Amichai turned five two weeks ago. He’s been quick to point out that five is a whole hand. Like any kid, his birthday is pretty much a big deal and he’s showered with an obscene amount of presents. But each year when his birthday comes around, I inadvertently find myself marking the days after his birth as well. What happened when. A timeline of trauma. July 31: born Aug 1: Eye Infection Aug 2: Oxygen desaturation levels drop, blue baby Aug 3: Still turning blue, rushed to NICU Aug 4: Intubated, ultra-sound followed by MRI Aug 5: Diagnosis. I don’t try to put myself back in that situation, it just happens. The stress, the anxiety, the feelings of drowning in a sea of unknown – they all start to creep back in my mind. I’ve come to accept it as natural and unavoidbale. I let it all wash over me, but I don’t stay there for long.

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.