There is another child. His name is Benjamin to some, but Benno to many. 

Everyone knows Benno. He has a magic and a charisma that captures every person in the room. He is eight but acts like an aging 70 year old, complaining about his hips and telling restaurants that its “a little too loud in here.” For his fifth birthday he asked for a massage. Like his dad he treasures the finer things in life.

Everyone always asks me how Benno is. Everyone is obsessed with him. He says pretty ridiculous things like “I thank you kind sir for your thoughts, but I’ll pass and counter with this idea.” These are things he will say to you in a conversation when asking him if he wants a bagel.

Everyone remembers Benno’s name. Often people are fuzzy on Jacob’s.

However, just as Benno can brighten a room, he can also turn it dark, pitch dark.

He is hard. He is VERY hard child.

 I feel qualified to make that statement. I’ve worked with 1,000’s of children, there are harder ones than others, but Benno falls into that top 1% category called impossible.

If you say right, he says left, just to say it. Just to…drive/make us crazy? Hear his own voice? Win an argument? Always an argument.

Technically he suffers from a generalized anxiety disorder (an extreme one). He just came out of the womb like that. Looking back at home videos of his first years I can now see the fear in his eyes looking at the world. Not being able to speak yet, us new parents, inferred what his wide eyes and big reactions meant. They were just plain adorable. How funny he is. He had some good party tricks to show off to friends.

Us: “Look at my child take his legs and bend them up to his face. He is a human pretzel!”

Inner thoughts of Benno: “Why are they placing me above these BLADES of grass?!”

Us: “Look at how my child knows to reach for the edge of the pool. He’s so brilliant.”

Inner thoughts of Benno:  “HOLY FUCK I’M GOING TO DIE.” 

But, luckily, or not luckily (depending on how you see it) he spoke EARLY. VERY EARLY. So early that I lied about his age in mommy and me class registration. I put him with older kids, so I wouldn’t get a zillion questions from other moms of his peers. While they were always kind and fascinated by him, in mom talk the question is really, “why is my child not doing what your child is doing?”

You see that’s what he do…we just benchmark. Happiness, sadness, smart, dumb. Please know mom reading, I’m not calling you out. Its just reality. ALL the parents, even the best ones (and I’ve seen every shape and size) just want to know one thing, how is Jimmy doing compared to Sam. They will glaze over as you talk about Jimmy’s growth, pretending to see the child’s work on the table, but all they are doing is looking at the others. We should all work on that, but that’s another conversation.

So he talked and he never shut up.

Never.

I recall when he was just over a year locking myself in my bathroom. For over an hour as he called for the same thing over and over. The same exact word. Over an hour! People assume because I’m in education and a teacher that means I must be an incredible mother. Let me be clear, they are NOT the same thing. Teaching came so easily to me that it was like breathing air, but mothering sometimes suffocates me, I struggle for breath.

Now leaving a very young child unattended as you bang your head against a wall is not good parenting by any means. In my former position, if someone told me this story, I would by law need to report to you to child services. But I did it. I left my 1 year old alone for over an hour and I was not worried. Not for one second.

If Benno was left in a room of knives, he would chisel a spoon. Safety is his middle name. He sees the world not through wonder, but danger. He didn’t try to crawl near the stairs, we never HAD to put covers over outlets (although Steve of course did). He would only venture into an activity after witnessing others do it 100’s of time and coming back in one piece.

This takes intelligence. You need to know to be scared. He is crazy intelligent. He has been tested many times and I’ve read 100’s of neuropsy test results in my career, everyone thinks they have a genius. I actually have one. And I’m not bragging. NO ONE wants a genius. This an educator speaking. You just want balance. Success is in the balance in life. The edges are where you spend life trying not to fall.

Benno has it harder in life because of his awareness. Some things even after multiple exposures are still an issue. 

Loud noises (or actually any new noice). Danger!

Elevators. Danger! 

Trains. Danger!

Food. DANGER!!

His life is limited, and therefore, our lives are limited too, including Jacob’s.

We can only go to certain restaurants (2). We can’t go to birthday parties and mingle with other parents. Its hard to be part of communities. We can’t go to the Freedom tower, Jacob’s dream, as Benno is afraid of heights, and Jacob doesn’t want to go anywhere without Benno.

Jacob adores Benno. Of course he does, he’s Batman.

Until 2 weeks ago, we all, including Jacob lived in our usual scheduled programming, The Benno Show! Our lives revolved around Benno.

And I’m angry. I said it. I said it. Bad mom. I’m pissed as hell at him. To be fair I’ve always struggled with Benno, but now I’m SO mad at him. Mad at how he has limited things for Jacob. Mad at how hard he is making this when it is already hell.

Jacob spent yesterday morning having his dressing around his tubes changed. He spent his morning wearing a mask. He spent his morning crying in pain and throughout the entire hour of agony my phone didn’t STOP. It’s Benno. He’s screaming about going to camp. “I’m scared.” Benno screams. “I hate you.” “I’ve ruined his life.” My greatest moment of anger was from the line below:

“I can’t go back to school. On the first day they will ask what we did this summer and I’m not going to Nantucket. I have nothing to say”

WHAT?! You can’t go to school because of Nantucket. It took every ounce of me not to kill him. None of us have ever been to Nantucket. EVER. Not me, Steve, Jacob, nor Benno. He isn’t missing some big family tradition. He’s just a dickhead. A spoiled one too. Yes I’m calling my son a dickhead.

And we are trying to make him happy. Trying to remember that he is so anxious in life and changing things on him is scary. Steve has spent the entire week working with the camp to allow his nanny to go with him all day. He has 1:1 support and STILL he won’t go. He went for one hour and left. He’s “scared.”

I MEAN COME ON! Its fucking camp. Don’t participate, I don’t care.

I try not to speak to him. I don’t pick up his calls. I don’t listen to his voice texts. If I do I would be mean and mad. I would tell him to “buck up.” I would say I’m sending him to boarding school, literally Benno’s biggest fear. Benno has never slept out of the house nor does he plan to. He said he’ll “consider it in my 20’s.”

But I also miss him at the same time. We all need Benno. As I said he brightens the room and he can even do this in the hospital. When he is here it all changes.

When Benno is here, Jacob smiles, Jacob eats, Jacob laughs, AND Jacob walks (something he normally refuses to do). He made signs for Jacob’s wagon “VIP COMING THROUGH.” He rides Jacob around for hours. He gives Jacob superpowers. Benno climbs on my lap and snuggles me. He gives me love. And, of course, all of nursing knows Benno’s name now. They ask when he will return. He leaves a lasting impression.

I don’t know much about superheroes. My only knowledge of Batman is from the Lego movie. According to that, Batman can be a bit of an asshole. Maybe that just comes with the territory of being Batman, but God give me strength.

Please give Benno strength. I’m tapped out.