I ran through the desert last Friday morning. The race started early – like 3 AM early. The idea was to run a half marathon along a winding, twisting road that ended at the foot of Masada in time for sunrise. It was a beautiful run. The silence of the night, the looming mountains illuminated by the full moon, the quiet rhythm of the runners. Perhaps my best run so far.

I was never a runner. I did my fair share of 10ks, but nothing more than that. And then about two years ago I started taking it more seriously. I signed up for my first half marathon.  It is absolutely no coincidence that it coincided with my decision to get divorced. I have always used sports as an outlet for stress, and I needed something to just let it all out. Short of starting my own fight club, the running certainly helped. Nothing like pressing forward up the hills of Jerusalem to release everything inside of you. But more than that, as I began to train – it was like I was running back to myself.

I’m not sure if I ever experienced the runners high, but I do know that with each kilometer I tacked on I felt better about where I was in life. I could hear my voice coming back. Pushing me, pulling me, sometimes dragging me to just keep going. To take everything and just say – screw it, it can’t break me. I started to believe myself again when I said I could do anything – and I no longer felt like a phony when I told Amichai that he too could do anything. I was finally showing him who I was, he could see me now…and more than anything, that is what has driven me to continue running.

Running is all about you vs. you. That’s what I enjoy. I’m an average runner at best. I can do a half marathon in under 2 hours and my first full marathon I did in a little over 4 hours (rookie mistake of starting too fast…its not a sprint, it’s a marathon…) Nothing special. No doubt, I’ve improved and gotten faster over the past two years but I’m not breaking records here. Its just me testing myself each time. Can I keep going even when I am miles past my breaking point? Every long distance run will inevitably present challenges, will inevitably present a certain degree of pain. How much am I willing to endure to reach my goal and how deep can I dig? Do I have it in me. And that’s what I want Amichai to see.

I want him to see that its ok to struggle. I want him to see that I struggle… specifically with something physical…because while I can sink a foul shot with my eyes closed or break an opponent’s ankles with a cross-over (or at least I used to in my younger days…) it doesn’t mean that everything is easy for me. I’m not a natural runner in any way, but you know – I can still try. I want him to see that its ok to commit to something that might be very hard and even at times downright unpleasant. I want him to see that that even in those agonizing moments – when your body is screaming and cursing at you to quit – you can retreat to the peaceful solitude of your mind that tells you to just. keep. going.

And then suddenly, when you think that this is really it, that you have nothing left to give – you turn the corner and see the sun rising.

You see it Amichai?

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.

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

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

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

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

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

She was right.

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

A friend of mine is in the midst of checking out special education preschools for her little boy. She went to visit one the other day and described to me how kind of taken aback she was when first stepping in the building. She was overwhelmed with what she saw and had a hard time processing all of it.

I remember that feeling well.

For the first year of Amichai’s life, I juggled my own work schedule around Amichai’s therapy (PT and OT) schedule. When Amichai was about eight or nine months old, his PT suggested that we place him in a special education preschool for the upcoming year. Huh? My limited perception and understanding of special education was reserved for children with learning disabilities.  As far as we knew, those were not Amichai’s challenges so what exactly was she talking about?

She explained that special education includes physical disabilities as well. (As I read over this line, I am shocked at my obliviousness and downright ignorance.) Amichai’s PT worked at a preschool that provided various therapy sessions throughout the day – whether that was one on one or group work. Plus, the teachers and staff were trained by the PTs and OTs on how to engage the kids so that even within the context of play, the children were getting in extra work. She felt that placing Amichai in this type of environment would really give him a push forward. Every day he would be getting consistent and intense therapy.  This all sounded good to me, but it was still hard to get past the title of Special Education. What did that really mean? What did that look like? She encouraged me to visit the school.

Like my friend, the first time I took a tour of the school I too was taken aback. I too was overwhelmed when I saw a row of little wheelchairs and walkers lined up outside a classroom. And I was overwhelmed again when I walked into that classroom and saw kids fitted in leg braces and sitting in chairs with safety belts. There was one little girl wearing a helmet. I felt my eyes widen a bit, and I started to look away. Wait a minute. Wait a minute. Am I in the right place?

For close to a year, I had gained a deeper understanding of what CP is and how it specifically affected Amichai. I accepted what happened and I tried with everything that I could to embrace the challenges that it presented – to teach Amichai that nothing can stop him. I believed in what I preached to him, but this – wheelchairs and walkers? safety belts on chairs? – Amichai didn’t need these things. This was not our world. This world was scary.

When Amichai is scared, I tell him that its ok to be afraid. There are things out there that can make us jump I tell him. But once we understand that it’s only a loud noise, or its just dark – well than maybe we can see it’s not so bad after all. And maybe next time it won’t be so scary. Also, it helps that he holds my hand…

If I was going to teach Amichai how to get over his fears, I had to do the same. Why were the wheelchairs and the walkers and the helmets scaring me? Why did I look away? Because at that time, to me – they just represented disability. It wasn’t that I was in denial about Amichai’s diagnosis. I knew what the challenges were, but because I wittnessed his accomplishments every day and the determination he displayed – I never thought (and will never think) of him as disabled. And I certainly did not want Amichai to live in a world where he is defined by disability. This was not our world.

What I learned though was that the school didn’t place itself in the world of disability either. The entire staff – from teachers, to therapists, to the guy who builds those seat belt chairs – they all live in a world of potential and promise. They see these little kids with their whole lives before them and are deeply committed to building a strong foundation for them. They believe in their talents. They believe in their abilities, and that is incredibly empowering. When I realized this – and it certainly did not happen overnight – I was able to look fearlessly at the wheelchairs and the walkers and the braces and say – you do not scare me anymore. Today, when I walk into the school, I don’t even notice the wheelchairs. I see them, but I don’t. What I do notice, what has become for me the defining feature of the school, is how happy these kids are. They smile and laugh all the time.

It can be liberating to let go of your fears. We have these notions and perceptions as to what perfect is. Perfect body. Perfect job. Perfect house. Amichai helped me see that really, perfect is as perfect comes. Everyone is granted gifts. Sometimes those gifts don’t always come in what we perceive to be normal packaging. But you have them, they are yours – so own them. When challenges come – and they most certainly will -rely on your own perfect to see your way out…I can also say that through my own experiences, someone will always be there to hold your hand too – even when you stubbornly insist on doing it yourself.

I think, more than anything – this is exactly what Amichai’s school is trying to impart to its young students. Embrace your perfect, reach high with everything you got, and know there are always people who are cheering you on.

And I think that’s a pretty special education.

Amichai and I travelled to the states for the Passover holiday. There were many highlights of the trip. Amichai is generally treated like a rock star by my family. He is showered with gifts, his cousins mob him, his aunts and uncles compete for his attention, and my parents are simply thrilled. He relishes every minute. But there was one moment that has stood out for me from this trip – when Amichai slipped down the stairs. Bear with me.

We were at my sister’s house and Amichai called me into the living room to help fix one of his lego-men that had come apart. Since I’m Amichai’s trusted associate (I started using this term after I saw this amazingly accurate commerical a few years ago) and he knows I will place it back together, he had better things to do than wait around – so he ran off with to play with my nine-year-old nephew. I guess Amichai wanted something from upstairs, and he started up the staircase. I should point out the staircase is actually quite steep, and the steps themselves are big. Nonetheless, Amichai had really managed his way and up and down masterfully so I wasn’t worried. Two points for PT!

The next thing I knew I saw Amichai slipping down the last three stairs and bumping his head.

You know that split second of silence after kids fall – as if they are deciding am I hurt or am I really ok? Amichai decided on hurt. I jumped up and ran over. Tears, screams – the works. I picked him up and took him to the couch. My bother in law followed us to the sofa and my sister was already bringing the ice pack. My parents came with the tissues. Iroinically, it was me who ended up needing the kleenex.

Amichai was ok, I knew he was ok. He fell – not the first time, won’t be the last. There was no blood, there was no cut, there was no bump. I had picked him up and comforted him hundreds of times before. I knew the routine. But suddenly, I felt tears running down my own cheeks. What?

My father came over. You know he’s ok, right? Ya I know Dad – thanks. You know you can’t fall apart over this, right? Ya I know Dad – thanks. You know Amichai must see that you’re ok, right? Ya I know Dad – thanks.  But the tears kept coming. I hated feeling like I was failing as a parent in front of my parents. Mom and Dad – if you figured out how to “open the internet” and are reading this, these are my projections, not yours so don’t feel bad…read on, I figured it out.

To be clear, my Dad never ever discouraged me from crying as a child, but my father is nothing if not logical. Have you ever heard an adult telling a small child – It is better to light a candle than curse the darkness. I have been hearing this since I was four. So, growing up it was important for my Dad to discern for my sisters and I what really warrants tears. Crying because you can’t figure out where the peice goes in the puzzle does not warrant tears. Crying because your sister bit you does in fact warrant tears…my younger sister I swear had fangs, she bit through winter jackets. (Note: She got a hold of her biting problem and turned out to be a fantastic sister and friend.) What my father ultimately tried to teach us was that there are certainly good and valid reasons to cry but don’t lose it over the small, insignificant things – that simply does not make logical sense. Just light the candle.

I think when my father saw me crying after Amichai fell, he logically couldn’t understand my tears. Amichai was fine. He stopped crying within minutes and was already eating an ice pop and playing with his cousins. Why was I still crying? To be honest, I couldn’t understand the logic either. Totally out of character for me – to just lose it over something that I had dealt with thousands of times before? The apple does not fall far from the tree, and I too am nothing if not logical. I needed to unpack the incident and get to the reason behind the tears.

I replayed the events. I replayed hearing the thump and jumping up – no tears from me yet. I replayed picking him up and taking him to the couch – still no tears. I replayed asking Amichai what hurts and telling him its ok – still no tears. I replayed my brother-in-law coming into the room…my sister bringing the ice pack…that’s it. That’s when the tears started…and suddenly I understood why I was crying.

I’m a single mom. This is actually the first time I’m writing these words. Being a single mom was not something I ever envisioned for myself, nor wanted. But I was in a bad marriage. Very bad. I tried to make it work. I tried and I tried and I tried because quitting meant failing. Stay in the game no matter what, screw the pain. But I was losing. I was losing myself each day, and it just became too much, too dark. I had to confront my own fears and definitions of divorce. I had to draw on the lessons Amichai taught me about changing perceptions. I realized that true failure would be staying. I would be failing myself and Amichai if I stayed. Staying actually meant quitting in this case. I learned that divorce can be a blessing and I am thankful for the courage I was granted to get up and leave. So today, I am not complaining that I am a single mother – I am grateful and as Sheryl Sandberg says, I’m trying to “kick the sh*t out of Option B“- but I can still acknowledge the challenges it presents.

Without a doubt, I have an insanely amazing network of friends and family who constantly extend their support and help on every level – it is my own lacking that I do not always take them up on their offers. I can never escape the feeling that it always has to be me. I have to be strong. I cannot bend, I cannot break. If Amichai falls, or gets upset, or gets frustrated, or is just having a bad day – it is my responsibility to be the pillar he leans on even if the walls around me are crumbling themselves. I have enough self-awareness to recognize that maybe – just maybe – I set impossibly high standards no human being can attain…I should let myself off the hook once in a while…I’m working on it.

In that moment when Amichai fell, when my brother in law came rushing in and my sister had the ice pack ready to go and my parents had the tissues – it suddenly just wasn’t me. I had support and help in real time. I didn’t have to ask – it was just there. And it was so comforting… and maybe Amichai doesn’t need to see the pillar of strength all the time. Maybe he can and should see that I can be vulnerable, and I also need a little help. Maybe he should see that even the tiniest of gestures – like bringing an ice pack -provides such great assistance, a moment of relief where I could just breathe. So, I breathed – and the tears of gratitude came rolling down.

Seems logical to me.