Robust Frame

One year for Halloween Damonito was The Incredible Hulk. It was the perfect costume but not so much a costume because he is, after all, incredible. And he is a hulk. Not so much in size as in strength. The kid has guns. From across the room he seems a little helpless. Get closer and he holds his hands up to take your hands and the next thing you know he's pulling you down to the floor. You think because he's only four that he can't be that strong. He is.

the ability to spring back

The resiliency of children is amazing. Damonito has managed to find his way back from places that there was no return. Sometimes no worse for wear. He's a fighter. We're lucky. We are amazingly lucky.

Sometimes simple is complicated

Damonito is at a much greater risk for seizure when he's sick or tired. That's where the good days/bad days come in. If he's had trouble sleeping usually a bad day will follow. If he has too many bad days in a row he could land in the hospital because his seizures will be uncontrollable. So sleep is very important. Part of the reason he hadn't been sleeping so well was because he wasn't breathing well while he was sleeping. So, to help with his breathing the doctors removed his tonsils.
A tonsillectomy is outpatient surgery these days. They wanted to keep Damonito over night for observation. When his system is compromised everything is vulnerable. He went into and out of surgery like a champ. Afterall, he'd had brain surgery. This would be a walk in the park.
So we thought.
Three grand mal seizures during the night changed everyone's opinion. His oxygen levels had dropped dangerously low and he had to be moved to PICU (pediatric intensive care unit).
He had become comatose and for three days we weren't sure he was going to come out of it. This was one of the times they called in the chaplan.
Not much comfort after a tonsillectomy.

Big Eyes Big Eyes

Damonito has had four surgeries. He has a g-tube, he has a VNS chip, he had brain surgery last summer, and this summer he had his tonsils taken out. I have photographed him before and after surgery, on good days and bad. I have photographs of him laughing hysterically and I even have photos of him having seizures. But I have spent the past four years trying to capture essence of Damonito's unnaturally long eyelashes.