The thing is – I’m pretty calm right now. I was even relatively calm when I came back from the pharmacy the other day and saw that Gabe had rigged up some ropes on the porch. He and Yosef decided it was a good idea to repel down the porch and then climb back up the wall. Right… As more or less experienced climbers, I went with it although I suggested that maybe they should double check the hooks they were using – they looked like they needed some reinforcement. I also did not succumb to any peer pressure and flat out refused to try. I am daring but not stupid. They repelled down safely and climbed back up, although Gabe was just a bit winded when he finally made it back over the porch railing. When I say a bit, I mean a lot.

I think I’m calm because I do not feel alone. Indeed, part of that is because Gabe and Yosef have joined forces with me and Amichai. But I have felt alone before. I felt so very alone for so many years in my first marriage. It is an inexplicable and intensely unfair experience to feel alone when you are living with a person whom you are meant to share a life. I am not a dramatic person. I recognize that there are tragic and incomprehensible sorrows that people encounter in this world. As I write this, I know there are thousands suffering and I hope I am not minimizing their pain – but being stuck in a difficult, volatile marriage is an experience that will rip apart the grounds on which you stand. It will leave you feeling utterly and totally alone.

It wasn’t about physically being isolated from people that made me feel alone. I went on with my life and life went on around me. I went to work, I took care of Amichai, I talked to my family, I talked to my friends. I had contact with people every day. That wasn’t the problem. The problem was that over the course of time, I fell further and further away from me. My home life was cold, unstable, and unforgiving. I knew everything about it was wrong. There were very few moments I ever felt at home in my home. I knew the things that were said to me, the interactions that took place, the behavior displayed – none of it was okay. None of it was acceptable. I knew that I would never allow a family member or friend to stay in such a relationship. I knew I would do everything in my power to physically remove them from that situation. But here I was, staying. Stuck. Tolerating the intolerable. The distance between the person I knew myself to be and the person that was staring me back in the mirror became greater and greater. I was trapped in my mind, an endless stream of distressing thoughts. Should I leave? Leaving is quitting. I can’t quit.  Is staying quitting? Just make a decision. I can’t. The foundations of my own confidence and strength were crumbling beneath me until ultimately – I felt isolated from myself.

I knew who I was, or at least who I had been – I just had no idea how to get back to her.  It was like a wall had been imposed around me. The shadow of myself was stuck on the inside, and me – the person I trusted and believed in, the person I so desperately wanted Amichai to know – she was on the outside. It was too tall to climb over; it was too strong to push down. But here’s the thing – there is a distinction between feeling isolated and being so. Because the truth was, I was never alone. On the other side of that wall where I stood trying to figure out a way to save the shadow trapped on the inside, there stood the people who knew me best, who loved me the most. And they had enough. They began to punch and kick and knock down the wall, bashing it in– creating a path back to me.

I have been stubborn in my life, many times refusing help – I am grateful this was not one those moments. I accepted their help. I accepted their willingness to ease the weight from my shoulders. I accepted their desire to catch a falling friend. The people around me, they cared deeply and profoundly. Our experiences were one and the same – watching your daughter, sister, your ride or die teammate – watching her struggle – it’s the same pain, just a different angle. But they are the people who believed in me. They believed in the power I wielded, and they reminded me of that. They believed that nothing was lost, nothing was destroyed. When I accepted everything that they had to offer and encourage – my confidence returned, my strength returned – I returned. I was never alone

A friend posted on Facebook – Every time you hear the words “unprecedented times,” take a drink. Cheers. These are unprecedented times (cheers again), maybe even dark times. But the optimist in me searches for something beyond the statistics, plummeting market, social distancing and enforced quarantine. We might feel alone, we might feel isolated – but look around. The days we are facing – we are facing them together. We can vent and shout and cry out in one voice because we are experiencing the same thing. We can also encourage and motivate and push each other forward because we understand the shared challenges. It is a rare moment of unity. There people on the other side of that wall. We are not alone. We are not isolated.

Go outside (please not more than 100 meters though). Go to your porch. Go to your back yard or front lawn and see that there are others out there too. Extend a hand…well, don’t do that – but share an understanding grin.

We are all right here.

The first time Amichai had an eye infection it led to a stay in the NICU, so you might think that still today – even the mere sight of puffy and red eyes would send me into a post-traumatic tailspin. But it doesn’t. It doesn’t because I choose to understand Amichai’s first eye infection as a symptom that saved his life and – well because sometimes, most times…its just pink eye. Drops and cream will do the trick and indeed as I write this, Amichai’s big beautiful eyes are clearing up.

But, if you are a parent who witnessed your child go through a traumatic medical event, there can be a logical tendency to overthink and over analyze every illness or ailment that he or she will experience from that point forward. Is this a lingering symptom? Early on, I fell into that trap. My mother told me to rely on my instincts. My instincts? Before I had a child, I was doubtful I had any maternal instincts, and now I was to rely on them to take care of a little baby who had suffered a stroke? Perhaps knowing that I was still on edge, my mother also told me not to hesitate and call the doctor for anything. I put him on speed dial. The first time Amichai got sick with a vrius, I thought he was having a seizure when all he was trying to do was throw up.

Since then, I have relaxed a bit. I’ve learned I actually do have maternal instincts…a virus can just really be a virus and not an epileptic episode. To be clear, I am extremely diligent in giving over Amichai’s medical history to every medical professional we ever meet. The first time I took Amichai to the dentist – where all he did was count his teeth – I busted out his records. And in fact, the dentist was grateful I told him because he took extra care in testing his bite and examining his jaw line – making sure his mouth was equally strong on both sides. All doctors need to know background and history to properly diagnose and it would be irresponsible as a parent not to provide that information.

But it can also be irresponsible to remain fixated in time. Amichai is not defined by his stroke or his CP. It is a part of him, but it is not him. Similarly, any illness or ailment that comes up usually does not need to be looked at through this prism. If – Gd forbid – Amichai had continuing and chronic ailments, if he presented as frail, feeble and frequently unwell, then there would be cause for concern. Perhaps then I would still be trapped in corridors of the NICU, understandably unable to move forward. But he doesn’t. Time and experience have showed me that he is like any other growing child who has a perpetual runny nose, isn’t always honest about washing his hands, and ends up with pink eye.

And these are good things really. If I look past my own annoyance of needing to cancel work and feeling unproductive, I am thankful. There are parents right now sitting in a NICU somewhere, anywhere – wanting nothing more than to deal with a gross crusty eye. Before Amichai was discharged from the hospital, a social worker gave me the single greatest piece of advice that I continue to follow. She told me to treat Amichai like a normal baby. While there is now a lot of trauma and baggage that now surrounds the story of his birth, she pointed out that he doesn’t know that. I might be worried and anxious, but its unfair to put any of those worries on him. She told me to check the baggage at the door and move forward. Move forward so that I can enjoy the exciting times, the ordinary occurrences, and even the frustrating moments that will inevitably come.

She was right.

I treat him like any other child, because that’s what he is. I’ve moved forward. I enjoy the exciting times, I find peace in the ordinary occurrences, and if you give me time to reflect, I can at least try to appreciate the frustrating moments…like when I need to wrestle him down to put drops in his eyes. And that is a good thing.

When Amichai was first diagnosed, and the doctors explained that he would potentially have difficulty using his right side – I couldn’t necessarily process what that meant, or how it would look. I mean the doctors couldn’t offer much information beyond that basic statement, so how was I supposed to understand it? How was I supposed to picture it?

I remember being strangely focused on shoes. Over and over again, I thought – how would he tie his shoes? And then I got angry with myself. Shouldn’t I be focused on the big picture stuff? Yet all I could think about were the ordinary activities of a child’s life. Playing with toys. Holding a cup with two hands. Feeding oneself. Getting dressed on your own…Learning how to tie your shoes. But I think my obsessive thoughts about the ordinary were really getting at a larger issue – Would he be able to do all the little things? The routine things, the things we do so effortlessly that we barely take notice we are doing them.

Amichai puts effort into everything he does. To be clear, I don’t think this is a bad thing – he’s learning early on that effort always pays off. And because of his tremendous efforts, nothing goes unnoticed. We will be eating dinner and all the sudden he’s staring at me which a huge smile –  because he’s picked up his fork with his right hand. He will be cleaning up toys in his room and all the sudden he will run out laughing with joy – because he’s holding a toy car in each hand. We will be at the park and he will be shrieking with excitement –  because he’s climbed the ropes by himself. Just the other night as he was getting his pajamas on, he was simply elated – because he grabbed his toes with his right hand. His joy is real and true and simple. He takes notice of those very little details that we all skip over. The don’t even enter our radar, but they are moments of celebration for Amichai. And now they are moments of celebration for me as well.

Someone was once amazed at how easily I can catch a ball. I didn’t get it. Catching to me is like breathing – you just do it, it requires no effort. But it does. In fact, most people aren’t that great at catching. As silly as it sounds, I am more thankful for that skill today than I ever was growing up. But most people are pretty proficient when it comes to the daily activities of life. Every day we do the little things – we don’t think about it, we don’t sweat it. We don’t even notice. But nothing is a given – that’s a lesson that Amichai has hammered home for me. The routine aspects of our life – its not a given that we just do it. The mundane shouldn’t just be brushed off. It is a big deal. We should take time to notice.

I watched my 4 year old son run right his hand over the surface of a wall. And I was so grateful – not only because he was able to stretch his arm out and open up his fist, but also because I noticed.

I cannot wait for him to tie his shoes.