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The Day After: 10 Years Later

January 14th, 2022  | Cerebral Palsy  | Family Stories  | News  |  By Andy Chrestman


This day ten years ago was not a good day. At some point in the wee hours of that morning, about eight hours after Kohl was born, we were abruptly awoken by the resident on call. She had the misfortune to inform us that Kohl started having seizures, had to be intubated and would need to be transported to our Children’s Hospital in a few hours to have an EEG and possible MRI.

Just hours earlier, he had finally started wailing and behaving like newborns are supposed to after they popped an air bubble in his tiny little belly. He had lost a little blood during delivery and needed a small transfusion, we were told. They would keep him in the NICU that night as a precaution. We all breathed a collective sigh of relief. And now this. I will never forget the tears rolling down the resident’s face – herself a new mother – as she closed the door. That snapped me out of my initial level of shock to let me know this was serious.

Sarah, having had an emergency C-section, was resigned to the bed, so I went to Children’s with my dad and father in law, Gary, aka “G-Daddy.” That’s when shit hit the fan. Kohl had his EEG, and the resident neurologist called us back to go over the results. Her bedside manner and continuous reference to my child as “the kid” along with her pitiful attempt to explain the results to me was a disaster and I was thoroughly confused and, as I know now, in shock. The EEG showed almost no brain activity. “Does this mean he is autistic,” I remember asking. Again, I was beyond confused, and that stupid question would be funny if it wasn’t so goddamn tragic. My dad and G-Daddy, themselves physicians, clearly understood the gravity of the situation better than I. Yet this was their precious grandchild and they were likely experiencing some similar level of shock.

The MRI was next. My dad, being a radiologist, asked to see the images when they were ready. When he reappeared, after having reviewed them, it was one of the only times I’ve ever seen him cry. “It’s one of the worst scans on a neonate I have ever seen,” he declared through tears that even his best efforts couldn’t contain as he hid behind medical jargon in an attempt to distance himself by referring to his grandson as a “neonate.”

And the floodgates of my own tears finally came as I sat there in the waiting room of Children’s Hospital, sobbing. “We just need a miracle,” I said over and over. I finally responded to Sarah’s frantic texts. “I’ll explain when we get back,” I texted her, knowing that would make her even more frantic but that this was not news I could deliver via text message or even by phone. Then I sat there for what felt like several more hours, crying. My dad, in a rare gesture of tenderness, patting my back as I briefly exited my new role as a recently-traumatized father and re-assumed the role of son in dire need of comforting.

It’s a funny thing trauma. It took me a long time to realize how traumatic all this was. And to give myself permission to embrace it. To say it’s okay to hurt still. To be kinder to myself in general but about this specifically. Yet I still struggle with it. Today, 10 years later, was I think the first time I even brought up the trauma this day can sometimes bring to Sarah. “Is this day as PTSD-inducing for you as it is for me,” I asked her just this morning. “Sometimes, yes,” she replied. It was a simple, quick exchange, but an important step. To put it out there. Which is why I share it now.

This day scares the fuck out of me. Every goddamn year. Every goddamn time. Even when LSU won a natty on this day two years ago. My anxiety about Kohl, which perpetually lurks beneath the surface, comes barreling forth on this day. Worrying about his seizures. Worrying about how the latest poison he is prescribed to control them is going to have even worse long term impacts than the seizures themselves. Worrying about why he doesn’t seem to make any traditional developmental progress no matter how hard and what we try. Worrying about what will happen when he gets older, gets facial hair and acne and stops being a cute kid and becomes a severely disabled adult, completely dependent on us for his care for the rest of his and our lives. And the worst of all, worrying about losing him.

My mind delved into plenty of that darkness today, as it always does. But then Kohl watched “Empire Strikes Back” while wearing his Star Wars socks, and seemed to have plenty to say about it. Then Kohl jammed out to “Head and the Heart” today and seemed to be singing along with it. Then when I asked Kohl if he wanted to keep jamming to his tunes or come with me to pick up his baby sister Amelia, he surprised me by answering – pretty definitively – that he wanted to come with me to get Amelia. Then we all went on a sunset walk in our beautiful neighborhood in our beautiful New Orleans. Kohl watched Amelia and her friend Zoe do cartwheels while trying to avoid piles of dog shit. Then we all had dinner together as a family. At the table. No devices. Kohl even ate what we all ate in blended form.

All we have are these little moments. All we have is this moment. We must cherish it. Savor it. This day, ten years ago, was not a good day. In fact, it was fucking horrible. Probably one of the worst of my life. But today – today was a good one.

Andy Chrestman lives and works in New Orleans, Louisiana with his wife, Sarah, and two children, Kohl and Amelia. He served on Hope for HIE’s Board of Directors early on in the organization’s journey, piloting the Hops for Hope fundraising platform.

You can find more of his quick wit, reflections in parenting, and debauchery over at Kohl and the Gang.



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