Monday, November 10, 2014


This October was the longest month of my life. It started in the most horrific of fashions.  I wasn't even sure the Dancing Queen would still be with us at this point. It seems like a miracle to me that she has had a complete turnaround and is back to the DQ we had before the summer. The whiplash of emotions has left me drained beyond comprehension.

I've been here before. I've watched DQ come close to death and fight her way back, but this was so different on so many levels.  The emotional turmoil we faced this past month was nothing short of torture. And even the Mad Scientist wouldn't argue that I was being overly dramatic in this case.

I would be lying if I said I don't have a little PTSD from watching DQ in such a downward spiral.

Last night, she screamed out over the monitor and I about had a meltdown because I couldn't believe it was beginning again. Because my emotions are still so exposed, so raw, when I heard that single scream, I couldn't sleep. I just laid there waiting for the other shoe to drop. Instead, it turned out that we forgot to put an underjam on last night and DQ's bed got wet. Of course, she sleeps so hard that she didn't wake and realize the issue until morning.

You'd think my disposition would cheer with the holidays coming. But not even that can take this pain and fear away.

As of two weeks ago, neither kid believes in Santa or magic.  I've tried hard to let them hold onto some sort of wonderment, but none of it is the same. The excitement is not quite palpable. Everything is less fun and more routine.  The holiday vibe has been lost.  And that is so disappointing.  How can a six-year-old not believe in magic?!? And I was the one who had to take it away from her so that she would understand why Santa would not magic her healthy. The whole situation is devastating.

Couple the loss of magic with the month we've just had, I can't help but wonder if this will be our last Christmas.

Is it any wonder why I'm constantly muttering "F*CK" under my breath?


  1. I hope DQ has many, many more Christmases and keeps rallying. And I hope you know you're entitled to scream F*CK from the rooftops anytime you want. No need to mutter. Hang in there.

    1. I'm not sure my partners and staff would agree with you on screaming curse words at the office ;-)

    2. Why is it always about them?? ;-)

  2. I've been wondering what was going on since you haven't been on FB much. I'm hoping that some magic can be conjured up. Every Christmas you have together should be a wonder. I know how even a small worry about a child can make nighttime very difficult. I can't even begin to imagine how it is for you. Shout that four-letter word from the rooftops, not under your breath!


    1. We're trying to conjure the magic. I'm hoping to find some soon :)

  3. FWIW, your blog makes me appreciate the normalcy of my life, and to bit my tongue when I think to complain about ridiculously little difficulties.


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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