Part 4:Hemi-What?
On Monday August 5th, the pediatric neurologist sat us down. The doctor who had treated Amichai in the NICU was also there as well as my friend’s father. He was mostly there for support but also to ask questions we did not even know to ask. I am eternally grateful for everything he did.
The pediatric neurologist explained that based on the MRI scans, Amichai had suffered a stroke. In the simplest terms, a stroke is an injury to the brain. He described Amichai’s stroke as “neo-natal” meaning it happened some time in the birthing process – before, during or immediately after. The exact moment is unknown. The doctor went on to say that the stroke had specifically injured the left middle cerebral artery of the brain. And then he gave the diagnosis: Cerebral Palsy – hemiplegia. Hemi-what?
I would be lying if I said panic did not set in. I had a vague understanding of Cerebral Palsy but what in Gd’s name is hemiplegia? It certainly did not sound good. To be in a panic and have my thoughts unorganized is very unnerving and unsettling for me. Some people thrive in chaos and emotional storm – I work best when I’m calm. I needed to ground myself as the doctors were flooding me with information. So, I did what every coach has always told me to do – focus in. It was all I could rely on to gain control as everything seemed to be speeding past me. Focus in, I kept telling myself. Slow the game down. Take each bit of information as it comes. Just. Focus. In.
And so I got a crash course on cerebral palsy. I learned that cerebral palsy – or CP – is a blanket term that describes a neurological disorder caused by an injury to the brain or other malformations that occur as the brain is still developing. I learned that while the brain injury is non-progressive, the injury is nonetheless permanent. I learned that CP primarily affects muscle tone, muscle coordination, and body movement. I learned that there are many different types of CP. There is quadriplegic, triplegic, diplegic and finally hemiplegic – Amichai’s diagnosis.
Hemiplegia is a form of CP that affects just one side of the body – the side opposite the affected part of the brain. The stroke damaged Amichai’s left side of the brain; therefore, his right side that would be affected. He was quickly categorized as hemi-right. I learned that hemiplegics experience anything from a weakness in the hand or leg (or both) to total paralysis of the affected side, but I also learned that the doctors had no way of predicting anything. I learned that the overwhelming answer to all of my questions was – We can’t know yet. This is to not say I wasn’t grateful. The doctors and staff that treated Amichai were top rate – the nature of the injury simply did not lend itself to immediate answers.
I remember asking one more question – what about the eye infection? Unrelated they said. Or was it? Because if he didn’t get the eye infection, he would have come home, and if he would have come home – would we have seen him turning blue? Would we have caught it in time? Would we even have known what to do? What if the eye infection saved him?
I clung to this idea and tried to remain optimistic; yet, I had no real clarity. I learned that I simply needed to wait – wait to see how he develops in order to get a clearer picture. That’s it? That was the plan?
Actually, it involved a little more. Amichai stayed in the NICU for another week and half. He had an EEG and his brain activity accurately reflected what one would expect after a stroke. While he did not experience any other seizures, he was put on anti-seizure medications. (He was eventually weaned off one medication after 6 weeks and the other after 3 months.) The breathing tube was taken out and he started nursing. These were good things…but still there was the anxiety. What did the future look like? What would be his challenges? What would be his needs? Were there any signs or indications of what was to come?
And then a few days after he was diagnosed, I saw a sign.
This was one of the first vidoes I took of Amichai and it remains my favorite. The nurse had just placed those cards in his crib, and as he experienced seeing these images for the first time, it was like literally watching his brain light up. There he was. That’s him. I saw him fighting and I learned that he was resilient. I saw the drive and determination, and I learned that – while I was still frustrated by the unknown, I was no longer scared. Resilience, drive, determination – those are intangibles in life. Those qualities will take you wherever you want to go – and I learned that he had them.
Those facts served as the foundation of my reality. Since that moment, I have relied on them more than anything else. Any ideas about what I thought CP was, any fears I had about disabilities -what it might do or not allow you to do – they slowly dissipated. Disability faded and all I saw was ability. I have allowed Amichai’s own strengths to lead the way. I witness him do everything and anything he wants to do. To be clear, Amichai is where he is today because of early intervention and the continuing fabulous work of his very talented physical and occupational therapists. It does indeed take a village, but the will he displays – that’s all him. He runs, he jumps, he climbs, he rides his bike, he swims, he plays with his legos, he builds with blocks, he colors with his crayons, he pretends he’s superman, he laughs all the time… He does all of it because he believes he can. Sometimes its challenging and not everything is accomplished in the “normal” way – but he does something better than normal. He adapts, he thinks outside the box – he creates his own normal.
We are still in the beginning chapters of this story, but I am so very hopeful.