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.

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.

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.

I loved everything about this interaction. I loved that she was staring at his brace for a while. Staring isn’t always bad – kids should take notice of something out of the ordinary. I’m assuming she had never seen a brace or maybe not close-up like that, and she was just glancing with curiosity. I am not saying to gawk or point, but it is ok to be aware of the people surrounding you…and if something looks different – ask. And she did just that. A genuine inquiry, a request for information. We can sometimes fear what we don’t know, but if we don’t ask, that fear can just fester and grow irrationally. She just wanted to know and understand. I also loved that her Mom gave her the freedom to ask. Parents are often on edge that their children will somehow offend with inappropriate questions or comments.  She was not shushed, quieted, or told its none of her business. And lastly, I loved her reaction – cool. She didn’t see disability or difficulty. She just saw the brace for what it is, thought it was pretty rockin and then said goodbye to her new friend Amichai.

It was a scene straight out of a Mr. Rogers episode. Real warm and fuzzy. But is this reality? Can I expect that all interactions will be pleasant teaching moments? And what happens if they’re not – how do I prepare Amichai?

My belief that Amichai is child with immense capabilities is not just hyperbole. I know – I know, he can do anything. He has shown time and time again that a physical limitation will not stop him. I know this, I feel it, I live it with everything I am. But as much as I can instill this belief in Amichai, to continue developing and cultivating it within him – I also know that I cannot control how other people react, what other people will say. I remember sitting in the lounge area outside the NICU after Amichai was diagnosed. It was all very tranquil – the sunlight poured in through the rounded glass windows overlooking the Jerusalem forest. I wanted to scream into the forest. My parents – ever the cheerleaders, were pumping me up. You can do this – you were trained for this moment. He can do this. He will do this. Nothing will stop him – you know this. I did. I didn’t even know Amichai yet, but I knew this. Still, I found myself suddenly blurting out – yes but kids are cruel! I was expressing a dark fear I hadn’t even wanted to say out loud because I didn’t want to give it credence: What if kids make fun of him because he’s different? My parents looked at me with shock. It’s a look I recognized from my teenage years when my sisters and I would purposely say something which would gravely disappoint and set them off…my younger sister seemed to have real knack for this, still does. Oh Gd. I’m in trouble. Where is this coming from?! Who told you that?! Why would you even say something like that? Who taught you to think like that? We didn’t teach you to think like that.

I think my parents’ reaction was based on a few different factors. First, my parents taught us to be understanding and accepting people. Cruel behavior toward others and making disparaging remarks about anyone is simply wrong. Any upstanding parent teaches his child the same. Second, they taught us to know who you are and stand tall. If someone would ever make disparaging remarks toward us – well, that’s their problem. Don’t let the words or behavior of others bring you down. Third, I think my parents were trying to slow me down. Amichai was just a few days old. Let’s not jump to any crazy conclusions or imagine unwritten scenarios. And lastly, I think they were probably activating their own parental instincts to protect their child and tell me bad things won’t happen. If I wanted to protect Amichai from all the evils in the world, they were doing the same.

But they know the reality. My parents raised four children and while they wouldn’t categorically define kids as cruel (I wouldn’t either!), they know sometimes there is at least one kid who says one stupid and thoughtless thing. Even if you have raised the most confidant of children, that can still be scary for a parent because you know it will hurt. Your child will hurt.  I’ve been there as a kid. I’ve even been there as an adult, and I don’t think it was easier for my parents to watch regardless of my age. But there can be something elevating in that moment. It’s not that I would ever want Amichai to be in a situation where he is Gd forbid bullied or made to feel less than what he is. That is categorically wrong and intolerable. But an inevitable encounter with some jerk at some point in time? It will happen. Instead of fearing these moments, what if we embraced them? What if we used them to learn about who we really are? Do I really believe in me? Everything that I was taught, everything that my parents tried to instill in me about who I am, my infinite strength, my infinite worth – do I believe it? Am I going to truly stand tall or am I going to let this jerk get to me? You must make a conscious choice to rely on your own truths and filter out the noise. These might be unpleasant situations, and I hope that one does not need to face them again and again, but they are breeding ground for character building.

Protecting your child comes in so many different forms. I will never put Amichai in a situation that is harmful or dangerous – be that physically or emotionally. But protection also comes in the form of giving your children the right tools to face the world. So, in the same way my parents taught me, I will continue to cultivate his confidence and belief in himself. I will continue to instill him with the knowledge that his strength comes from within and that is priceless. I won’t pray for the day Amichai encounters a jerk, but if he ever does – I’ll pray he has the proper perspective and uses it as stepping stool for greatness…and equally important, I’ll also pray that society continues to evolve – that differences are seen, understood, and appreciated. I will pray that more little kids stop, stare, ask, and then see Amichai for what he is – another friend.

Truth be told, the weeks after Amichai’s birth weren’t much better either. That’s when my anxiety really started to kick in. I wanted to learn everything I could about CP so I started doing some initial research. I googled cerebral palsy and pediatric stroke. Big mistake. I remember coming across websites that were loaded with information, but it wasn’t information I was ready to hear or even understand. Honestly, I don’t even think I was looking for hard facts and statistics. I think what I was really searching for was a picture of a kid with CP. Maybe at park, with the sun on her face. With a smile. I needed a visual, I needed to see that it was going to be alright. The closest I came was reading one article about the challenges of teaching teenagers with CP how to drive… or if they even can drive at all. This is it? This is all they can offer me? I almost went into a full panic mode.  Amichai couldn’t even hold his head up yet and suddenly I saw him as a sixteen-year-old kid missing out on a classic rite of passage.

Breathe and shut down the google.

So much has shifted and changed since then. For the better. I have a million pictures that can document that progress. The pictures I was so desperately searching for began to fill up my phone. Amichai holding up his head. Amichai feeding himself. Amichai sitting up. Amichai crawling. Amichai laughing. I decided last year to do something with those pictures and started Amichai’s 30 for 30 birthday build up. Everyday – for 30 days leading up to his birthday -I posted a picture or video of something he can do. I did it because the kid makes me proud every single day. I did it because I wanted others to really see and understand CP. But more than anything, I did it because maybe, just maybe there was another parent out there who was in the same position I was, scouring the internet looking for something beyond the cold facts, looking for something positive – and they would see Amichai. I hoped that they would see what I needed to see a few short years ago. Just a kid – a happy, silly, kid with the sun on his face. Its going to be alright.

I did the same thing this year for his birthday, with the same intentions and hopes.  I took pictures of him brushing his teeth with his right hand, climbing up ropes at the park, riding his bike on the sidewalk…and from the community of parents that I have connected to, I know it means something – just as their own pictures offer me strength, motivation, and encouragement. (Perhaps this is where social media is at its best…) But then there was one photo I caught that made me pause. And smile.  Amichai hopped into the front seat of my car one day after we had parked. (Car off obviously!) He grabbed the steering wheel with two hands and then he took his right hand and pushed the indicator down. The boy is driving. Snap.

I was immediately transported back to that day when I had a meltdown after reading about driving and CP. I wished with everything I could have shown myself this picture then. It would have made me laugh, it would have made me wipe my tears away, it would have made me gain perspective. To be clear, while my hopes are that Amichai will one day drive – I know very well that this is no indication of that. But what made me pause, and eventually smile is simply seeing and accepting the process. I know, I know – of all people I should fully embrace the “it’s not a sprint, its a marathon” mantra.  I can literally see Amichai getting stronger every day – thank Gd. He’s doing things he wasn’t doing a year ago or even a month ago. The progress is tangible. But forward motion comes in other forms as well. Five years ago, I had to ban myself from the internet because it was too much to handle. In fact, if I could give any piece of advice to parents who are just beginning this journey it would be to impose a similar internet ban. Just take pictures – take lots of pictures. Pictures are the evidence you need to start understanding your reality and feel comfortable in it. When I started to do that, I found I could open up my browser again without breaking into a sweat.

Trust the process – that’s how we roll in Philly. Five years into this process, we are still at the very beginning. I know that where you start is not where you end up. There are miles and miles to go in between. The picture looks dramatically different when all is said and done…and even then, there are always more photos to snap.

If you want to see a mother fight fiercely for her children’s needs, just take a look at my older sister – whoa. She is the ultimate advocate for her kids. I’ll take a small amount of credit for providing early training ground. Family legend has it I refused to talk to anyone else but her and I would whisper in her ear something only she could interpret. She would then spring into action, ordering people around and telling them what I needed. Bossy Pants. But it served her well, because when it comes to her four children and their needs …whatever the issue, just step aside. She reads, she researches, she consults with every expert and looks under every rock to see where she can gather more information. And when she formulates her opinion as to how each need should be addressed, she works with clarity and does not waver. Bossy pants in full effect.  (Just to be clear, my brother-in-law certainly plays a role as well…I got you J.)

From the moment Amichai was born, and even more so since the moment he was diagnosed, I tried to take a page out of her book. I read, I researched, I consulted with experts, and I looked under every rock to see if there was more information to be gathered. I wanted to be on top of the latest treatments and therapies. No doubt, this was an important step – one that I continue today, but in my initial haste – I skipped over the most obvious place to start: Amichai. Before diving into the studies, I had to first study my kid. I had to understand what his needs are not only from a CP perspective – but simply what his needs are as Amichai.  And when I got to know Amichai, when I got to get him – I had a deeper comprehension of how I needed to advocate for him.

I thought the focus of my advocacy for Amichai would be relegated primarily to dealing with his CP. That’s mostly accurate. I’ve always looked at Amichai’s work with his therapists as a partnership of three. I try to provide them with insight into his personality – what motivates him, what bothers him, what excites him, what challenges him…I also do not hesitate to give my opinion about what methods work best on Amichai. In my experience, any good therapist will welcome this information. Parents know their child best, and so as much as I rely on them, they also rely on me to ensure the most success. We evaluate and modify together.

And the truth is, I feel confidant advocating for Amichai in this realm. I come from a world where I understand how the body works. My own professional works requires that I sometimes work closely with PTs to better help my clients. I understand what effective training is and I understand the ins and outs of all the exercises Amichai needs to perform. I understand how and why his hips need to be supported when he climbs up a ladder and why it is important to rotate his forearm out (supination) when stretching. I speak the same language. I get it, and I think – without getting too philosophical – it is perhaps one of the reasons Amichai was given to me. From this vantage point, I was meant to be his advocate.

The thing is, Amichai has other needs…needs that don’t always fall neatly into my comfort zone. Most pressing on my mind these days is helping him develop coping mechanisms that a child of divorce will inevitably require. Even in the most amicable situation, I imagine children will still experience the stress and tension that comes with their parents splitting up. And right now, Amichai is noticing that and experiencing that. He needs to develop his own methods of management.

I wish he didn’t have to do this. I didn’t want this for him… but the alternative of staying…I didn’t want that for him either. Maybe leaving was my greatest act of advocacy. I keep those thoughts in the back of my mind now as the suggestions mount on how to tackle this issue. There have been ideas put forth by Amichai’s school. I am grateful for their help and attention, but even by their own admission they seem unsure of how to proceed, what path to take – how involved should they even be? They need to maintain a delicate balance of providing care for Amichai but also not bringing matters outside the school into the school. I have nothing but high praise for them and the dedication they display toward Amichai every day – but perhaps this is not the venue to address this specific issue. These are all topics of recent discussions and ongoing meetings.

What I am certain of is my role in all of this. Over the past few weeks, I’ve had various conversations with staff members at Amichai’s school. I surprise myself with the level of straightforwardness with which I speak. I consider myself assertive, but not pushy. I am a confident person, but never cocky. I have a voice – yet, I don’t need to be the loudest in the room nor do I care to be. But with Amichai – and specifically on such an important issue where we are talking about the emotional welfare of my child – I’m leading, and I make no apologies. I’ve realized that my comfort zone is Amichai. Whatever the subject matter, I feel confident in my ability to make the best decisions for him. No doubt, it’s a heavy responsibility, but I wouldn’t want it any other way… because I know him, I understand him, I get him. I was meant to be his advocate.