In the first year of Amichai’s life, he had one PT session and one OT session a week. I was given homework to do in the interim – daily stretches and exercises that worked to strengthen his right side. Here’s the thing with me and homework – I have always done my homework. I have always done the task I was assigned because I believed it would help me get better at whatever I was trying to achieve. I studied hard, I didn’t cut class, and I did my homework. I did the same with sports. I practiced hard, I didn’t skip, and I stayed after for more work. I put in the time, I put in the reps no matter what. I might very well be a dork, but I found comfort in this routine. I found success in this routine. And I believe all of this – my commitment to doing what I’m supposed to do, day in and day out even when I didn’t feel like it – it was all training ground for the most important homework I would eventually be assigned.

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?