Friday, June 28, 2013


Thunder boomed this evening at bedtime and TRex was scared. As he searched for his puppy dogs and sunk deeper into his bed, where I had just kissed him goodnight, DQ ran around his room, oxygen cord trailing behind. She ate all the monsters she could find so that her big brother wouldn't have to be scared.

He protested: "But there are more hidden under the bed and in the drawers!"

She ran to the drawers and put her hands under the bed, then gobbled up more of those scary monsters.

She patted her tummy and declared "I'm so full."

But TRex was still scared and just knew there had to be more monsters near his door.

DQ took a deep breath and gobbled up those remaining monsters as well, wiped her brow, and stated in a most matter-of-fact manner "now, I'm really, really full."

As the Mad Scientist and I shook our heads and laughed, TRex was saved.


  1. I say write it down and get it published.


  2. I love your blog so much. Speaking of being pissed off, I was at the pool today with my daughter Cal, who is so weak now she doesn't do anything in the water except sleep, and I am so happy she sleeps since kids with white matter disease don't sleep well. And there is this elegant woman with her son, the boy looks to be 3, the same age as my kid who is obviously special needs and not-so-obviously dying. This mother is ignoring this little boy take his swimming lesson because she is reading a book called "How to raise a successful child." I wanted to murder this woman, I wanted to take her son away and say you no longer get to be a mom, find a German Shepherd to train and enter in shows. But, I didn't....

    1. Thank you for reading and sharing your story.

      I'm not sure a mom who spends her time ignoring her child while reading about being a mom would work well with a dog . . . perhaps a show fish.


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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