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I'm lucky

Yesterday and today the kids have been crying a lot and acting up. Usually they're sweet and happy. At least one of them is. It's very rare to have both be very sad at the same time. Usually it's because I'm upset. I haven't been upset in front of them. But I guess they know. I can be sad but if I'm truly utterly upset both kids go wild. So I'm afraid I have to stop after this post.

But thanks so much for your responses. They helped more than I can express. I feel I have moved forward. I'm lighter though not entirely unburdened. This is life after all not a tv movie.

On that very first day I gazed into Little T's eyes and I knew he was a fighter. I knew he was incredibly tough and he really wanted to live. I knew he would do everything in his power to live. I was never scared he wouldn't fight. I was scared the tumor would be too much for him. And it was so enormous.

I think this is a large reason why I have such a huge time forgiving myself. I screwed up. I let him down by not believing in him and in myself. But not trusting my instincts. I have trusted my instincts every single day after that.

I have watched him go into septic shock (although at the time I didn't know what it was). That's where your entire body goes blue and you can't breathe. I remember thinking he's not breathing. In movies the body turns a bright blue. It wasn't that. It was more a short faint dusky blue like when you get cold. I was thinking about whether to call 911. Meanwhile I was shaking him. That's what they teach you in lifeguard training. Not hard like in those poor shaken babies but enough to get things moving again. This was enough to get him breathing again. His skin pinked up again and so I never did call 911.

Even so I knew it was life-threatening. By the time he got to the doctor his temperature was only 99 and he was playing. My mind couldn't consciously think his life was in danger. I couldn't function thinking that out loud. I told myself I was just being cautious. But the way I looked must have said something. He got a blood draw. We were sent home pending the blood culture which took 12 hours. I didn't mind being sent home. I knew we'd be back but I also felt I knew I could save him again. And sure enough he had a bacterial infection in his bloodstream aka sepsis.

He turned blue at the hospital. A code blue was called. Tons of doctors and nurses rushed in. The first time I wasn't there. The second time I was and I learned it was called septic shock.

This story is important to me to tell myself. I tell myself I saved his life. And I didn't thatf first day. The fact of the matter is that he could have died at home in my arms. Sure I knew artificial respiration and CPR but septic shock is so dangerous that people die of septic shock in the hospital even with the best medical technology.

He kept getting sicker. He wasn't responding to the usual antibiotics. But fortunately a young intern in her first week suggested a new antibiotic. She saved his life. Looking at her deer in headlights look that first day she met him I never thought she would do anything useful.

After he started to get better doctors used terms like "out of the woods." It meant that he had nearly died. It was luck that saved him. Chance assigned him this intern eager to try a new thing her first week eager to prove herself.

I've always considered myself a lucky person. I still do. I think for a time I stopped believing I had any luck. It filled me with despair.

Today at least right now I believe I'm lucky again. Maybe just maybe the right things happened. I think about what a c-section would have cost me. I have a blood condition where some blood cells are smaller than others. I'm slightly anemic. A year later after Little T's birth I still felt overly tired and my blood results were a bit below normal.

Supplying and growing Little T's tumor (consisting entirely of blood) made me incredibly weak and tired during his pregnancy. I literally had to lie down a lot or I'd get dizzy and fall down. I still consider a miracle I managed to carry him to term.

Maybe a major operation would have been too much for me. Of course I wouldn't have considered the risk to me if offered the choice. I would have just done it. Probably if they had found out earlier they would have wanted to have him come out early due to the risk to me.

I have never written down these other maybes. I just took it as a given that I screwed up. That I should have said something while I was pregnant. But something held me back. I always thought it was cowardice and fear. But I didn't feel this surge of courage after he was born if that makes any sense. I was always just me.

The doctors who called me about that operation the first day later admitted that they screwed up. They never should have called me in the first place. They should have waited until they talked to the head doctor. They screwed up the protocol. The head doctor has never had any doubt that he shouldn't have the operation. He just feels bad I got the phone call. But as terrible as it was it galvanised me. I had a choice. I had the power over my son's medical care. I felt so weak and helpless that day about the doctors until after I got the call the operation was off.

Luck always played a part though. I have power over my son's medical care not his health. I am learning to live with that.


( 3 notes — Leave a note )
Jan. 12th, 2007 12:01 am (UTC)
Luck always played a part though. I have power over my son's medical care not his health. I am learning to live with that.

...grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Jan. 12th, 2007 03:42 am (UTC)
I'm so glad you're starting to shift your perspective. This was beautiful to read.
Jan. 23rd, 2007 01:28 am (UTC)
You are one of the most amazing people I know. You're someone I truly admire. I think that you are too hard on yourself, at times, but I can understand those feelings- I think they're normal for any parent. YOu care so fiercely for your kids -- they are so blessed to have you and C as parents.

You're in my thoughts and Little T is in my prayers.

( 3 notes — Leave a note )