I’ll be honest, I have mixed feelings about the phenomena of awareness months. There is an absolute need for others to genuinely learn about something or someone that they would not necessarily encounter, confront, or even think about. Learning and talking about difference is invaluable. It fosters better understanding, compassion, sensitivity, and respect for those that are different from you. These months can serve as opportunities to bridge the gaps that divide. I imagine that these are the good intentions that lie behind the creation of such awareness months. On the other hand, there is a superficiality that comes with these initiatives. Its like checking a box – ok we acknowledged this group. It allows us to feel good about making some sort of effort. We develop special programming, invite speakers, write articles, and create the obligatory hashtag. Jewish Disability Awareness and Inclusion month is no different. Communities organize expert panels for discussion, websites create content for further learning, and at the risk of sounding less than PC – members of the community with disability are paraded around in a well-intentioned effort to help others learn and create face to face interaction. But more than likely it’s just a feel-good moment that fades without much impact. After that, the issue is just tucked away until next year. I think we can do better. I think we can scratch beyond the surface and start to create real change with a paradigm shift of perspective.

A foundational pillar of any Jewish community, if not the foundational pillar – is chesed – a display of love and kindness towards others, a giving of oneself to help another. Chesed is the fabric that creates a sense of shared responsibility in a community. That we are not mere individuals living in the same vicinity, but we are bound together through a commandment to simply care. There is an overwhelming source of chesed that springs forth in all Jewish communities when it comes to helping, supporting, providing, and ultimately showing kindness toward those with disability. There are organizations that do amazing and wonderful work, built by people who embody kindness and compassion. They give freely and willingly of their time to ensure that necessary services are provided. I know this personally and I am appreciative for every person who has invested in Amichai.

But there is a misconception that helping people with disability is a one-way street of service. That they need our help, our assistance, our care – but not the other way around. This is where we need to make the change, to shift our perspective. Disability does not define ability. All too often we narrow our focus on the limitation, and in doing so we are selling ourselves and our communities incredibly short. We need to zoom out and see the whole picture. There is a person in front of us who can give. This person has strengths and talents and capabilities, who not only benefits from the community but can provide benefit to the community. When we understand this, when we internalize it and believe it – than we can create a deeper sense of awareness. An awareness founded on the abilities of all individuals. An awareness that empowers all to extend a hand. An awareness that creates a place of true inclusion where everyone has a responsibility to use their gifts to improve. An awareness that runs deeper than a month…spilling over into the next month, and the month after that, and the month after until we weave together a more complete community.

A few months ago, I watched Amichai walk into first grade. I did not hesitate to place Amichai in a regular school. The school I choose specifically works to integrate special needs children and I felt this was a place he would have support – support to assist him but also support in him, appreciating who he is and what talents he brings to the table. I believe in those talents. And so, I did not hesitate. Still, I anticipated there would be a period of adjustment. Going to a new school, unfamiliar faces, bigger classes…he would adjust and ultimately succeed, but he would need time. And I anticipated that that first day of school might not go so smoothly. Amichai is velcro in new settings. That boy knows how to wrap himself around my leg and not let go. I was hoping for the best, but most definitely prepared for the worst. Soon enough, we found ourselves on the first day. He went for a red t-shirt instead of a sweater vest – already better choices. He held my hand – or maybe it was me holding his– as we walked up to the gate. There was music playing, balloons flying, kids shouting and jumping around – some crying. I took a deep breath in, I looked at Amichai and was waiting for the tears. That would have been ok – it was a tremendously overwhelming scene. I even wanted to hide for second. But the kid…ice. He glanced at me. I recognized that look – all business. He was ready. Backpack on, eyes straight ahead -Amichai confidently walked into school like a boss and didn’t look back. Game on.

That day and every day since – well at least every day that he has had school with the constant start and stop due to corona – Amichai walks, in fact runs, into school with that same confidence. Still doesn’t look back – I mean would it really put him out to just turn around and give a little wave? As I write this, I can hear my mother saying smugly – what goes around comes around.  Yeah, yeah. The thing is, I watch him happily run into school and then when I pick him up, I watch him happily run out of school. But what happens in between? From run to run, what’s he up to? How is he really adjusting? Is he engaging with other kids? Does he participate in class? On one hand, I assume he’s doing just fine because I haven’t received any phone calls…on the other hand, what’s he up to?

All my questions were answered last week when I had my first parent teacher meeting. By all accounts, it really was – thank Gd – a glowing report. The teacher described Amichai as attentive and diligent in class. He listens and shows understanding. He engages with his classmates, more and more of his personality comes out every day. He is quiet, but his voice is heard. He is confident. And then his teacher leaned in and said – I know there was some thought of having Amichai continue in special education, to have him placed in a resource room… but why? I don’t see it. I leaned back in my chair and smirked.

 A year ago, when I was meeting with the staff at Amichai’s kindergarten, they were hesitant to recommend sending him to a regular school. They were worried he would get swallowed in a bigger class. They were nervous that his pace was too slow – what if he could not keep up? They were fearful he would not find his voice. They were afraid his confidence would be shaken. I heard what they were saying, I even shared some of their anxieties, and I very much appreciated their deep concern. But there was also something unsettling about this concern – like an unwillingness to change, to progress, to take a calculated risk because they were too scared of what might happen. The professionals who work in special education – in my experience – are extraordinary individuals. They infuse care and love into everything they do. They are deeply dedicated to these children. I am forever indebted. But sometimes, I think they focus so much on disability that they miss seeing capability. That their belief in the child lies within the context of their diagnosis and does not extend beyond, so that when it comes time to make bigger decisions – they hesitate, paralyzed with fear – because what if they can’t?

But what if they can?

When Amichai’s teacher said – I don’t see it – its not because she isn’t looking. The detail in which she described him – she’s looking. She was also quick to ask me if there are other issues to be mindful of, things to pick up on so she can further foster Amichai’s progress. I think one of the advantages of having a child with special needs is that in ANY situation, people are always paying attention. And so far, this teacher has her eyes open. But her eyes are also opened to seeing his capabilities. She sees that he can. She sees that he will. Her question is not what if – she quickly saw that was not the concern. Instead, her question is simply how. How can I help him further succeed? How can I help nurture his talents? I don’t know if every report will be as flattering and positive as this one. Amichai is not perfect. I don’t know if every teacher will be as attentive or insightful. There are bound to be challenges ahead. Still, it’s a good start and I’ll take it. My greatest hope, my sincerest desire – is that his capabilities are seen. That they are valued, developed, and cultivated…and fine, maybe just once, he turns around to wave goodbye. I won’t hold my breath though…I once knew a kid like that.

The struggles of divorce. Long after the papers are signed, it continues. It’s not a topic I write freely about. I talk freely to family and friends. Ask them. They have gotten earfuls. They sit with patience as I express my fears and concerns. They sit with understanding as I convey my frustrations and disappointments. They sit with tolerance as I release a string of bullsh*ts and motherf***kers. I mean, even my parents have managed to overlook the swearing in these moments…these are the same people who would give me discerning looks from the stands if they heard me say anything remotely colorful on the court. Lately though, I find myself wanting to write instead of talk. The stresses and challenges come in waves and right now, it’s a title wave. I would like to write…but I am caught. When I decided to start writing, I wanted to be honest. I wanted to reveal an authentic self, accurately capture the ups and downs of experiences good and bad. Writing provides an opportunity to organize my thoughts. It helps put things in perspective, make sense out of the absolute chaos that sometimes surrounds me. Writing also helps me help others. Because I am not the only one going through this.  If my words can provide support and care for someone going through the similar experiences – I want that too.

But I am caught. The words that I write…they are here to stay.  I can talk all I want. A sometimes-spirited conversation between me and someone else. Behind closed doors. In the privacy of my own space. Never in front of spectators. Never in front of Amichai. But writing…one day he will read my words.

I want Amichai to know me. There are many disturbing truths you must face when deciding it is time to leave a marriage. It is scary and unsettling to face the realities you just want someone – anyone – to take away. But the most frightening truth I had to face of all – a truth that I so desperately did not want to accept as real – was that Amichai did not know me. He did not know the me that was completely content and happy. He only knew someone who could not smile fully and freely. He did not know the me who was quiet but confident. He only knew someone whose voice was quickly diminishing. He did not know the me who was bitingly sarcastic. He only knew someone who found it hard to laugh with any conviction. He did not know the me that was secure and settled. He only knew someone who was just barely hanging on. He only knew a shadow; at best he would catch glimpses of the girl I used to be. I was sad and angry and nauseated by this truth. I was sad and angry and nauseated at myself. Where did I go? How could I let this happen? How could Amichai go through his life without knowing me? And even more – what if I went through my life without knowing Amichai?  I have a habit of beating myself up in my darkest moments. I know. But out of these moments usually comes resolve: He deserves better. He deserves the best. He deserves all of me. It was time to leave.

So we did.

More than anything, I was relieved. Relieved that I could start living again. Relieved that that there would be peace in our lives. Relieved that I could be me and he could be he. Amichai and I were now free to experience the best versions of ourselves. And we have. We know each other. Amichai knows what face I will make when he asks if he has to brush his teeth… how I glance over at him, eyebrows furrowed, a small amused but not that amused smirk – Are you serious? He thinks this is terribly funny and in return, I know what he will say next – make the face again Mommy. I’ll do it again and he will laugh. I know his laugh…head thrown back, an uncontrollable giggle that turns into a high-pitched shriek, ending with a satisfied sigh. There are thousands of moments we share – and every moment is an opportunity to learn more about who we are. My greatest hope is that Amichai and I will always strive towards understanding each other, toward knowing each other.

Still…I am caught. I hesitate to write. I want to write authentically. I want to be a genuine voice that shares, empathizes, and identifies and I want Amichai to know that voice. But I also want to be a shield. I want to protect Amichai. Not from the truth. He knows the truth – he’s known since he’s two. It was a truth I repeated to him over and over after we left so he would have a narrative to rely on, one that made sense: Some Mommies and Daddies live together, and some Mommies and Daddies decide its best to live a part. We decided it was best to live a part. This is ok. This is the best decision for us. You have two parents that care for you and love you very much. He’s lived this truth now for five years now. And as he gets older, more of that truth is revealed – not because I tell him (I always leave the door open to questions), but because his is simply growing up and aware. He sees, he feels, he internalizes. He understands more about me, more about his father, more about the structure of his family life. He understands and can recognize diverging approaches and perspectives, formulating his own thoughts that are appropriate for him. It is this process that I must protect.

A child of divorce faces a tall order– even in the best of situations. To feel a constant push and pull. To feel a split sense of loyalty and love. To feel a division in almost every aspect of your life. To feel a routine shift and shuffle between houses. Not easy. I can say with confidence that the alternative of staying would have yielded far worse consequences – that I do not hesitate to write. But still not easy. Amichai needs to go through his own processes and draw his own conclusions, something he has already started. At seven years old, I stand in awe of his perception and understanding. I will not interfere with that.  And when I think about it in this light, this is actually my authentic self  – assessing a hard situation, understanding the sensitivities involved, the risks at stake and taking what ever action I need to protect, help, and support the boy I love more than words.

This is what I want him to know.

It turned out though that the challenge wasn’t in the actual homework but rather in finding a balance. And that is an ongoing project that improves as time grants me perspective.

That first year – I was relentless. Diligence, persistence, consistency…its like money time for me. All day every day. I remember Amichai’s OT put him through a month of intensive constraint induced therapy. In addition to our regular routine, she asked me to spend another twenty minutes each day working on specific exercises. He had this little glove to put over his left hand so he could only use the right hand. There were toy cars and beads and other small objects that Amichai had to try and pick up. She asked that I fill out a chart each day detailing how long we worked and what Amichai accomplished. When we met after the month and she went over the chart – there was a look of shock on her face. Wow – you really did it every day. I returned the look of shock. You told me to. Was there an alternative?

I promise you I am not a nut ball. I promise you I am not one of those crazed parents with a stopwatch and whistle.  I promise you that Amichai has never ever been overworked and he certainly was not overworked in his first year of life. But in that first year – I was overworked. Overworked in establishing a regular routine and tedious habits because no – there really isn’t an alternative. His well-being depended on it. But my approach needed balance – our well-being depended on that. I felt guilty if we didn’t complete the entire regiment. I felt I failed if we skipped a day. I wouldn’t say I was missing moments as a mom, I just couldn’t fully enjoy the moment if I hadn’t yet checked that box.  The regiment loomed over me…There is price to pay for diligence, relentlessness – you can never relax. Because in the biggest homework assignment of my life – how could I not get it right?

Getting it right. A more experienced parent will tell me that is wildly naïve. I wouldn’t disagree, but at its core – for me – getting it right is simply an unwavering commitment to the kid. But what I needed to understand was that that commitment is composed of so many different features. I am not his PT, his trainer or his coach. I’ll wear the hat sometimes but that’s not my title. I’m his mom. Our relationship, our life together – it could not be one-dimensional.  It wasn’t just about CP. It wasn’t just about a regiment. How could it be? My commitment to him, to us – it had to include a space where we could relax, where we could simply be Mommy and Amichai. For him to know me and me to know him – because the last thing I wanted was for CP to define us. We are so much more. So, I tried – relentlessly – to strike this balance. If we didn’t manage to get in all our work that day or even at all – I tried letting myself off the hook. I allowed myself to just enjoy our time together. And slowly, I began to relax.

The balance I was trying to strike got a major boost when Amichai turned one and he started his preschool program. He received all his therapies there and the pressure to do everything was lifted from my shoulders. Besides for a series of daily stretching, I was relieved of my duties. And I was relieved. But a month ago, all my anxieties started coming back when school was shut down due to corona. He needs his therapies. I needed to get in gear. My first call was to his PT. What should we do? She sent me a program, she said we can do it every day – it shouldn’t take more than 15 minutes – and then added a caveat: If you don’t do it every day, that’s ok too.

Still the familiar pangs of pressure come back. I’ve built Amichai’s schedule around his exercises. Fifteen minutes each day for his upper body, break do some other activities and then fifteen minutes for his lower body. And every time we finish the exercises for the day, the recognizable sense of relief washes over me because we completed our assignment. But I hope I’ve also managed to put a premium on other things that are just as important, more important. We paint. We build. We blow bubbles – Gabe even made bubbles. We pitched a tent on the porch. We go outside and ride bikes. We even collected two snails and made a little home for them. He wanted to play baseball. I taught him how to stand, keep his elbow up, eye on the ball. I jumped up and down when he hit the ball, major fist pumps. He grinned, proud of himself, but also a look in his eyes that said – who said I can’t.

That is the moment I will remember from this corona insanity. That moment and every time he brushes his teeth and makes funny faces in the mirror then challenges me to make the same face – like that Mommy, every time he reaches for my hand to hold just because, every time we play catch with the football, every time we have a race, every time he wants to join me for my own workout, every time he shows me the lego rocket ship he built, every time he wants to tell me something funny, every time we play hide and seek and he establishes himself as the worst hider in history because he can’t contain his laughter…

The regiment of routine stretching, and exercises is just a fact of his life, of our lives. It will never change. And I won’t ever be able to fully let myself off the hook. I will remain diligent and relentless because, well I just can’t shake who I am. But that’s not all of me. All of me is wrapped up in that little kid with the wide eyes and skinny legs – and together we try to strike that balance. Because really, what is the alternative?

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.

At a client’s suggestion, I listened to The Longest Shortest Time’s recent episode – Ina May’s Guide, Completely Revisited. In this episode, Hillary Frank dives back into an episode she did five years ago with Ina May Gaskin. Hillary talks openly and honestly with Gaskin about her own struggles with the natural birth movement, how she so very much wanted to have a natural birth, how that did not work out the way she planned, how she felt she failed at childbirth, and how Ina May’s books contributed to that feeling of failure. As I listened, I found myself nodding my head in agreement.

My older sister is a childbirth educator and doula. She is very – and I mean VERY – good at what she does. Her expertise is vast, thorough, and on point. If you live in the New York/New Jersey area, and you are pregnant – you are going to want to talk to her. When I was pregnant, we spoke often. My plan was to have a natural birth. I was quite confident in my body’s ability to handle birth. I was strong, in shape, and feeling good. As an athlete, I knew what it meant to push through even when you are tired, hurting, and want to stop. I knew how to handle feeling uncomfortable. In fact, if there was one thing I feared – it was the epidural.  Getting a needle in my back, not being able to feel the lower half of my body – that scared me more than labor pains. So, knowing this was the plan, my sister recommended I read Gaskin’s perennial work Ina May’s Guide to Childbirth. I did and I was hooked. Like Hillary and countless other women – I was empowered, inspired, and ready to go.

I am hesitant to disclose the details of Amichai’s birth. When I was pregnant, there were so many well-intentioned women that went over every harrowing moment of their child’s birth. And while I appreciated their openness and willingness to share, these were stories I didn’t need to hear. Tips and advice – I was happy to take, but these war stories…just not helpful. I wasn’t willing to be frightened or worried about my own labor based on someone else’s tale. One experience in birth certainly does not dictate another. So now, I hesitate because I don’t want to scare or worry a first-time mom or any mom really. You do not need to know the excruciating details of a very long birth. But what you do need to know is that nothing went according to my plan.

The plan for a natural birth with no medical intervention went out the window when my labor stopped progressing at a certain point. I was given Pitocin. That worked but the labor still wore on. My energy was completely depleted. I was exhausted and frustrated. My doula – a woman who very much believes in natural birth and very much knew that I did not want an epidural -turned to me at one point and said – you need to take the epidural if you want to make it through the labor. I begrudgingly took it and for the first time in my life, I felt disappointed and embarrassed that I couldn’t reach the finish line on my own.

In the midst of my labor and in the months afterward that I spent in reflection or really beating myself up- it was all just failure. The body I believed to be strong and resilient, the body I had depended on so many times to support me in any athletic endeavor, the body I had coaxed and begged at times to just play on despite the pain or exhaustion – it failed me. And I failed it. Where was my mental fortitude to rise above and just keep going? Where was my focus? Where was my will? These feelings were intensified the more I thought about what followed in the days after Amichai’s birth. It was bad enough that in my first act of motherhood – labor – I had failed miserably. But now I had failed in my second act as well. Amichai had a stroke and I wasn’t there for him. A tremendous sense of guilt washed over me. I thought of him in that moment more than once – thinking about how scared he must have been, how alone he must have felt. And all that would go through my head was the punishing thought that the very first time he needed me most – I was not there. I failed again. Where did I go wrong?

Eventually, with enough time and thought and acknowledgement of reality, the obvious answer came to me: I didn’t go wrong. At all. Labor and birth are hard and complex. My body didn’t fail me, there were simply factors beyond my control. And in fact, in the face of these factors I realized I might have been strong and resilient after all. I took the medicine – I wasn’t stubborn or reckless. I did what I had to do. It’s not what I wanted, it’s not what I planned, but I pivoted and moved on in order to help myself and help Amichai. When I thought about my labor in this light, I didn’t see failure anymore. I saw a successful first step as a parent. As far as the guilt, that took more time as irrational as it was. I think today – and maybe forever – the guilt will linger ever so slightly. My eyes still fill up with tears when I think of him in that moment…I should have been there. I probably – ok most definitely, overcompensate for it in some way. That could explain my helicopter parenting tendencies, to try my best to protect him even when I can’t…but I also know that my actions and behavior toward Amichai are always motivated by love and never guilt. It’s a work in progress…

I share these thoughts specifically because my story isn’t unique. That’s why I appreciated Hillary Frank’s podcast. She echoed the sentiments of hundreds and thousands of women, underscoring the need to adjust our individual outlook and perspective – to be kinder to ourselves – but also underscoring the need for the natural birthing community to adjust their rhetoric. Ina May listened. Based off her interview with Frank, she was motivated to revise her work and modify her message so that its more inclusive of all birthing experiences. Her goal now is to empower women no matter what the plan. Sometimes it happens the way you want and sometimes it doesn’t – but there is no failure in birth because really the plan is always the same – to have the baby. Take the gift.

Perfect is how perfect comes.

There were two recommendations of framework made by his kindergarten staff. The first recommendation – Amichai can go into a mainstream classroom given the right parameters – a smaller class, an inclusive atmosphere, a shadow/wrap-around/assistant – whatever terminology you choose – to help when he needs. This made sense to me. The second recommendation – a resource room track. This would be a separate, smaller class with kids that have a variety of cognitive or behavioral challenges. While the class would physically be in a mainstream school, there is limited to no interaction with the rest of the kids. Within the class, each child receives their own individual educational program. Hmmm. I asked why they thought this was an option – Amichai is sometimes in his own world and works at his own pace. Hmmm…Is there any cognitive delay or issue? Not that we can see. (An official evaluation will be conducted but they don’t anticipate it revealing any diagnosis.)

I pondered this recommendation. I have zero issue with special education. See above paragraph and this article. I am grateful for it. Amichai needed to be in this framework to ensure proper development, but now…does he need it? To say that Amichai is in his own world sometimes and works at his own pace…well, I spoke to several educators and parents and their reaction was the same – show me a first grader who doesn’t fit this description. Even more so, this very issue is being addressed. The overwhelming feeling is that Amichai is not your average run of the mill six-year-old space cadet. He is kid with a lot on his mind. Can’t blame him. But this not being ignored. See this article. These emotional challenges are being attended to through his work with the psychologist, and certainly next year we will continue working with her to ensure a smooth(er) transition. While I respect the staff fully, I kind of wanted to say – ya, tell me something new. Seriously. Tell me something new that would help me understand why there is a need to keep him within the special education system. I’m open to it, I’m not scared of it, and if its what he needs – I’m all for it. But if there is no specific cognitive or behavioral issue – what really lies at the heart of this? Why are they hesitant?

I imagine their hesitancy lies in fear. What if it’s too much for Amichai to handle? Amichai is an introvert. There are times when he doesn’t always want to participate or share. New environments can overwhelm him. He doesn’t always like to be in a crowd. He takes him time, a lot of time – to warm up and feel comfortable. They are scared he might get swallowed up in a bigger classroom of kids. That he will retreat into his shell. That his self-confidence could break. These aren’t thoughts that have not crossed my mind, but two things give me assurance: 1. I am introvert too – we do just fine with the right support. 2. Amichai has that support and has made a tremendous amount of progress…keep reading; still – I have other fears. I am scared of how he will be accepted. How will the kids react to Amichai? How will he react to them? What efforts will the teacher make to create a positive environment of inclusivity?

But I also have fears – even greater fears – in the other direction. If Amichai is placed in a resource room – in a class with other children who have cognitive challenges or behavioral issues that Amichai does not have – won’t that hold him back? What if he isn’t challenged? What if his potential is not met, worse what if its not even seen? This is incredibly scary to me. I shared these thoughts with the staff. They didn’t disagree, they fully understood this side of it too. I know they care deeply for Amichai – but the fact is they happily sit on the sidelines. They kept repeating – at the end of the day its your decision. They aren’t passing the buck – its just not their responsibility. Its mine.

Determining what Amichai can handle, where he can be pushed and where he needs a little more support comes from knowing this child to his core. And I know him. Amichai has gone through many stages. He has grown, matured, and changed – sometimes with tiny little steps forward and at other times with giant leaps. At each stage, I listened carefully to what the professionals were saying – how he was progressing, what they were concerned about – both physically and more importantly emotionally. I addressed these concerns and we continue to put in the work. Yet all along, I just kept saying – be patient, give him chance, he will get there I know he will. And so, I was overjoyed but not surprised when his kindergarten teacher told me in the beginning of the year that Amichai is different. That all the sudden he’s participating, he’s sharing, he’s engaged, he’s answering and asking questions…he’s breaking out of his shell. She said it’s a giant leap forward. I told you so.

It’s not just with my gut, but it is with my full understanding and belief in him – that Amichai can go into first grade like any other child. I say this knowing it will be challenging. It will be a transition for him, there will be days that might be harder than what we bargained for. I have spoken to parents who have children with CP. Their children are much older than Amichai and have gone through the process. They relayed to me that there are trials and tribulations, that you must advocate for your child, that the school must know who you are. I get it, I’m preparing for it. They will know who I am. But the truth is there are some very good options out there for Amichai – schools with smaller classes, schools that have an eye toward inclusivity, schools that are progressive in their educational approach, schools that encourage different types and paces of learning. This path is not easy but its encouraging and I’ll take it – I’ll take all of it because I know he can do it. Just give him a chance. He will get there…he’s already on his way.

I heard a new parenting term the other day – snowplowing… you know, like clearing the way. Any obstacle that comes into your kid’s path – bust out the snowplow and smooth the way, ensuring an easy open path to success. I got a good laugh from that. My general approach to life is the opposite. Leave the obstacles – we learn from them, we grow from them, we become better because of them. I’m not saying to add extra, or to ask for more – but whatever is put in front you – ya, lean in. Ditch the snowplow, grab a shovel and start digging. But then when I think about Amichai, I sometimes wonder if this is always the right approach. Should I be clearing the way?

Watching a child with CP grow up is awe-inspiring but it is also relentless and demanding.  Amichai has mastered so many everyday tasks. He walks up and down stairs with ease. He can get dressed by himself – well, most of the way – he still gets a bit stuck when putting on his shirt and socks aren’t always great…but he tries and he will get it. Amichai can brush his teeth, get in and out of the bath himself, eat, go to the bathroom, ride his scooter fast and furious – all on his own. It is awe-inspiring because he does it his own way with his own brand of grace. My husband Gabe recently remarked that Amichai’s physical challenges do not worry him – that he doesn’t even see them as an obstacle. All he sees is kid that is capable. Pretty great statement, right? Good Gabe – this is what my friends call him – because he is. He gets it and its one of the many reasons I married him. But Gabe’s remark is also testament to how hard this kid works.

Amichai makes it look easy. Eazy peezy he says. But the road is not always smooth – it curves every which way, up and down and then up again – with bumps and potholes around each turn. We meet this chaos with order and structure. Repetition after repetition until he understands how his body needs to work. Every day we stretch. Every day we do our exercises. His well-being depends on it. It can be exhausting and there really isn’t a break. For him or for me. And because he works so hard, because he is so motivated to meet the struggle that will never go away – I ask myself, should I clear the way of other obstacles because he already has enough?

This feeling is compounded by the fact that Amichai also faces obstacles in his family life. He is a child of divorced parents, and even if everything went easily – the fact is that Amichai is being raised in two different environments with two different approaches. To comprehend that, to manage that, to thrive in that – that is a hard feat. But Amichai puts in the work here as well. He happily goes to his weekly therapy session. Not many people go happily to therapy. He knows he has a space to express himself – and he is learning how to communicate those feelings outside of the therapist’s office. He has a pretty firm understanding of the roles people play in his life and what those relationships mean to him. Not too shabby for a six-year-old. So …isn’t that enough too? Can’t I just make it a little easier for him by gently – or fine forcibly, with all of my might – kicking something out of his way?

I go around and around in my head, but ultimately my gut tells me no. Don’t do it. Because even if I wanted to ride my snowplow in front of Amichai his whole life, even if I thought that was a legitimate way to help him find success– I can’t get to every single obstacle he will face. The challenges in life come in every direction and they are unavoidable. It just doesn’t help to shelter him from them. I want my child to engage in this world, to participate, to contribute – and that means he needs to face what is in front of him on his own two feet, no matter the difficulty, no matter how much it scares me.

So what does help him? And how can I reconcile my legitimate feelings of wanting to ease the way for my child who already faces enough, but also my deep conviction that the obstacles are there to make us better? I think the answer lies in this – he is not alone. That while he might need to face whatever hurdle is in front of him on his own, there will always be someone close by – offering guidance, support, and encouragement. And knowing this – knowing that you are never alone – this breeds confidence and trust that you can take on anything. I know this to be true in my own life. The times that I have faced struggles, it was the people who I knew stood behind me, who I knew would not leave me – they gave me the ability to stand boldly. Amichai has this same army of people surrounding him. It is a privilege to captain this army, but it gives me great comfort in knowing that the company I lead – they share the same dedication to this child I love profoundly and intensely.

For now, I’ll leave the snowplow behind. I’ll let Amichai run in front of me or walk a few paces behind me as he often does. As he gets older, I’m sure there will be times he won’t want to walk with me at all. Its just not cool Mom. And then when something comes up, when he faces the unavoidable obstacle in his path – with an entire platoon of people cheering him on – he will kick it out of the way himself…eazy peezy.

Explaining to a five-year child that he will undergo a surgery is challenging.  The what, when, why and how are all subjects that must be covered but it is a delicate balance between offering too much detail and not revealing enough. Amichai is a child who likes to be in the know, but he is also a child who can scare easily. There are times when he jumps at the sound of another car pulling into a parking lot…and now I was supposed to explain that a surgeon was going to cut into his hand…But, with the help of the school staff – Amichai was very prepared. His teacher made him a book about what would happen. It was short – prepared in a language he would understand and to the point. I also explained to Amichai to him why he was getting the surgery – to help his right hand get stronger. To be honest, I was expecting an extreme freak out when all of this was laid out – which would have been completely legit. Surprisingly, he took it all in stride. A bit apprehensive, but there was almost a grace to which he was accepting everything…still, I was bracing myself for the eventual melt down.

The day of the surgery came and Amichai was as calm as a cucumber. I was certain that that melt down was just around the corner, but it never came. When I reminded him that he couldn’t eat – he just said he wasn’t hungry anyway. When we were going downstairs to the car – he skipped happily to the elevator. When we arrived at the hospital – he held my hand but walked confidently through the hallways. He actually helped to calm me and quiet the scenes I had played out in my head of dragging him kicking and screaming into surgery. And while there were more than a few tears when the time finally came (unfortunately, he didn’t go in until much later than scheduled), again – I saw that same grace emerge and the boy handled it with a maturity beyond his years.

The surgery was about 45 minutes, but it took him a while to recover from the anesthesia. When he noticed the cast on his arm – I thought, this is it – this is where he loses it. Except that he didn’t. He looked at it with mild interest and then turned his attention to the ice pops the nurse was handing out. And this is how it had been the entire process – each time I anticipated the melt down – Amichai was one step ahead of the game. He was prepared. He was graceful and resilient. A few days ago though – a week and half after the cast had been removed and I thought that we were in the clear, it came…except not in the form I had expected.

Once a week, Amichai goes to the child psychologist – a woman who has been an absolute rock star. There is a real talent in being able to glean spot on insight through play.  When he’s in her office, I hear elaborate schemes of flying into space or superheroes saving the day. I hear how animated Amichai is and I hear his laughter. But this time, after about 40 minutes -he suddenly opened the door and came running out. He wasn’t crying or upset, in fact he was smiling and almost giggling. I looked at my watch knowing it was a little early and asked if he was done. He just looked at me and shrugged his shoulders. I peeked my head into the office and the psychologist motioned for me to come in.

What happened? She explained to me that one of the little figurines they play with is a doctor. They were playing out some scene where another doll had to go to the hospital. She gave Amichai the doctor and told him that this doctor can operate on patients just like his doctor had operated on him. Game over. Amichai got very upset. He threw down the doctor and said something to the effect that he hates doctors and he doesn’t want to see them ever again. After that he picked himself up and walked out.

My first reaction was to apologize for the outburst. Don’t, she said. He’s angry. He’s angry he had to have surgery. He’s angry his body doesn’t always work the way he wants. He’s angry that sometimes he doesn’t feel strong. My heart sank.

I am keenly aware that while the experiences Amichai and I have are intertwined, they are not one of the same. Of all the emotions I experienced when I learned that Amichai had CP – anger was not one of them. There were moments after Amichai’s birth where I would think about him in the womb, just a few days or weeks prior -when he was perfectly ‘normal.’ I couldn’t wrap my head around what had happened. I was confused, unsettled, anxious, scared maybe even sad – but I was never angry. And in fact, anger scares me. I’m human, so I’ve had a bout or two of rage – but angry people are just downright frightening. It consumes them, controls them, and leads them down a path which is very very dark. I didn’t want to go down that path just as my journey into motherhood was beginning, and I certainly did not want to project that onto Amichai. Although I was facing immense stresses, I was certain that the child in front of me represented hope and optimism. Something greater than me. And so, I clung to that instead of the darkness.

But Amichai’s experience is not mine. While he likes to walk around in my Adidas slides, we will never really be in each other shoes. I don’t know what it is like to be him, and I certainly can’t tell him he shouldn’t feel angry. I just don’t want him to be angry. I looked up at the psychologist and she probably read my mind. She said to look outside into the waiting room. There was Amichai, jumping around and practicing his ninja moves. He is not an angry child, but he’s allowed to have moments of anger. She said he was brave. He went along with everything because he knew this was good for him. He understood that he needed to act like he was on board, and he even was on board – but the frustrations remain. Anger is part of his experience.

Her thoughts challenged me to take a closer look at my own approach. My optimism is not fake. It does not cover up anything I wish to push down. I am steeped in the reality of CP, but maybe – I use my optimism to protect Amichai. Because as his parent, I’d give anything for him not to go through the agony and the sadness. I don’t want him to feel as though he lost something. If I just impart to him how strong he is, how great he is – than maybe he can avoid the darker moments of self-doubt. But that’s not reality either. I understand the value in facing the struggle no matter how hard it is. Amichai will have to go through his own process of acceptance, and I will need to accept it will be painful and frustrating. He will get angry. He will get upset. He will want to have a meltdown – I need to let him. Because ultimately, it will make him stronger and bring him peace.

And maybe I need to understand that there can be something cathartic about anger if directed in the right way and used responsibly. Amichai has what to be angry over, but he is not consumed by it. He is simply trying to figure it out on his terms. He expressed his anger in a safe place, he acknowledged that he was hurting and took a moment to put it in its proper place.  When Amichai walked out of the psychologist’s office, he seemed lighter.

And that too is grace.

After being in the NICU for two weeks, the nurse called me early one morning and casually said, He can come home today. I needed her to repeat that. He can come home today. I felt a wave of relief, happiness, excitement… but it was short lived. Soon those feelings were replaced with another wave of emotion – panic. While Amichai was deemed strong enough to come home, how were they so sure I was up to task? If any mother ever tells you that she left the hospital with absolute confidence in her ability to care for another life…well, she’s lying. And yet, the hospital sends hundreds of mothers off each day believing they can handle it. This blind trust always amazed me even under the best circumstances. A life is entrusted to you without any practical knowledge or understanding of what that life needs. I can’t think of any other job in the world where in the prior experience section you check off none and yet for some crazy reason – you’re hired. I was so far out of my league.  Amichai was in the NICU. He had been hooked up to monitors and screens for two weeks straight. He was on two anti-seizure medications – one of which needed to be administered at 4 a.m. Suddenly, they were handing this little life off to me and saying, ok your turn – go handle it. Panic.

The learning curve is steep and quick. There is very little that will prepare you for being a mother. In those first days and weeks, I was swimming underwater – things were always just a little blurry and every time I surfaced, I was gasping for air. But soon, with the help of my own mom – I found my rhythm. I put Amichai on a schedule. I figured out the best way to burp him and bathe him, I learned that he did not care for the pacifier but liked my pinky finger instead, I discovered the best way to avoid getting peed on while changing his diaper, and I became an expert at administering his medication – even at 4 in the morning. Still wasn’t easy, but I was managing. Maybe the nurses knew what they were doing. Maybe I could care for this life.

Five years later, I am certainly convinced that I can care for my kid. I am confident that I know what is best for Amichai; yet, I still experience moments when I think to myself – am I qualified to make that call? Lately, that question has been swirling around in my head as we begin to research surgeries. There is no cure for CP, but there are surgical opportunities that work to reduce spasticity. Once spasticity is reduced, the hope is that function and movement will improve. Tendons and muscles can be lengthened or replaced, joints can be realigned, nerves can be cut…over the past week I have learned thousands of new acronyms and abbreviations for any and all surgical procedures – TIP, SPML, SDR, PERCS…goes on and on. Each surgery has its own set benefits and drawbacks, each surgery has its own set of expert surgeons associated with it, and each surgery has its own set of parents who laud it as life changing.

I want nothing more than to provide a positive life changing surgical experience for Amichai. He deserves it; yet, as I sifted through the material, I felt a familiar sense of panic. Intricate medical details, scientific studies – I understand the words I am reading, but how am I equipped to make this decision? Last time I checked, there is no MD, PT, or OT after my name. Obviously, I have consulted with Amichai’s therapists – they work with him every day and have a clear understanding of his needs. They have made efforts to be at each doctor appointment. They have assured me that they are there to assist and present their informed recommendations. Superstars. I also know that one appointment with one doctor does not seal the deal and there are other discussions to be had. Certainly, it is always worth getting second and third opinions which I have begun to gather. In the end though, its my decision. In the same way that I wanted to ask the nurses if they felt confident I can handle this, I feel a need to check in once again and ask – should this really be up to me?

The responsibilities of being a parent can be daunting, overwhelming and downright scary. I remember looking at Amichai as a baby – staring deep into his wide eyes – and feeling that full mantle of responsibility. He’s so little, so vulnerable – his well-being, his health, his development – it’s all on me. That sense of total dependence is there even today – he’s only five. He’s still growing, still unable to fully care for himself…reminding him to wash his hands after the bathroom is daily occurrence. Oops, I forgot. The day will come when he will take those steps on his own, but right now – his wide eyes stare back at me for guidance. Daunting, overwhelming, downright scary. But at the same time, the responsibility of being a parent is also an empowering privilege. I was taught not to squander privilege. You work to protect it, to cultivate it, to nurture it because you did not earn it, you were gifted it and you must care for your gifts. My parents always busted out the “respect your belongings” line. I find myself saying this to Amichai and see my own eye roll in him. But, I am convinced that if there is anything in this world worth putting my time and energies into protecting, cultivating and nurturing – often to the point of extreme exhaustion – it is him.

And I suppose, when I think about that idea, I recognize that the privilege of responsibility has brought out the best in me. My dad told me long ago that I couldn’t run from it, that the only choice I had was to parent up. Even on days when I can’t catch a break, and I feel I am failing at everything – I find comfort in knowing that there is at least something, someone – I have given my all. I can still feel the victory of accomplishment in the dark moments. So, to answer my own question and quiet the doubt in my mind – yes. Yes, it should be up to me. The professional assistance is there, and my decision will be based upon the information I have gleaned from them. In fact, any decision about Amichai’s well-being has always been made with professional guidance, but no one has put more into this child than me. I must rely on that sentiment to lead me. I would never and can never pass up the opportunity to step forward and say this is what needs to be done. He’s depending on me.

Bring on the abbreviations, the medical jargon and research papers…I’ll figure it out, I’ll find my rhythm.

I can care for this life.