Wednesday, November 2, 2011


We celebrated Halloween like most people do--went out trick or treating with the kids at least a gazillion times before Halloween and then topped it all off with a nice jaunt around our neighborhood, collecting more candy. We have so much candy now that it will not be eaten until next Halloween (not that I will allow it be in this house that long).

The kids had an absolute blast though. They loved every minute of it.
DQ dressed as Thomas the Train for the second year in a row. And for the second year in a row, I purchased a different costume that she didn't wear.
Cap'n Hook! I bet you never guessed that was coming.

What's not to love about Halloween? You get to pretend to be something else and people give you candy.
Yes, she was eating a Snickers.

Everyone loved Halloween, even the grannies and my hubby (but he always loves Halloween.)

Halloween was a great night. The Dancing Queen even got a kiss! She was sitting in her grandma's lap, kinda like the picture above with the Mad Scientist. She was handing out candy. And as she leaned over to drop candy in the bag of a boy of age 6 or 7, he leaned over and kissed her cheek! I was so shocked, I didn't say a thing. By the time I came to my senses, the boy had run off down the street.

Unfortunately, the night was not all fantasy and sugar as Halloweens of yore. Pulmonary hypertension has stolen yet another holiday from me. I've been trying to keep it all together with so many unknowns and so little choices, but on Halloween night, it all came out.

I ran back to the house for the stroller because DQ was tiring after only a couple of houses. As I returned, she was being lifted onto the porch of a neighbor and she was coughing, the hacking cough of PH, the cough we haven't heard in so, so long. At that sound, the floodgates opened. My baby will continue to get sicker. She will continue to decline. Her heart function will worsen. Her lungs will be destroyed. We have a very limited window to find her help to slow the destruction. And we are running out of options. We have no choice but to rely upon hope and sheer determination. And with those coughs, I didn't know if it would enough. I didn't know if this would be her last Halloween. And I broke.


  1. Sorry you had a rough night with far too much reality shoved in your face on a night full of make believe.
    Keeping you in my thoughts as always.

  2. Just happy that you guys (especially DQ) got to have some fun! Because that really is the most important part of the whole thing.

  3. I don't have any words...just know that you are constantly in my thoughts. My heart is hurting for you.

  4. Through it all, the Dancing Queen's smile just melts my heart! Love the outfits! Thomas with fuzzy pink ears is over the top!

    So sorry that you are again facing such uncertainty.



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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