Monday, November 27, 2017


The Dancing Queen gave up earlier this year. She wasn't trying. She wasn't living. She wasn't doing anything, except lying to us to play video games and watch tv. She had decided it was easier to stop living than face losing everything. If she gave up on her own, there would be less to feel bad about when she died.

No, she didn't tell me all of this, but I knew it.

She had given up. She had admitted to lying to us to leave school. She didn't want to do the work of 4th grade when she didn't feel well. So, instead of trying, she let herself concentrate on how bad she always feels and left school every day.

I had to pull up my big girl panties and make her stop. I had to tell my dying daughter that she couldn't give up. She had to stop concentrating on how crappy she feels and concentrate on living--even if that meant learning multiplication tables and long division! I had to yell at her and ground her and force her to face reality that she wasn't being kind to others or herself. I had to threaten to take away Christmas presents and keep her from tv for a week. She still hasn't earned back video games.

How can I take these things away when they help her smile? We don't know how long she has. She could go into a funky heart rhythm and not get out in time and she will be gone and her last days will have been spent grounded and fighting with me.

Then again, her rhythms may stay okay or at least correct themselves quickly and she could live another ten years. If so, she needs to live--really live; not this half-life where she has already given up. I can't let her do that.

How do I know the right answer???

What am I supposed to do!!!!

I grounded her. I forced her to face the reality that she was giving up on herself. I made her realize how selfish and mean she was to all of us and made her feel bad. I can't have her being a jerk for the rest of her days. But all the while, I was thinking that she deserves to have fun. She deserves comfort. Fuck multiplication!

But my tough love lesson sank in. She wants to work hard. She wants to try to get back on track. She heard me loud and clear. She doesn't even know if she deserves Christmas presents yet (though, you can be sure, she wants them). She is trying to change for the better.

With all of that comes huge anxiety over how she behaved before. DQ basically missed the first quarter of 4th grade and is terribly freaked out about catching up. She was so worried about how she will get the work done that she was in tears this morning. I asked her not to worry. I told her she is not in a race with anyone else and that it might take her longer to learn, but I don't care as long as she is trying. I just need her to try. I can't have her giving up. How can I teach her to embrace life and not give up? If she gives up, she will die sooner. I know it. Yet, she is so stubborn. I can't get through to her to get her to try--to live--without making her realize her errors before and then the ANXIETY. She has no balance. It's all or nothing. I had to give her valium just to get out the door to go to school this morning.

I just want her to try and stop giving up. Please stop hurting yourself, baby girl.
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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