Alexander Locke Johnson

February 17th 2005 - (either April 29, 2005 or May 11, 2005)

My wife reads every comment. We both agreed contributions to the March of Dimes (also the American Cancer Society) as fitting legacies for my son, who never got a chance to experience the vast majority of his potential life.

I did not live blog my son's death. I don't feel comfortable speaking about it now. I know what it feels like to have your best buddy die in your hands, just like the war movies. I didn't realize he was dying. It's still a painful wound. I cry every day. Sometimes I cry until I feel nauseus or my guts ache.

I replay April 29, 2005 in my mind.

My first thought was that my son had epipepsy, after he punched the air. I'd never seen him move his arms like that. It looked uncontrolled or like a spasm. Of course babies move their arms jerkily, but this was clearly different.

Literally within a couple seconds he'd gone limp and his face was blue. I was sitting next to a phone so I called 911 just as I was trying to figure out what was going wrong. I felt my son, white and limp as a dish rag. I tried to give him a breath. Around that time, I think - during times of crisis events get jumbled and I usually remember fragments (not always in order) - I heard the 911 operator and I picked up the phone. I knew Alexander was serious, very serious.

The 911 operator gave me advice to turn Alexander on his stomach. I wasted precious seconds explaining to her that "upside down" in my world meant I had followed her advice (he was on his back) and turned him to facing down. She asked me if there was any blood. Just at that moment - (talk about bizarre coincinces which can toy with your sanity) - there was a small amout of fluid bubbling from his nose. Some of it was breast milk, some was blood. I tried to give my son another couple breaths. I thought his heart wasn't beating, but I wasn't sure and couldn't understand what was going on. I was going between the operator and my son frantically.

"Epilepsy doesn't kill people outright, does it?" I wondered in my head.

Things get very jumbled as the firemen arrived. First, I ran my son out to the truck, stomach down, hoping to get any fluid out of his chest, and in my panic I guess I thought they'd just grab him and run him to the hospital. I wasn't thinking clearly. They brought him inside and used up valuable minutes trying to establish and airway and a heart beat.

In a nutshell, my son died that day. We watched his heart beat and lungs ventilated for almost two more weeks.

I'm wracked with guilt. Not knowing infant CPR very well, not seeing some 'sign', wishing I'd ignored 911 and just done straight CPR (the operator told me not to, did I mention that?), and more as my creative, perfectionist - judgmental conscience finds new ways to make me miserable.

My pediatrician thinks even a crash team would have had trouble given the cause of the event, a severe seizure of the brain. The question is "Why?" We many never know. Test results - and I think we've had all of them - should begin to show up in a couple weeks.

When I can take it I plan on reading every comment here.

For now, I mainly take out my sadness and frustrations on the back yard. I've done two months gardening in about six days. I look at Alexander's pictures, cry, then go to the back yard. That is a typical day. If I'm on the Internet, it's at night, or when I need to get out of the nice, cool Florida Spring days (90 F, 70%+ humidity).

I bump into things even more than usual, commercials with babies can make me cry, I forget where I put something as I put it there. It's a less-than human existence right now.