into the middle of the road, or run away, or get lost, always keeping an eye on him to make sure that nothing should happen to him.
I was asked once if I was ashamed to be seen with him. I never was.
Feelings of shame and embarrassment are often painful topics when speaking of special children like Eran, but in my family, there was no place for these kinds of feelings. In my family, we never had feelings of shame we had to hide away, because we had made a decision to love and accept Eran as he was. It was as simple as that.
So I never felt ashamed of my Erani and I was invariably proud of every accomplishment – no matter how small it appeared – that he achieved, and every milestone he reached.
You see, for a child like Eran, accomplishments are not measured by a report card at the end of a school year, nor through high marks or good grades or sports triumphs or anything of that sort.
Instead, Eran’s accomplishments were small steps that were only reached after a long, arduous process of hard work; accomplishments like learning to swallow lumpy-textured food, to feed himself with a spoon, to drink from a cup and set it down on the table without dropping it, to look directly at someone who was speaking to him.
Eran never spoke to me or said a single word. But through his unfathomable silence, he taught me so much, infusing my life with a great deal of understanding and significance.
For me, my Eran was a pair of blue eyes and rosy, red lips. The lips of a mouth that never said anything, and eyes that conveyed so much. The look in Eran’s eyes always showed me what he was feeling: there was one look for happiness, another for sadness, and a ranges of gazes and glances to show understanding and listening.
The communication between us was such a live, constant thing: full of joy and laughter, poetry and tangible hugs. And now, when he is no longer with us, I have silence and memories. I am left with great pain and with endless tears.
My Erani – I try to hold onto the pictures of us together, to immerse myself in the images and relive each moment. I try to hear your voice humming, to feel your hands on mine directing my actions, to remember those moments when you made laugh with the amusing things you did, and to enjoy the sweet look seen from your blue eyes.
One of my best experiences with Eran was when our parents flew to the States for 8 months. 8 months in which I was the ‘responsible grownup’ for Eran.
During that time my husband Ron and I made sure to bring Eran home weekly, just like he was used to. Those 8 months contained within them so many magical moments of happiness. Every time I would come to the school to pick him up, I would park the car far from the entrance.
As soon as you saw me at the door to your classroom you would get up and smile at me, stretch out a hand or hug me and together we would go to the car that you could always – despite the fact that you have been classified as ‘retarded’ – recognize and pick out from all the other parked cars.
I so enjoyed our hours together – you always knew how to surprise me. I remember one day when you got up in the middle of dinner and went to the refrigerator. You opened it and began searching for something. I asked you whether you wanted the Milki pudding that you loved so much but you just continued to search. Finally, you took out a jar of green olives. I looked at you, amazed, and asked, “What Eran, you like olives?” I took out a few and handed them to you and you ate them with delight. The following day I asked your teacher if you ate olives at school and she said that you do, and that you love them… my smart boy.
Maybe in terms of IQ measurements you are defined as severely delayed but in my eyes you need a great deal of intelligence to understand that perhaps the refrigerator might hold something that you like so much, and then to get up and search for it.
There were also moments that were not so easy during those 8 months. One of those was the parents’ meeting in which your teacher said that you were very hyperactive and that might need to be dealt with. I was so angry and hurt for your sake. Yes, it’s true that my Eran loves to run and swim and ride a bicycle, and he doesn’t especially enjoy sitting and stringing beads – so what? That is who and what he is….
And then there were the epileptic seizures that worried me so and caused me such anguish. Because when something hurt you I could feel it inside my own body, strong and burning.
My Erani – how difficult and painful it is to remember those moments and know that they will never be again.
Now I am already grown, but I am not the doctor or psychologist that I planned to become. Today I am writing my doctoral dissertation in the field of special education, researching the development of acclimation of students with special needs.
This year I also began to teach an introductory course in special education at the university. One of the main chapters deals with the ways a family copes with a special needs child.  A week before I was slated to teach this unit, I already began to get emotional. I knew it would not be simple for me to give such a lesson.
I debated what to do. How to begin? What to tell? How to teach the students the ‘theoretical’ material combined with the ‘practical’ side that I knew from my own experience, and how to balance the two in the classroom?
I entered the classroom – 25 students were sitting across from me, waiting.
“Today’s lesson will be a bit different,” I said, as I drew a deep breath. “This lesson I will not give over as a lecturer in the course, but as the sister of Eran who died a year ago and was a boy with severe disabilities and autism.” At this point my eyes were already brimming with tears.
One more deep breath – breathing in deeply so as not to fall apart in front of them at that very moment. 25 students sitting across from me looking at me dumbstruck, with disbelief. Some of them may have thought that the tears rose in my eyes because to be the sister of a child like Eran is a painful and difficult experience. But the tears that welled in my eyes at that moment were because I missed him so. I was overwhelmed by the aching hurt in my heart for my beloved brother who is not with me anymore.   All my life I wondered who would take care of you, my Eran, after I passed on. Who would nurture you, love you, hug and kiss you. But in the end it was I who was left alone without you.
Who would have believed it – but the greatest challenge that Eran set for me was not having to deal with his existence but his death and leaving us at such a young age.
They say that every time we embark on a journey it changes us and we return altered by the experience –my own personal journey toward Eran is not yet over, and I think it never will be.   I tread the way in sorrow, every footstep accompanied by tears and pain – but I have no choice: I am compelled to continue onwards.
I carry Eran with me in everything I do.
My brother – you who never said a word to me but, in your great silence, helped shape me into who I am.
I will love you forever.
I miss you so much.
Your sister, Nitzan