Tuesday, April 22, 2014


The Dancing Queen has been doing relatively well.  If she is declining, it is not as obvious as a year ago or maybe it is as obvious, but I am no longer shocked.  We still have days that are blatant reminders of what is to come.  But most of the time, we live our normal.

Because we have routinized living with heart failure, it feels like it is wrong for me to feel sad.  But I am sad; so very sad.

I have bouts that take over my entire being and leave me a puddle on the floor.  The triggers may be obvious or out of the blue.

For instance, an obvious trigger was X commenting how amazing it is that people could die of pneumonia in this day in age.  She has no clue how common pneumonia is or how deadly, nor does she realize how very possible it is that an everyday bug could lead to pneumonia and kill my sweet girl.  Hearing her tactless comment was hard, but also not completely unexpected, so I was ready.

I wasn't ready when the Mad Scientist sent a simple text letting me know our taxes would be timely: "watched her post mark the letters as I stood there. we're good."  I'm not exaggerating when I say reading that text literally took my breath away.  I would have fallen down had I been standing.  Instead, I crumpled into a heap in my chair, sobbing uncontrollably.  It took all of the energy I could muster to stifle the earth-shattering groan that tried to escape.

Thinking about it a week later still makes my heart hurt and the tears are flowing again.

Why does a seemingly irrelevant text hold such power?

Simply because paying taxes reminded me how much I have to work and how little time I have with my children and how precious that time really is.

We have no idea how long the Dancing Queen will remain in this current routine.  No matter how comfortable it all feels, that clock on the time bomb continues its relentless death march.  And it makes me sad, so very sad.

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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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