I can remember April 6, 2020 like it was yesterday. It was a cold, rainy morning in LA and the pit in my stomach seemed to grow larger and larger with every passing minute. I hadn’t slept much the night before, I think the anxiety over what was about to happen the following morning prevented my brain from shutting off so I could sleep. I remember getting up and getting dressed, trying to make sure I wore comfortable clothes because I knew I was in for a very long day….a very long several days actually. We left Brandon’s Aunt’s house Orange County and began our drive up the 405 freeway to UCLA and I remember feeling sick to my stomach for most of the drive and I remember thinking how strange it was that the freeways were so empty, especially since we were driving in the middle of what should have been rush hour.
The campus of UCLA is beautiful but 365 days ago today, the clouds hung low, a constant drizzle/rain was falling, it was dreary and gloomy…to this day I half joke that the weather outside matched the cloudy feeling in my brain that day. After Everett’s last seizure relapse in March 2020 and trying yet another medication in a last ditch effort to avoid surgery, we had had just 4 short days after he was approved by the surgical conference to process the fact that our sweet baby was going to have a radical brain surgery…a surgery that was his best shot at freeing him from the grips of a catastrophic form of epilepsy. And that we would have to not only pass off our little boy to a team of doctors and nurses to remove half of his brain, but that I would have to do this unimaginable thing all alone because of hospital restrictions (thanks “Rona” 🙄).
That day felt like it dragged on forever…I remember counting the minutes until I was supposed to get an update from the OR, pacing up and down mostly empty corridors deep in my own thoughts, I remember praying and begging God to protect my baby and to guide the surgeons hands. I remember, despite Brandon somehow managing to be able to be in the hospital for part of the day, feeling so incredibly alone. And I remember exactly how I felt when I looked up late that night and saw Everett’s surgeon walking towards me and saying words I had been praying to hear all day. “We’re all done, and from what I can tell, the surgery was successful.” (Trust me when I say, had “social distancing” not just become our new normal, I could have hugged that man right then and there.) That moment right there began our LONG road to recovery.
This past year has both flown by and dragged on, all at the same time. We spent a grand total of 10 weeks in the hospital after Everett’s surgery, 10 VERY LONG WEEKS. Those days were filled with A LOT of big emotions…from celebrating the small things that Everett was relearning how to do again after losing so much after his surgery, to exhaustion (because hospital couch beds are horribly uncomfortable), to missing home like you wouldn’t believe. We would eventually come back home and dive head first into all of Everett’s therapies and we would find a team of people here at home that work tirelessly to help our boy thrive. WE are forever grateful for Bob, Lisa and Aubrie who love our boy, celebrate the small victories right alongside us and push him to accomplish everything he is capable of, we would be lost without these important members of Everett’s team.
So today we celebrate the first of many “Hemiversaries” for our brave warrior boy. Despite being a very drastic and life altering decision that we had to make for our son, that very decision has given him 365 days of (from what we can tell) complete seizure freedom. This journey has also brought us a tribe of people, a hemi-family if you will. People we would have never met otherwise but people we are now forever connected to, thanks to our shared experiences with our brave beyond measure kids. And while Everett still has a long way to go, we are proud of him and how hard he has worked this past year. Mama and Daddy love you our sweet boy, keep shooting for the stars. 💜