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.

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?

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.

Her guest was an athlete whose name was somewhat familiar to me but never actually heard speak: Alana Nichols. Nichols is an insane Paralympic athlete who has earned medals in both wheelchair basketball and alpine skiing. For those of you who didn’t catch that – she played in both the summer and winter Paralympics. Oh ya, she not only competed in both – she also struck gold in both…and silver and bronze. Spain spoke to her about her journey – what it took for her to recover from a devastating spinal cord injury that left her paralyzed from the waist down, how her life has changed for the better, and the ways in which she has become a role model for all athletes. In college, I was a big fan of the highlighter – but often I found myself going overboard. Afraid that every detail I was studying was important, the pages of my books took on a florescent yellow glow. As I was listening to the podcast, I got the same feeling that every sentence, every word needed to be highlighted.

I could write about each idea they covered – it was all gold. I want to, but I won’t because you should listen and experience it yourself. There was one concept discussed though which especially stood out for me – understanding the power of limitations. In the course of their conversation, Spain wonders if limitations can facilitate success. She asks Nichols if she thinks she would have accomplished all these great feats – not just as an athlete but as an advocate – if she was still able-bodied. Nichols answers candidly – It is hard to say. She explains that her will and determination have always been a part of her. Before the accident, she was a highly recruited softball player. Her plan was to play in college and then the Olympics. The drive had been there forever. The difference after the injury was that her limitations allowed her to focus. Suddenly all the choices weren’t there anymore and that was oddly empowering. Her vision wasn’t clouded or distracted by options. When your choices are taken away – you can clearly see what it is what you really want. The injury didn’t erase possibility -it crystallized her goals. What you want is right in front of you. Go get it.  

I heard this and stopped mid stride up the hill. Pause. I began to think about my own approach to Amichai and the messages that I try to impart. Amichai knows he has CP. I am never shy in explaining to him – and to others for that matter – what that means, but I am always careful and deliberate in the words I use. I believe in my kid. I need to make that clear to everyone and anyone – especially him. The words I choose reflect my optimism and conviction that he can do anything. I use words like challenge and potential because they represent that optimism. I use them so that Amichai will understand he is capable and strong. I use them so that other people will learn disabilities are not disabling. Conversely, I specifically avoid the word limitation because it is negative, pessimistic, and defeatist. I don’t want Amichai to have any part in that. I believe in this approach. I believe in surrounding Amichai with positivity and encouragement. But if I dig a little deeper, I must admit there is a part of me that is also protecting Amichai from my own fears. I am afraid of succumbing to limitations.

If you read this post, you will know that as an athlete, coaches taught me to bulldoze through limits at any cost. They don’t exist. I built my reality around this idea – that nothing can stop me, that nothing is too hard. Its easy to believe this at sixteen, seventeen, even twenty – when the greatest barrier you face is running endless wind sprints. Life hasn’t shown you hard yet. But rest assured, it will. Life will show you adversities, it will show you limits. Life will show you CP. And even with all your optimism and all your belief in the child you love deeply and profoundly – you will understand that you can’t just power through it. Hard work will get you far, but the limitation will always be there. The limitations are real and tangible.   And that will scare you. What happens if you accept that there are limits? Does that break your will? I fear that if I would even dare to use the word, to admit to it – I would somehow weaken my resolve, his resolve to take on the challenges that lie ahead. I fear it so much so that there is a voice in the back of my head screaming at me to take it back. There are no limits. Don’t give in. Don’t let it win.

The thing is though, it only wins if I continue to define limitation in that very limited scope. Nichols has opened my eyes to the intricate architecture of limitations. A limitation doesn’t have to be a negative force in your life. A limitation doesn’t have to be a barrier, but rather a door that unlocks an unlimited world of possibility. With less choice comes more power. A limitation can be a tool to sharpen your will, to sharpen your capabilities, to sharpen your drive in making bold moves because you know exactly what you want. A limitation can ultimately release you from the harnesses that were holding you back. I breathe deeply as I read this over. I feel more settled. I am no longer at war with a word that has haunted me, a word that I feared would haunt Amichai too. My perception has changed. I’ll embrace the limitations and I’ll teach Amichai to do the same – knowing that it will not weaken our resolve but set it free.

And therein lies the catch 22 of having a child with special needs.  In the best possible way – our children are always under a microscope. Every movement, every look, every act of behavior is dissected and examined in order to ensure that the most effective options for treatment are employed…but the flip side – our children are always under a microscope. There must be a discussion and interpretation of everything. We are always zooming in to get a closer look. You know in middle school science class, when you turn the dials of the microscope to adjust the onion cell slide – there is a point just after you reach the clearest image that if you turn the dial the tiniest bit more – it becomes blurry again.With all the good intentions of staff members and therapists – their poking,prodding, and willingness to look at every angle – they sometimes turn the dial waaay past the point of clarity, so as parents, we are left in a slightly blurred and confused state.

I get confused when they tell me Amichai occasionally cries after drop-off in the morning. He’s five, he’s allowed. I get confused when they tell me each day as Amichai enters the classroom, he first looks around –surveying the scene, making note of which friends have already arrived. He then carefully chooses a game or toy he wishes to play with. This seems like something I would do – getting a lay of the land and then making a well-thought-out decision. I get confused when they tell me that Amichai has a strong preference to the color red. Fire trucks are red. Apples are red.Superman’s cape is red. All things that Amichai loves. I wonder what I’m supposed to do with this information. And then I wonder, even in these days of hyper/helicopter parenting – are these the issues that are brought up with other parents whose children are in a mainstream educational framework?

When I was in second grade, there was a rumor going around one morning. Nostradamus had predicted the world was going to end that very day. I got myself so worked up that the teacher sent me to the school nurse/lunch lady. She called my Mom at home – she wasn’t there. Seeing that I was in a bit of a state, they called my Dad at work…a big declaration of urgency in those days. He was on his way. It is one of my father’s greatest joys in life to remind me of this moment. He imitates me with precision. He describes walking into the school office and seeing a blonde pig tailed kid on the edge. I look at him with a bit of crazy in my eyes and just begin to hysterically blurt out in a high-pitched squeak – the world is going to end, the world is going to end! My father was half amused, and half flabbergasted that his child would believe such illogical nonsense. He calmed me down, took me back to his office and periodically would reassure me – you see, the world is still here. The thing is, I had a major meltdown and the school seemed to be ok with it. I don’t even think my teacher called to make sure I was alright.  Everyone recognized I was a little kid, I got scared – end of story. The only reason we still talk about is because my father likes to laugh at my expense.

But a child with special needs isn’t always given the benefit of the doubt as I was of just being a little kid. And I get it –overlooking or ignoring can be gravely irresponsible. The thing is though, Amichai has so much on his plate – can we leave off anything? I always think that he is the hardest working five-year-old on the planet. Physically there are challenges he tackles every day with grace and resilience. But there are emotional challenges which I am just starting to appreciate. Amichai started meeting with a child psychologist who is helping us work through these challenges. The psychologist explained to me that children like Amichai – hemis – are very aware of the differences between the two sides of their body. One side is completely functional, the other is not. Emotionally, this can put a child at odds with himself – leaving him feeling completely capable at times and then confused and frustrated at others. I’ve never seen this outright frustration with Amichai, but it doesn’t mean it’s not there. It’s a legitimate experience and one that I want Amichai to feel free to express as well as develop a narrative that gives him confidence in his abilities. It is an essential piece in his overall emotional well being and development.

As if learning to cope with CP isn’t enough, another goal of the therapy is to give Amichai the necessary tools to deal with the unfortunate tensions a child of divorce experiences. Amichai needs his own set of skills and system of managing the stresses. To be clear, I have no regrets. I feel secure in the choices I have made. I feel secure in knowing that our lives are better because of those choices. And while there are moments when I wish I could take all these challenges and put them on my shoulders, I also know that Amichai is not a child to pity. While the matters can be complex and intricate, addressing the issues head on is the only way to go. Amichai is getting what he needs in order to gain a healthy perspective. This too is an essential piece in his overall emotional well being and development.

Still, it’s a lot on his plate. Like I said – the hardest working kid I know. And maybe it’s a lot on my plate too. Raising a child is hard – hands down the hardest work I have ever done. And perhaps raising a child with special needs is a tad harder. The needs are real and intense. They keep you up at night sometimes, worries and concerns that never shut off. When the smallest of issues are raised, issues that would normally be waived off as kid stuff, that parent is left wondering in her mind what more can I do? Maybe for our own sanity as parents, there are things that can and should be overlooked.A child with special needs is first a child. So, when I see that Amichai has an obsession for all things red or my friend complains that her two-year-old son isn’t sleeping – can you just give us this one? Don’t waste your time trying to bring these issues into focus too. For one moment let the parents be (regular?) parents, and let the kids be kids.

My grandfather passed away last year on Chanukah – one month shy of his 90^th birthday. He had been struggling for weeks and I was prepared, or as prepared as I could be. I had one last conversation with him and said goodbye – whatever that may mean. Still like my grandmother, the news of his death left me breathless and then left me empty. As I sat waiting for my flight back to the states, I read some thoughts on Chanukah to distract me from the emptiness. My grandfather was always up for a laugh and the last thing he would want was me sitting broken, staring out into space and letting the nothingness consume me. I came upon an article that resonated deeply and has stuck with me since.

The author of the article explores the concept of miracles –what constitutes such an event and how we assign meaning to it in our lives. He relies on the philosophies of Rav Soloveitchik to define the essence of a miracle. Rav Soloveitchik taught that, “it is not always necessary for an event to be miraculous in order to be great, and not every miraculous event is a great event.” A miracle doesn’t have to be supernatural or awe inspiring. A miracle simply needs to be seen. When you see something – peer down deep below the surface and recognize the significance of it, that you have no choice but to change because of it – than that event is a miracle. The author explains that the real miracle of Chanukah wasn’t the victory of the few over the many, the weak over the strong or even a days’ worth of oil lasting eight – the miracle was that the Jews saw it, they internalized it and were changed because of it.

As I read this, I thought about my own relationship with my grandfather. While not miraculous, it certainly was a gift that I know was unique.Some of my most vivid and happiest memories are with him and my grandmother. I had to acknowledge that gift – be thankful for the impact it had on my life and how I was changed because of it. I thought about how many people we meet in our lives, how many events we witness, how many experiences we amass. Were they all miracles? I thought that if the actual event of a miracle is somewhat inconsequential, then the awe inspiring or supernatural component must really be up to us – are we capable of seeing it, are we willing to see it. And conversely, how much are we missing?

I know before Amichai was born, I missed almost everything.When I was pregnant, I thought I got it – I mean there was a life growing inside of me, you would think it’s kind of hard to miss – but I did. Doctor appointments would come and go – everything was good, everything was standard.I didn’t see that everything being standard was actually a miracle. And I think most parents-to-be are like this. Technology and modern medicine have tricked us into believing that the creation of life is quite ordinary – even mundane.Millions of women are pregnant each year. No big deal. It was only after the fact, when I found myself in the NICU – watching Amichai fight, watching other babies fight – and sometimes lose – that I started to see, that I started to appreciate the complexity of it all, that I started to understand the miracle.

And I started to see even more when the doctors told me Amichai had suffered a stroke. Come again? They said this was not standard.Thanks. But the thing is, even as they kept saying the injury was significant,that he has CP, that most statistics point toward a life of disability, that it would be hard, that they could understand feelings of disappointment and even failure– the whole time the one constant thought in my head was – but he survived. The doctors themselves kept hounding on the fact that adults would not have survived such a dramatic injury; yet, here was my kid – alive,breathing on his own, kicking, eating, and gripping my fingers tightly –holding me up as much as I was holding him. The challenges ahead were scary,unknown, and daunting – so much so that in the days and weeks to follow I experienced anxieties I never knew existed – but in that moment – why couldn’t the obvious be seen? He survived. From that point forward, I simply refused to shut my eyes, and there was a clarity of vision within the darkness.

I would not wish any parent to go through the trauma which we experienced, but oddly I feel fortunate precisely because of it. The miracle in the trauma was that it forced me to take notice, it forced me to see that there is greatness in the mundane, and it forced me to see extraordinary effort in every day accomplishments.  Amichai is hemiplegic which means that he has high muscle tone that runs down his right side. His most challenging aspect is the use of his right arm and hand. At three months, he started physical therapy. One of the first exercises I worked with him on was having him lie on his back and reach for a toy with his right arm. I would do victory laps when he would reach up and tap the ball. Pure happiness. I have thousands (literally) of videos and pictures just of Amichai reaching up. And a thousand more when he started to grip objects with his right hand. And yet still more when he started weight bearing on his right arm. When he started crawling. When he stood up for the first time on his own. I don’t even need the video – I can close my eyes and see him slowly getting up, a little wobbly, a little unsure about what it is he’s actually doing – and then he’s up – laughing uncontrollably, smiling with pride. All parents I imagine experience this same excitement, but it was so momentous for me because I had come to understand that these milestones aren’t a given, that sometimes they are anything but standard… I can hear myself laughing with him. Celebrating with him.

And still today, every time Amichai opens a draw with his right hand or walks down the stairs consecutively – even jumping off the last step – these are major moments of celebration. We dance, we give each other high fives, we do a victory lap together. I hope our enthusiasm never wanes. My database of pictures continues to grow. Every day moments that have been elevated. And if I don’t always notice at first, Amichai is certain to point it out. We will invariably always be rushing around in the morning, trying desperately to get out the door. He will stand there in front of me – holding a shoe in each hand. Come on, I say – we are late. And he still stands there, not moving. Finally, I figure it out – Two hands! Yes, you did it! And then he starts laughing uncontrollably, smiling with pride because he knows – he knows these aren’t givens. These are miracles.

Amichai taught me how to see them.

Fast forward four months later and I am sitting in a meeting with three doctors who are explaining to me – to me – that my son would never be an athlete, or at least a good one. Or an artist. Or a musician. Or anything that required a set of normal motor skills – that wasn’t for him. One doctor, in an attempt to be encouraging said there was child in his own son’s boy scout troop that has CP. He said not to worry, all the children clap when he is able to jump over a stick. Intentions were pure, execution poor and patronizing. My child is not a pity party. I don’t think the doctors were trying to be intentionally negative, they simply were presenting statistics and their own professional experiences based off hundreds of CP cases they had diagnosed or treated. They weren’t consciously saying to set the bar low, but perhaps they were simply trying to manage expectations. I did find it perplexing though that of all the questions they couldn’t answer – somehow, they could definitively tell me what Amichai wouldn’t be able to do.

This angered me.

And still, I continued to hear this sentiment over and over again. At his six-week check-up with the neurologist, at his three-month check-up…he’s doing good – making progress, he won’t be a good athlete but…It’s as though they didn’t see the mother decked out in Nike clothing in front of them. The thing is, I didn’t need Amichai to play sports. Even though friends and family had (jokingly?) pegged me for one of those over-zealous and crazed parents on the sidelines, I always knew there was a chance that my kid would not be drawn to sports in the same way I had, and I would be ok with that. His interests won’t be the same as mine. That being said, I certainly didn’t need anyone telling me that he can’t play sports, that he wouldn’t excel in something he hadn’t even tried yet. How can someone else – even if that someone else is a doctor – define what you can or can’t do? Even crazier, how can they define what a little baby can or cannot do so early on in his life?

This wasn’t the first time in history that doctors or medical professionals expressed some archaic idea about who can and can’t play sports. My own gender was subject to their inaccurate beliefs. Women were often targeted as being too weak and ill equipped for physical activity.  Doctors warned of young girls and women over-exerting themselves in sport. When women first started playing basketball, medical professionals were concerned they would collapse in “nervous fatigue”. Apparently, a woman has enough strength to push out a baby but it’s too dangerous to have her run the full length of a basketball court. Luckily, I grew up an era where those beliefs and myths had long been laid to rest, and I was given every opportunity to play sport. And that is what I want to give Amichai. I want him to know that if he wants to play sports, the opportunity exists equally for him. I also want him to know that if he finds a sport that speaks to him, its ok for his execution of it to look differently than a “typical” athlete. The way his body works is different, but still very capable.

Like any five-year-old, Amichai will always choose running over walking. He runs down supermarket aisles, he runs to grab a toy from his room, he runs to water the plants outside on the porch, he runs to get a snack from the drawer, he runs to the park, he runs at the park…the only thing he doesn’t do is run to bed, somehow then his pace slows to a procrastinating crawl. Someone once remarked to me that Amichai would have his own Forest Gump moment one day, running so fast he breaks free of the braces. I smiled because I knew this person was trying to convey something positive, but I’m not sure that’s how it works. People with CP don’t magically break free from their braces. They work harder for their steps than the average person, training their body to work in a certain way, demanding tasks of it that do not always come with ease. Amichai runs with a slight degree of asymmetry, the right hip always a bit behind the left, the right arm moving with less freedom than the left – but there is a lightness to his step, and a rhythm to his pace. He runs with confidence. And for me, that is the actual magic.

I saw this magic too in another runner last week when every platform I use for messaging suddenly became clogged with the Nike video of Justin Gallegos. No one does it like Nike – they can capture a story and convert the masses to believers in less than two minutes. They manufacture magic. But this time – the magic was all in the kid. I recognized the uneven stride immediately, but I also recognized the gracefulness in his determination. He may run differently but who cares because he runs with confidence. It’s not about running the same way everyone else does, it’s about taking ownership of your way and saying it will take me to where I want to go. This wasn’t some fictional movie character breaking free from the braces, this was a kid who put in the work and simply said I am capable, I can do it. Take that Forest Gump. I promise you, this is not some Nike marketing ploy – this is as real as it gets. It was real for me, and it was real for Amichai. He smiled excitedly when he saw it, no doubt seeing himself in Justin. A capable person in a capable body. Just do it, right?