Sunday, August 4, 2013


Over the last month or so, I've noted what I feel is evidence of the Dancing Queen doing better.  I have no idea whether her heart is larger or if her lungs are shredded further, but she seems to be doing better to me.  I have noted that her baseline heart rate seems to have slowed and she seems to have more energy. I don't know if this is because summer camp is easier than school; because weekends are more fun; because flu bugs and cold viruses are dormant so not constantly attacking her body; because she was started on oxygen; or because of something else entirely.

I guess it could all be a fluke, but I think there's something to it. And what's more, I'm starting to feel she is improving.  I know it in my heart.

I'm not delusional enough to think she is being cured in any way, but I'm no longer in dread because I just feel like she will be here a long time.  Longer than I thought a couple of months ago at least.

With that, my worry is that I will become complacent again.  I will try to catch up on work that was pushed down when I was in my heightened state of fear and anxiety.  Or I will pass up opportunities to make extraordinary memories for her in favor of bedtime rituals and sanity the next day.

Don't get me wrong. I know those things are important too, but my balance over the last six months had shifted dramatically.  Maybe that is why she seems to be doing better. Maybe she is happier.  I don't know. But I do know that simply because she looks good doesn't mean she isn't in heart failure.  And while I know that we will likely see a gradual decline over time, it very possible that her heart can just stop without warning.  A fellow heart mom is saying goodbye to her son this week because of just that.  He had been improving, everyone expected good things to come, and then he was gone.

Life is so fragile, yet so enduring.  How do I fight complacency, without being morbid?  How do I give DQ happiness without turning her into a brat? She needs to know that she is loved, but not be spoiled because of it.

How do we make that happen?

1 comment:

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.
Related Posts Plugin for WordPress, Blogger...