FILLING THE CANVAS WITH COLOR

As told to Leah Gebber

Courtesy of Family First Magazine

Eden was three and a half years old and still not talking.  A few words here and there and plenty of garbled nonsense.

There were other things, too, that made me worried.  The way she didn’t make eye contact.  The way she sat, staring into space, for endless hours.  The sack of toys that she carried with her wherever we went; if I attempted to remove it, to put it away, she would cry and kick and bang her head against the wall.  She shrugged off my touch, ran away from hugs and kisses.  The bubble that surrounded her was swiftly congealing, hardening.  Eden was becoming the sole inhabitant of the universe that she had created.

It’s a feeling that makes you breathless with agony, watching your child and knowing that all is not right.  It’s a dark, dark place to be.

At times I would kneel down beside her, grab both her hands in my own, and force her to look into my eyes.  “Now smile, Eden,” I commanded. “Smile”.  She would look down at the floor and, for all they say about lack of communication and social skills, I think she sensed my distress and she would begin to cry.  And then I would feel bad, horrible, and I would take her in my arms, but she would wiggle away because she did not like to be touched.  And then I, too, would begin to cry.

I won’t go into the details of the long and involved process of testing and diagnosis.  You go to the doctor and she acts like a normal little girl, behaving in a way she hasn’t for months.  And then you walk out of the pediatrician’s office and she begins babbling and flapping her arms all the way home.  The doctor, of course, tells you that you’ve been reading too many magazines, and makes you wonder if you yourself are normal.  “Maybe you’re suffering from paranoia?” he asks kindly.

So you find another doctor, or maybe a psychologist, and they refer you on and no one wants to tell you anything for sure. You come armed with report after report to the developmental specialist and then she tells you…

Eden was diagnosed with PDD-NOS, Pervasive Developmental Delay—Not Otherwise Specified.  That means she doesn’t have Rett’s syndrome and she doesn’t have Asperger’s syndrome either.  She has PDD, a condition on the autism spectrum.

It’s a devastating diagnosis.

We went to the Rav.  Even though Moshe, my husband, does not keep Shabbat as he should, he agreed to come with me.  The Rav heard our story, looked at us, and shook his head.  “Who can fathom the ways of Heaven?” he said.  “So, you have a choice.”

We waited, impatient to hear.

“Either you deal with it, or you don’t deal with it.”

So harsh.  Inside, I could feel my soul shrivel.

He lowered his voice and began to explain.

“You can live each day mourning for the child you were not given, that perfect child who knows how to talk and smile and will kiss you good night.  But what will that give you?  A life of pain and sadness.  Seven days of shiva is enough, why spend all your life like that?”

“Or,” he said, “you can cherish the child that you were given.  You can find her strengths, help her with her weaknesses, and rejoice in every smile that she gives you, every time she looks you in the eye, every small accomplishment.”

“It’s your choice.  When you make that choice, be aware that it will change every moment of your life.  But it won’t be easy.”  He tapped the side of his head.  “You need to work on rewiring those neurons up there.  You must keep telling yourself, this is a gift, this child is a gift, and I want to live a life of joy.”

We walked out of the Rav’s house and got into the car.  Moshe drove and drove in silence, and I did not ask where he was going.  He stopped by the beach in Netanya.  It was cold that day, the wind was blowing off the sea, and I wrapped my woolen shawl around me.

Moshe got out of the car and slammed the door.  He ran down the path onto the packed sand.  He stooped to pickup a large, round stone and, bending back, threw the stone high over his head.  It landed in the sea and was swallowed up by the waves.  He scooped up another stone and threw; again and again, throwing the stones long and hard, until they disappeared.  I stood there, watching him, for a long, long time.

When I sensed his energy waning, I walked up to him.  “Moshe.”

He didn’t look at me.

“Moshe.”

He turned to face me, and I saw the tears streaming down his cheeks.

“Why,” he whispered.  “Why? She was my pride and joy.  My little girl.”

I shook my head.  There were no words I could offer him, no comfort.

Somehow, though, his grief absolved me of my own.  That’s not to say I did not have my down times, times when voices in my head raged and battled and wanted to give up.  To walk out the door and leave my life behind.  Somehow, I always stayed.

The speech therapist helped me, too.

“Ever heard of Rembrandt?” she asked me as we finished our very first therapy session.

I nodded.

“Before he began painting his masterpieces, he took the canvas and painted it black.  All black.  Think about it.”

I thought about it.  Was I ready to put down the black paint and fill the canvas with color?  Was I ready to heed the Rav’s advice?

A few weeks later, Moshe had to go away for a week on business.  He returned med-afternoon, exhausted from his flight, and sank down on the couch.  Eden appeared.  She scrambled up onto the couch, climbed up onto her father, and nestled against him, laying her cheek on his shoulder.

Eden had missed her Abba.  She loved him.  She was glad he was home.

The brush was dipped into color.  My painting had begun.

For eight years, G-d did not grant us another child.  That was very hard at first.  But then I thought about it, and I realized that G-d was giving me a message: concentrate on Eden.  Give her your soul, your time, your life.

So that is what I did.  I bought her beautiful clothes, spent time grooming her and doing her hair so that the other children would like her, accept her.  I taught her how to jump rope, so that she could play with the other children in the park.  I found a sweet girl whom I invited over, baked cookies with, played games with, so that Eden would feel like she had a friend.

I took her to therapies, social skills group, fought the education department to fund her special educational needs, and then fought the school for her to have a chance to integrate in the class.

I gave hr my neshama.  And, like the Rav said, when you look for nachas, you will find it, in the smallest of things.  The colors on my canvas spread.

When Eden was six, enrolled in the special-needs class within a regular school, I went back to work.  What could I do?  I had no special pieces of paper, no fancy letters after my name.  I was a secretary, plain and simple.  But Hashem decreed I find a job in the Ministry of Education, Department of Special Needs.

I helped parents with their applications.  I made sure that they had all the forms and certificates and reports that they needed, which is not a simple task.  But I did more than that.  I was there for them.  I listened and I sympathized and many times I sat at my desk, wiping the tears from my eyes as mothers cried over the phone line to me.  “What will be?” they asked me.  “What will be with this child?”

“You will see nachas from her,” I promised.  “You will yet see nachas.”

It was around that time that I found out that I was going to have another baby.  Many people say that autism has its roots in the genes, and I was frightened of the genes I was passing on.  I had Eden, true, and I was so proud of her progress.  And yet, the thought of once again passing through that corridor of darkness filled me with dread.

And I won’t even know, I thought.  Eden was diagnosed when she was three.  How could I bear three years of suspense until I knew that this baby would be normal?

The pregnancy passed quickly and soon I was there, in the labor ward, being presented with a  squalling bundle that was my very own.  As I lay there, holding my tiny son in my arms, I suddenly realized what I had been through, how far I had come.  Black hair, black eyes that screwed up tight, tight, tight, as he wailed.  When I held him close, he grew calm and I, too, grew calm.

There was a religious woman in the bed next to me.  We got to talking.  “I want to thank Hashem for this gift,” I told hr, looking at the baby’s perfect features, at his purity.

She leaned over and took her siddur from the night table.  She flipped through the pages.

“Here,” she said eventually.  “There is a custom to say this prayer when you have a new baby.”

She handed me the siddur and I looked down at the words.

“Nishmat kol chai tevarech et Shimcha Hashem Elokeinu—The soul of every being shall bless Your name, Hashem our G-d.”

I thought of the baby in my arms,  I thought of Eden, so guileless, so pure.  Yes, I thought, the soul of every being—the baby, no matter what might be, and Eden and me and even my Moshe, G-d bless him, running out on Friday night to his friends to have a drink and play backgammon—we all bless G-d and thank Him.

I said the prayer slowly.  The words resonated deep within my heart.

When I finished, my cell phone rang.  I pushed the button and heard Eden’s voice.

“Eden! My sweet neshama!  How are you?”

N  “Oh, Ima!  Ima!  Mazel Tov!  A boy!  I am so happy.”

For any other child, these would be ordinary words.  But from my Eden, they were words of light and hope and vibrant color.