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Re-Defining Normal

Re-Defining Normal

My Brother Josh

The author with her brother
The author with her brother

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.

The author's daughter with her brother
The author's daughter with her brother

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.

Ariella Sunny Levi is a mother of four who has returned to her roots in Chicago after living in Israel for four years. She is a fourth-degree black belt in taekwondo, and hopes to help empower women both physically and spiritually through her martial arts classes and inspirational writing.
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ruth housman marshfield hills, ma November 14, 2012

re defining Normal I think we're all headed this way, in terms of the title of this beautiful article, about what is, normal? My life is not normal in that what I am being HIT with at every turn is the visible acts of what we call Divine Providence, so I know, all these children, all children, are here for a reason and we need them all. We need everyone, And what is normal is going to take a nose dive when we all experience a major opening of consciousness married to conscience. It's happening in the NOW, and the OW of this transition is preventing people largely from seeing what is so totally visible, in a record I am keeping, and that others too are keeping, as in the Small Miracles books. The document speaks for itself. And speaks for G_d, and if G_d has chosen to go "under" in this way, that's how it is, allowing each of us to experience the Wonder, first hand. Reply

Hila November 13, 2012

Ariella its amazingggg Hey Ariella, its Hila... i read your touching story and just want to tell you that Jhosh sounds like the coolest brother ever!! Reply

Kathy November 13, 2012

complicated feelings about this I love your feelings about your brother - thank G-d he has you. But how is his quality of life on the days other than Sundays? I mean no disrespect by this question. Reply

Eric holliston, MA March 27, 2012

Josh Your story about Josh touched me deeply. I am sitting here with tears in my eyes thinking about my wonderful daughter with developmental delays and issues. Knowing she will never be "normal" Every day she brings Light into our lives. Sometimes I do not see the beauty and joy she brings into this world. It is easy to focus on what is missing - thank you for opening my eyes! Reply

ruth housman marshfield hills, ma March 25, 2012

what is borne It is hard to encounter a baby, born to a family, that really yearns for a baby who will speak, who will learn, who will love them, who will do all the things, most babies do, and anything wrong, whether it be physical, as in a deformity, or within, tears at the parents, and usual it's about anguish, and an entirely new dimension of coping for them, learning to love for them, and an experience they most often did not bargain for as it is very hard, under any circumstances to raise a child.

These days there are new ethical choices to be made, as many genetic problems can be detected in utero, and so very hard and painful decisions are made, to bear the child, or not. And who is to say, to any parent, that either decision is right or wrong. We cannot sit in judgment. We know that all children teach us something and when they are born, we learn lessons from them, and many of these children are delightful as they are, and teach us something deep about love itself. Reply

Mr. Meir Weiss March 25, 2012

i am reposting on my twitter acct it is worth it kosher and JOYOUS PESACH/ REDEMPTION GEULA TO everyone :) Reply

Faith Horowsky omg, amazing! March 23, 2012

wahoo!!! :) wow! how can you be such a happy lady, and go out with him, while going blank about him being your brother when people laugh at you? Reply

Miss shterna dugan via March 13, 2012

wow! I'm exactly looking through this on friendship circle!! That's amazing!! May you alwayse see success in all you do! Thanks for everything you've done for me in TM School, too!! :) Reply

Anonymous palo alto, CA January 13, 2012

something to share... i volunteer with kids with special needs.
i do my job once a week, plus every second sunday of the month, and sometimes in other places.
if ill get a phone call from my boss whenever that will be, i will go.
my freinds take me as someone who loves kids with special needs, and the one that volunteers "around the clock..."
but i know,
it takes time, effort, understanding, and it's exausting.
phisically and emoyionaly.
i meen, i really, truly love thiose kids and adults, and im glad i spend the time i spend with them, but it's exausting...
and i think the ones that have those siblings, that are closs to them, are the "specialist", because they KNOW how to eccept, not only once a week, or 5, 6 , 7 mazimumm 10 times a month.
but 24/7.
thats the real "around the clock..."
so- GO SUNNY!! Reply

ruth housman marshfield hills, ma November 14, 2011

what is truly difficult is that society, our Humane Society, has not yet caught up with the needs of parents and caregivers to know their children will be safe and lovingly cared for after they are gone, or when these children are older, and no longer eligible for programs funded only until they "come of age".

I have had such conversations with friends who have brother or sisters who are limited in their ability to function outside a protected environment. There is much heartbreak here and a need for change in terms of loving, affordable, long term planning. Reply

Chani Spero chicago, il November 14, 2011

incredible!! you continue to amaze and inspire me in every thing you do! Reply

S. Bloomenkranz Chicago, IL February 3, 2011

thank you Thank you for giving us insight. I remember Josh well from the early Keshet days and always remember a sister being 'around'. As staff, we know the siblings have feelings to contend with, but we don't realize just how deep and sophisticated your thoughts and feelings are at that young age. Hashem should give you strength to continue these visits while raising your children! Reply

Susan Spokane, wa January 18, 2011

My Brother I just read your story and I thought I was reading my own life. It made me happy and sad to know that someone else lived and still lives the same way that I do. My brother is one year older and when I drive him home on Sunday night I tell him things I wouldn't tell anyone else. He has no speech so I know he wont tell my secrets. I also have two sisters and I know that they don't share the same bond with him that I do. I to would wonder why he would never be normal but who really knows what normal is. Thank you so much for sharing you life with us. Reply

miriam fishman los angeales, ca December 26, 2010

thank you so much for sharing; I was so touched and have shared your article. It must have been very painful for your parents to move Joshe to the group home, though it was clearly best for him and and your entire family. Thank g-d there is a good place for him, to protect him and maximize the abilities he has. You and your family are the brightest diamond for him now. Reply

Anonymous chicago, il December 23, 2010

wow! you are an amazing writer!!!! it was an amazing story that we all can learn from Reply

Ilana Lipman Woodmere, NY December 23, 2010

My daughter Thank you for a most touching,inspiring and honest article. I have a daughter who is also blind and developmentally delayed. She is 20 and still lives at home with us. She has two older brothers and a sister-in-law. Not only has she brought us all tremendous clarity but she like your own children has motivated us all to become better. Her blindness brought us vision and the ability to emulate Hashem in giving unconditionally. We have all truly realized that every child brings the world his or her own blessings.
With love and gratitude for sharing. Reply

Anonymous Leeds, UK December 16, 2010

Thank you Thank you for speaking out. As a disabled person from birth it is difficult when you realise that the world is passing you by and you won't tick the boxes that others expect to Reply

Anonymous December 16, 2010

Holy souls Thank you, Nathan from Brooklyn. That is exactly what needed to be said. Reply

Juanna Moses Mumbai, India December 16, 2010

I had tears in my eyes by the time I finished reading. Its beautiful and touching and so true. Most of us consider ourselves as 'normal', but very few of us really do realise in this lifetime that our idea of 'normal' is so unhealthy. Only the lucky ones do. Reply

hope bristol December 15, 2010

Beautiful Souls You are a beautiful soul and your brother is lucky to have you as well! Reply