Tuesday, April 19, 2011

Not a Surprise

Another child lost her battle with CHD last week. This child was seven and had the same type of CHDs as the Dancing Queen. She was more sick than the Dancing Queen because she was never able to have her "full fix", but she is a reminder. A reminder of how fragile life is and that this thread we dance on may break at any time.

I've thought about this precious girl so much this past week, but mostly I've thought about her mother. Her mother wrote how she held her daughter in her arms as the child peacefully died. The little girl had been sick continuously. She had had a lot of the same infections DQ has faced this season and her body just couldn't fight them any more. So, she passed away in her mother's arms.

It wasn't expected, but it wasn't a surprise.

The two of them stick with me and probably will for a long time. So much of my own fears revolve around what happened to them because that could be me. And there is nothing that I can do about it.  It very much reminds me of a heart mom friend's statement to me about her own daughter: "I know my daughter can possibly survive her multiple diagnoses--and even thrive--but I also know that, were she not to make it, none of her doctors would wring their hands and wonder 'what went wrong.' What went wrong was that she was born with a horrific combination of defects, and, as someone who would literally jump in front of an oncoming truck to save her, there's nothing I can do about it."  That's just it with the Dancing Queen. There is nothing to do about it.

I am so lost without some way to help her. My entire being revolves around helping. I'm a lawyer. My job is to help people resolve their differences. I fight their fights for them. Yet, with my own daughter, I have no way to help.

That is why I am bouncing along, lost without direction. I feel like I no longer have purpose since I can't help. I know this is wrong of me and I have to redefine my purpose, refocus it on enjoying every moment I have with my family. I just don't know how to step back and not do anything to help, but I'm working on it.

1 comment:

  1. M.O.L.: I wish I knew the right thing to say to you. I don't. I am here to listen whenever you want to vent. You do have to enjoy every good minute with the D.Q. and draw strength from wherever possible in the bad minutes.

    Best,
    Bonie

    ReplyDelete

Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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