Monday, July 29, 2013


My mom gave a bunch of us heart moms necklaces last week.  They consist of a silver circle with the word "hope" written in English on one side and French on the other and a small gold heart hanging from a silver chain.  On Thursday morning, I saw the box sitting on my counter and decided to put the necklace on.

TRex asked me what it was and I explained that Ma had given it to me and to other moms working together to raise funds for new research into congenital heart defects. 

I will never forget his response for as long as I live: "But, Mommy, there is no hope for DQ. Nobody can fix her heart."

He was so incredibly sad, so sure, so lost. 

I tried to explain that you can never lose hope. And just because something is unlikely doesn't mean that it is impossible.  I reminded him that his sister was right there, sitting next to him, loving him.  I deparately tried to not let hope die in him. 

It was only a year ago (10 months to be exact) when he planned to raise the most money ever for heart defect research--sure he'd find a cure for his sister.

What is all of this doing to my sweet, optimistic boy? 

TRex's fears have multiplied over the last couple of months.  He feels surrounded by monsters constantly.  He knows they don't exist, but he still sees them in his room--thousands of monsters surrounding him.

I asked him to yell at the monsters and tell them to go away.  He weakly complied, eager to help mommy: "monsters go away."

I yelled out and asked him again to do the same: "MONSTER'S GO AWAY! MY MOMMY AND DADDY WON'T LET YOU DO ANYTHING BAD TO ME!"

He wouldn't yell.  He wouldn't repeat.

I needed to know why.

"Mommy, I can't tell you." 

Do you know why, TRex?

"I know, but I can't tell you mommy."

TRex, have mommy and daddy ever let anything bad happen to you?


TRex, do you think mommy and daddy will let something bad happen to you?

He snuggled down into my arms, hugging me closer as the silence filled the room.

F'ing CHD is not only slowly taking my daughter, but it has also stolen my sweet, innocent son.  I can't protect him any longer.  He knows  too much.


  1. He is a sweet and compassionate boy. I know there are no words to fix the problem. But, he is part of a loving and caring family and that will always be true, no matter what happens with DQ. I can't imagine anyone doing a better job than you guys to make your kids feel as safe and loved and protected . xo

    1. You rock! Thank you for bringing a smile to my face :)


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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