I went to visit her in Beit Hachlama, for myself, I realize only later, more than for her. ?“I am coping. I am even helping others. It is okay.?” So off I went to welcome her to the club you never want to join. I brought a stack of magazines about Down syndrome in the frum community.
I introduced myself ?— the conversation started off less than magically. ?“Yes, I sort of knew who you were,?” ?“Yes, I sort of knew who YOU were too.?” Then we spoke. And spoke and spoke. And I suddenly found myself feeling so very comfortable with this woman I had never met. My entrance into the world of special needs had led me to many new friends. And she was the best of the best.
I went to the shalom zachar ?— to give chizuk to the family. But I got far more than I gave. Speaking with the grandmother, the sister-in-law, the sisters. So warm, so down-to-earth, so real in their emunah that this challenge is a gift. I spoke to the Bubbie ?— we knew each other from the neighborhood ?— she asked me questions about the future. Can they do this? Will he be able to do that? Who knows, but we can try. Maybe they will be chevrusas, your boy and mine.
We went to the support group. It was so nice. We had each other; we understood each other. Our boys weren?’t always in exactly the same place, but we were always dealing with more or less the same issues. And more importantly, we understood each other?’s attitudes. Our outlook about Down syndrome, about balancing the needs of this child with the myriad of other responsibilities, about life in general, were comfortably familiar. We joked about whose kid was more floppy, we joked about lining up three rocking chairs when the rest of the kids would be out of the house, we joked about how others saw us as so-o-o-oo-o special. We knew we had gotten the best deal with these boys of ours, and if the world thought otherwise, well, their loss.
We went to the DS conference. We shared a room; we shared the long, drawn-out lunches, when the most important information was shared amongst mothers. We laughed, we cried at the pain of yet another new mother. We ate and ate and ate, and laughed at how much we ate, then we went to a lecture or two or three. We talked about the issues before us ?— which kind of educational framework, how much extra is too much extra. We laughed at others seeing us as so wonderful and we laughed at ourselves for being so human and flawed. We pulled out pictures of our princes and showed them to an ever-so-willing audience of fellow ?“queens.?”
We sent them to camp together. Oh how they loved it. Oh how we loved that they were together. We went together to camp for Visiting Day and reminded ourselves how proud we were of our sons and how much fun it was to be there, and at the same time how depressing it was ?— and we laughed and cried at the same time. We compared the punch-in-the-stomach feeling, and smiled at how cute our boys were on stage, and how we wished we weren?’t there, and we smiled some more in unadulterated pride as they sang their songs and motioned their hand motions.
We went to visit the school. The one neither one of us wanted to send our son to. We went because it was the best place in town. Everyone said so. The professionals, the Rabbanim, the parents. We agonized together. It is far. Their religious values are different from ours. There are so many harder cases here; what will our sons pick up from them? We agonized and agonized. And decided together: Hashem yaazor. They are good, caring, professional and committed to Torah values. They have a great track record of helping their students become confident, independent young adults.
Okay, take the plunge. We jumped into icy water together. The real thing, not the cocoon we had been in before. A whole school full of special kids. Oh, how it hurt.
We wanted them together, but they were put in separate classes. They fought on the bus, they fought in the school yard. How could they do that? We are such good friends. They are such good friends. Nu, we told each other, they will grow out of it.
But they won?’t. Because Chanina will never grow out of anything. Chanina will remain the boy who packed his suitcase every Friday to ?“go to yeshivah.?” Chanina will remain the boy whose dramatic play consisted of making Kiddush again and again and again and again; Chanina will remain the one who brought out pure love in countless people.
I went to the levayah ?— for myself, I knew, as much as for her. I needed to cry. Chanina embodied every positive cliché about Down syndrome you have ever heard: loving, pure, drawn to ruchniyus; he saw the person behind the mask when the rest of us hardly saw the mask. He brought out the best in everyone he touched, and he touched hundreds of lives. How could the world be without him? His levayah looked like that of the greatest of greats ?— because it was.
I went to the shiva ?— we told stories, we shared pictures, we heard again and again of the impossibility of capturing in words this precious, precious child and we heard story after story after story of pure goodness.
I didn?’t even fool myself that I went to give chizuk to the family. I went to mourn. But Chanina was still there, giving chizuk to us all ?— the memories, the stories, the funny, the heart-warming. Chanina was there ?— his love, his purity were there at the shiva. No one came out of that shiva house untouched ?— the loving touch of a 7-1/2-year-old-boy that the foolish world called ?“retarded.?” The love of a boy whose every day changed the world he lived in for the good.
This article first appeared in issue #15 of Down Syndrome Amongst Us