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Josh: Imperfectly Perfect    

Josh: Imperfectly Perfect

Busy protesting wars, mom and dad were in for a big surprise - their newborn son was diagnosed with blindness and mental retardation...


At first I thought my older brother Josh was normal. I was young and didn’t know better. I didn’t compare him to anybody else so I accepted him as is, without question. But as I got older and became more cognizant of his differences, I realized that he was actually defective; a substandard creation, a fortuitous being that somehow snuck under Mother Nature’s radar and miraculously managed to survive.


Josh was born second to my young, hippy parents. Protesting wars in their denim bell bottoms and tie dye tops, mom and dad were in for quite the surprise when their newborn son was diagnosed with blindness and mental retardation. There was a gene in my mom’s family, that unbeknownst to her, she carried. So right when my mom thought she was done with those Lamaze breaths at the hospital, she took one look at what was screaming in her arms and realized it was time for a whole new round of deep breathing.  Josh’s existence would catapult my parents onto a completely different life path. And three years into that path, I was born.


I didn’t really know what to make of him. He was wild and eccentric and made a lot of loud noises. I didn’t exactly like him, but I didn’t blame him for the way he was either. I felt bad that he was the one who inherited the mutated genes. I was also embarrassed of him. Ashamed, even. I knew it wasn’t his fault that he couldn’t see, speak or communicate, but he and his frustrated existence bothered me. We couldn’t play together or speak to each other. We couldn’t do any “normal” sibling stuff together. I felt invisible around him.  Talking to him seemed useless since he couldn’t understand me or respond in words. It seemed like all my big brother could do was scream, break things, pinch, bite, and pull my hair. And in addition to making a lot of chaos, he took all the time and attention from my parents and caused the entire family to orbit around him.  I tried to be ok with it, but even at best, when my love for him was strong, in the back of my mind I always sort of believed that he was a living, breathing, genetic accident. I needed to point the finger of the blame somewhere, so I pointed it at G-d, the big old rabbi in the sky, who, they told me, created everything. After all, if He was the one in charge, then this wreck of a brother He gave me had to be his fault too.


While I was busy trying to make sense out of G-d’s seemingly unjust justice system, my parents were busy getting to know G-d’s goodness. Josh’s condition led them on a search for answers to questions they didn’t even know they had. They were searching for comfort, meaning and purpose and the first step of their journey was to the home of a Christian faith healer, a miracle worker who was known to have healed numerous “incurables”. He didn’t restore Josh’s vision or mental faculties but he did manage to guide my parents back to their spiritual roots. With a mezuzah around his neck and a cross on his wall, he nearly feinted when he found out that my parents were Jews.  “You’re Jewish and you’re coming to me?” he gasped. “Why?! Your religion is so rich. You have the Torah! You have the Kabbala! Go,” he said pointing toward the menorah next to the New Testament on his shelf, “Find a holy rabbi and learn about your religion. And I pray that our Father, the Lord of Moses will heal your son.” And so they went…


Their journey took them to a Reconstructionist Temple, then a Conservative Synagogue and finally to an Modern Orthodox Shul. During those years of spiritual growth the size of our family kept growing as well. Before I knew it there were 6 of us; three boys and three girls, with Josh and myself sandwiched in between. Our house was busy and bustling and as Josh approached his teenage years he had become too difficult to manage. My parents decided to move him into a group home for boys with severe developmental delays. They said he required constant care and supervision in an environment that would better meet his needs. Even though I knew this was true, it still sort of felt like we were kicking him just for being the way he was. When he left home, I was simultaneously relieved and devastated. The whole thing just didn’t seem fair.


His new home was located in a suburb of Chicago and every Sunday we would drive out to visit him. Seeing him in this environment was extremely painful for me. I pitied his quality of life and hated that he and the other disabled boys existed in what appeared to be such a tortured state of being. Visiting him always set my imagination on a rollercoaster of how horrible it would feel to be in their shoes. I cried every time I stepped inside. I just couldn’t find a point to their lives and worse, they seemed so trapped--both inside of themselves and in the group home. It seemed like a pointless prison, a torture chamber for the innocent, ran by the infamous warden--god.


It wasn’t until many years later when I came across the book The Garden of Emuna that everything changed. I read the book a few times over and soaked up every word like a dehydrated sponge. By reading, re-reading, internalizing the lessons, and talking to Hashem every day, I came to know that indeed, G-d is kind. He is purposeful. He makes no mistakes. And everything He does is for the best. At last I came to accept Josh, his lot in life, and its impact on me and my family, with a true sense of peace.


Now, many years later, and with 5 children of my own, I look forward to Sunday’s so I can take my husband and kids to visit Josh. He still lives in a group home out in the suburbs. Not much has changed in his life. Even though he is now in his 40’s, he’s got no degree, no wife, no kids, no money, no property, no possessions, no job and no major accomplishments.  His condition is the same as it always was, but mine isn’t: with trust in Hashem, I can now walk into his group home, see him and his sedated housemates roaming the halls with their tongues hanging out, some bound in wheel chairs with helmets strapped to their heads, some swaying back and forth in front of the wall drooling, and I can smile at all of the men and say hello. I can calmly help Josh put on his shoes and socks and walk him outside. It doesn’t break me like it used to. I feel a stronger appreciate for Josh than ever before. And now that my negativity is out of the way, I am open to receiving G-d’s gifts which come through spending time with Josh. His blindness encourages me to look inward and his silence challenges me to listen to the things that make no sound. I cherish our time together and I am sincerely thankful to be his little sister.


Recently, on one of our Sunday visits, I took him out for a walk in a big green field.  Arm in arm, I led the way for Josh like his Seeing Eye dog. As always, there was no conventional exchange of words between us. I would speak a little to him and he would swing his head side to side, maybe let out a grunt or a shriek from time to time, but otherwise remain silent. His silence was special though, it said so much-it rang with simple truth and wisdom. It said all the things we aren’t able to say to each other and avoided saying all the shallow things we didn’t need to say. It forced me to slow down, to stop talking, and to quiet my mind. His influence helped me open my inner eye to things that are invisible to the eye but apparent to the soul.


As we walked along I noticed how the field before us appeared so vast and green. But upon a closer more detailed look I spotted a few yellow weeds. At first I thought the weeds didn’t fit in, like, wait a minute, how did they get here? This is supposed to be a totally green field. These yellow weeds are ruining the pure greenness. How rude! But then I realized how ridiculous that thought was and I began to accept them. These weeds exist, I said to myself. And you know what? They are beautiful! They provide a bit of color and change to the otherwise monotonous green grass. It was as if the yellow weeds were systematically placed among the green majority to provide a colorful harmony and contrast. And that’s when I realized that these weeds didn’t just create themselves. These weeds are purposeful creations just like any flower, tree or plant. They wouldn’t be here if G-d didn’t put them here. Sure, they seem like they haphazardly popped up on their own, but nothing can just sneak past the creator or bypass creation. Not even a measly weed!


The simple profundity of what I was seeing in the field translated into the most epiphanies light: Josh too is a purposeful creation! Yes, of course I knew that already, but this was different. This message really hit home because when I was a kid I thought Josh was an accident, a hideous weed in the garden of our family. But now I was seeing what a tainted mirage that was. G-d is not an artist who accidentally makes a bad piece of pottery and says, “Woops, I messed up with this one but whatever….I’ll put it on the shelf anyway and hope nobody notices.” No way! He hand crafted everyone and everything in a unique and beautiful way. And if that’s true for a weed, how much more so for humans!   He intentionally created us imperfectly perfect with our shortcomings and strengths, talents and weaknesses, abilities and even dis-abilities. There are no genetic mix ups or chromosomal mismatches. There are no mistaken creations.


As we say every day in our morning prayers, Blessed are You, Hashem, our G-d, King of the Universe who opens the eyes of the blind. And oh brother, am I ever grateful that He opened mine!

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  3 Talkbacks for this article    See all talkbacks  
  Beautiful message that's beautifully written
Dassie4/8/2018 4:52:15 PM
  Beautifully written!
Natalie11/3/2016 1:20:35 AM
  How amazing ones insights and experience are as we mature to relate to Gd and with humility & passio
Roberta11/2/2016 6:43:12 AM

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