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.