I spent twenty years of my life wishing he were “normal.” Imagining. Yearning. Wondering about ordinary things like—what would he be like? What would he look like? Would we get along, and what would we have in common? I tried to picture us going to the same school. I fantasized about bumping into him in the hallways and meeting up inadvertently at the water fountain. I reveled in the imagined sibling coziness of sharing snacks at recess, playing tag on the playground, and laughing out loud about our teachers.
As I got a little older I began to wonder if he would be cool, what his style would be like, and if my friends would have crushes on him like they did on my other two brothers.
I spent twenty years of my life wishing he were “normal”But growing up with Josh, my blind and severely disabled older brother, did not come with the usual perks of riding in the same carpool, playing tag, or sharing a granola bar bite-for-bite. Growing up with Josh came with, among many other emotions, a feeling of being cheated out of a sibling. Sure, he was my big brother, but due to his condition it was impossible for us to have a “normal” relationship. He couldn’t see me. Couldn’t understand me. Couldn’t have a coherent conversation with me. And couldn’t even argue with me.
As we grew up and I became more independent, he didn’t. It was hard for me to accept that he would never “get better” and learn to see or think. There I was starting to read, write, cross the street and pour myself a cup of juice—basic things that most people take for granted—and my older brother couldn’t—and wouldn’t—ever be able to do any of those things.
Instead, Josh taught himself to unscrew doorknobs and cabinet handles, climb up bookshelves, and splash barefoot in the toilets. He made lots of strange, loud noises, hurled nuts and bolts through the air at dangerous speeds, and repeatedly waved his arms around his head as if he were trying to swat a hundred flies at once.
By the time Josh turned twelve years old, his needs were so great that my parents decided to place him in a group home that would provide a 24/7 controlled environment. When I was told about his upcoming move I was both relieved and heartbroken. Even though living under the same roof with Josh was difficult, I was sure going to miss him. Plus, watching a totally helpless sibling get—from my young perspective—evicted, was not an easy pill to swallow. I felt bad for Josh, mad at G‑d, and frustrated with every aspect of the situation.
How could it be, I wondered, that a loving G‑d would do such a horrible thing to my brother? How could it be that a merciful G‑d, who can perform all sorts of amazing miracles, was refusing my simple, pure-hearted request for my brother to heal up and be normal? It didn’t make any sense to me. Therefore, I reasoned, it must be that G‑d wasn’t actually all that loving or merciful after all.
While I was busy struggling with divinity and spiritual disillusionment at the age of nine, Josh’s life was being packed up in boxes and moved out. His new “home” was a thirty-minute drive from our house, and on Sundays my family and I would pile into the car and drive out to visit him. Seeing him in his new place, among a bunch of other evicted, disfigured, disabled and generally scary-looking boys, was heart-wrenching for me. For a while I was too sad to even go inside. I would wait in the car for him to come out. But Josh didn’t seem to mind the new situation too much. This was his new home. These boys were his new friends. And this was something I was going to have to accept.
How could it be, I wondered, that a loving G‑d would do such a horrible thing to my brother? And I did. Sort of.
Life went on as usual. Our noisy house quieted down in some ways, but it was still as bustling and busy as ever. The rush of daily life with four teenagers in the house was dynamic, even deafening at times. And before I knew it, so much had changed. We were all growing up. There were bar and bat mitzvahs, driver’s tests, SATs, high school graduations, summer jobs, college graduations, weddings, and then babies!
We were all moving on and moving away, going off into the world to pursue our dreams and follow our hearts. But not much had changed in Josh’s life. There were no major milestones to celebrate. No bar mitzvah, no graduation, no driver’s license, no job. He did move into a different group home in a neighboring suburb of Chicago, but that was about it.
The six of us kids have now all grown up. Three of my siblings live in Israel, one lives in New York, and Josh and I live in Chicago. Aside from Josh, we are all busy with our lives, families, friends, and jobs. Communication with one another is infrequent and rushed. A short email every now and then, or a phone call before a holiday, has become the norm.
But being Josh’s only sibling in Chicago, I feel a deep responsibility to be there for him. I make an effort to follow in my parents’ footsteps, pile in the car on Sundays with my husband and kids, and make the trek out to the suburbs to visit him. We pick him up and take him out in nature to picnic, play, and walk arm-in-arm through big empty fields.
My kids enjoy holding his soft, delicate hands and feeding him pretzels. They are not afraid of their uncle Josh, not even when he screams loudly, shakes his arms, or waves his hands around his head in hot pursuit of a hundred invisible flies. They have learned to accept and understand his differences, and they have become sensitive to people with disabilities.
I have learned to slow down and appreciate the little things, especially the little triumphs my kids make and the ways they play with each other. My husband has learned to take his brother-in-law, a man older than himself, to the bathroom, respectfully and humbly.
My kids enjoy holding his soft, delicate hands. They are not afraid of their uncle Josh, not even when he screams loudlyReflecting on my Sundays with Josh, I find that in many ways I actually have “more” of a relationship with Josh than with my normal siblings. Who else can I walk with arm-in-arm through the forest at a snail’s pace? Who else can I sit with silently and enjoy the sound of the chirping birds and the rustling leaves? Who else wants to sit on the ground and eat a picnic of trail mix and leftover Shabbat food with me and my kids? Which other sibling of mine has this kind of time? And if they did, which one of them would ever want to spend it in this way?
No, instead we use our ability to speak—to rush through a trivial conversation. We use our gift of vision to look at each other and comment on our superficial appearances. But with Josh, there is so much more than words. So much more than what meets the eye. It’s pure arm-in-arm, hand-in-hand, silent, sincere, spiritual togetherness. There is nobody in the world, other than Josh, with whom I have such a relationship. It's the most grounding and profound relationship that I know.
So I no longer wonder what life would be like if Josh were “normal.” I have four other siblings, and I know from them that if Josh were normal he too would probably be too busy with work and family to spend quality time with me, and therefore we wouldn’t really have much to do with each other. I deeply appreciate our special connection, and I see G‑d’s blessing in it. After so many difficult years of wishing I could change reality, I finally accept it with love and see its purpose and beauty. I have redefined my definition of normal. And most importantly, I see that for all those years, I was the one who couldn’t see. Josh has remained constant in so many ways. It was I who was living in my own world, unable to communicate with him. It was I who made it impossible to have a relationship. Josh was always there.
Thank G‑d for giving sight to the blind. That He opened my eyes before it was too late.
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