A few days ago, a little girl tapped me on the arm and asked me what Amichai was wearing on his leg. She was referring to his brace. Amichai looked at the brace and then at me. He’s well-aware of what is on his leg, and I have started to tell him the story of what happened to him at birth. Its important to for him to have his own understanding, to have a narrative he can rely on and take ownership of – this is me. But here, I found myself searching for words. Should I bust out my prepared lecture on CP? Is she really interested in the details or more fascinated with the hard-plastic splint covered in Superman stickers. I went for less details, short description. I explained to the girl that everyone has different bodies and different challenges. Amichai has really strong legs, but that his right leg needs a bit more help and support. The brace helps him walk, run, and jump super high. Cool she said.
I loved everything about this interaction. I loved that she was staring at his brace for a while. Staring isn’t always bad – kids should take notice of something out of the ordinary. I’m assuming she had never seen a brace or maybe not close-up like that, and she was just glancing with curiosity. I am not saying to gawk or point, but it is ok to be aware of the people surrounding you…and if something looks different – ask. And she did just that. A genuine inquiry, a request for information. We can sometimes fear what we don’t know, but if we don’t ask, that fear can just fester and grow irrationally. She just wanted to know and understand. I also loved that her Mom gave her the freedom to ask. Parents are often on edge that their children will somehow offend with inappropriate questions or comments. She was not shushed, quieted, or told its none of her business. And lastly, I loved her reaction – cool. She didn’t see disability or difficulty. She just saw the brace for what it is, thought it was pretty rockin and then said goodbye to her new friend Amichai.
It was a scene straight out of a Mr. Rogers episode. Real warm and fuzzy. But is this reality? Can I expect that all interactions will be pleasant teaching moments? And what happens if they’re not – how do I prepare Amichai?
My belief that Amichai is child with immense capabilities is not just hyperbole. I know – I know, he can do anything. He has shown time and time again that a physical limitation will not stop him. I know this, I feel it, I live it with everything I am. But as much as I can instill this belief in Amichai, to continue developing and cultivating it within him – I also know that I cannot control how other people react, what other people will say. I remember sitting in the lounge area outside the NICU after Amichai was diagnosed. It was all very tranquil – the sunlight poured in through the rounded glass windows overlooking the Jerusalem forest. I wanted to scream into the forest. My parents – ever the cheerleaders, were pumping me up. You can do this – you were trained for this moment. He can do this. He will do this. Nothing will stop him – you know this. I did. I didn’t even know Amichai yet, but I knew this. Still, I found myself suddenly blurting out – yes but kids are cruel! I was expressing a dark fear I hadn’t even wanted to say out loud because I didn’t want to give it credence: What if kids make fun of him because he’s different? My parents looked at me with shock. It’s a look I recognized from my teenage years when my sisters and I would purposely say something which would gravely disappoint and set them off…my younger sister seemed to have real knack for this, still does. Oh Gd. I’m in trouble. Where is this coming from?! Who told you that?! Why would you even say something like that? Who taught you to think like that? We didn’t teach you to think like that.
I think my parents’ reaction was based on a few different factors. First, my parents taught us to be understanding and accepting people. Cruel behavior toward others and making disparaging remarks about anyone is simply wrong. Any upstanding parent teaches his child the same. Second, they taught us to know who you are and stand tall. If someone would ever make disparaging remarks toward us – well, that’s their problem. Don’t let the words or behavior of others bring you down. Third, I think my parents were trying to slow me down. Amichai was just a few days old. Let’s not jump to any crazy conclusions or imagine unwritten scenarios. And lastly, I think they were probably activating their own parental instincts to protect their child and tell me bad things won’t happen. If I wanted to protect Amichai from all the evils in the world, they were doing the same.
But they know the reality. My parents raised four children and while they wouldn’t categorically define kids as cruel (I wouldn’t either!), they know sometimes there is at least one kid who says one stupid and thoughtless thing. Even if you have raised the most confidant of children, that can still be scary for a parent because you know it will hurt. Your child will hurt. I’ve been there as a kid. I’ve even been there as an adult, and I don’t think it was easier for my parents to watch regardless of my age. But there can be something elevating in that moment. It’s not that I would ever want Amichai to be in a situation where he is Gd forbid bullied or made to feel less than what he is. That is categorically wrong and intolerable. But an inevitable encounter with some jerk at some point in time? It will happen. Instead of fearing these moments, what if we embraced them? What if we used them to learn about who we really are? Do I really believe in me? Everything that I was taught, everything that my parents tried to instill in me about who I am, my infinite strength, my infinite worth – do I believe it? Am I going to truly stand tall or am I going to let this jerk get to me? You must make a conscious choice to rely on your own truths and filter out the noise. These might be unpleasant situations, and I hope that one does not need to face them again and again, but they are breeding ground for character building.
Protecting your child comes in so many different forms. I will never put Amichai in a situation that is harmful or dangerous – be that physically or emotionally. But protection also comes in the form of giving your children the right tools to face the world. So, in the same way my parents taught me, I will continue to cultivate his confidence and belief in himself. I will continue to instill him with the knowledge that his strength comes from within and that is priceless. I won’t pray for the day Amichai encounters a jerk, but if he ever does – I’ll pray he has the proper perspective and uses it as stepping stool for greatness…and equally important, I’ll also pray that society continues to evolve – that differences are seen, understood, and appreciated. I will pray that more little kids stop, stare, ask, and then see Amichai for what he is – another friend.