The kindest, sweetest, most beautiful boy. The most perfect smile, since the moment he was born. Such an intelligent, resilient kid, with wisdom beyond his years.
I miss him every day. My heart is forever shattered by his death.
He had his first seizure as a toddler. It was terrifying, just like every seizure that followed. We never really knew, though, that a seizure could take our boy away forever.
He was barely 11 years old. He hadn’t had a major seizure in 4 months. He was on a school camping field trip, on a hike, in the middle of nowhere, with no cell reception, in bad weather. A literal “perfect storm” for the most horrible day of our lives.
I’ll never forget. At 2:12 PM, I got a call. It was the camp director. I don’t remember much of what was said. But I remember the tone of her voice.
By the time I got to the hospital, it was dark out. My son was intubated with wires and tubes everywhere. Then they told me he was “clinically brain-dead”. They brought up organ donation. His older sister and two little brothers came to say goodbye. They were 13, 8, and 4.
7 hours later, he saved 6 lives with his organs. We went home. We cried. We fought. We grieved. It has been agonizing, waking up every day and remembering that Atticus is gone.
He died from a 38 minute seizure, which caused his heart and breathing to stop. 20 minutes of CPR and 3 shocks eventually restarted his heart, but his brain had been severely deprived of oxygen, and it was too late. Everyone did everything right, but epilepsy still won.
It’s so hard, remembering the last time I saw him healthy. Before he went on that field trip, I remember him scoring 3 goals at soccer (he was always a sporty kid) and taking his younger brothers to the playground. I remember him playing with the dog, helping me make dinner, and helping with homework. I remember that he was happy and well. Some days I still can’t understand how epilepsy took him from that to nothing so quickly.
Almost two years later, our family is just beginning to heal. At 14, 9, and 6, my other children are traumatized by the hole Atticus’s death left behind. My eldest holds it all in and fights the battle internally. My middle child acts out. My youngest has grown up faster than he should have. I cry when the kids aren’t home. Every holiday tears my heart open all over again.
I would do anything to have just one more moment with Atticus, but sadly it is too late for him. But there are many, many more children and adults like him who still need a cure. A cure would mean no one else would have to get “the call”, or watch their child’s heartbeat flatline.