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.

Tuesday, July 16, 2013

Take Me Back Tuesdays: Summer

When I was a kid, I remember eating a lot of peaches during the summer.  My grandmother would cut the peach in half and twist the fruit off the pit, then hand the pieces to me.  I would beg her to let me grow a peach tree.  And every summer, she always let me dry out at least one pit so that we could get inside and find that precious seed.  I don't remember ever planting the seed, but there was always a peach pit drying on grandma's counter, right next to the tomatoes that fell off the vine too soon and needed to ripen a little more.

That was summer.

As I ate a peach on this sweltering summer day, I couldn't help but think about grandma and the peaches.  I had to have been young when all of that happened.  Grandma and grandpa moved to Virginia before I was in third grade.  And the kitchen I remember was here in Michigan.  I was the same age as my kids are today.

But what type of memories am I leaving for them?  There are no peach pits drying (they won't eat peaches, preferring summer's abundance of raspberries, blue berries, strawberries, and grapes).

I clearly remember the summer afternoon that my grandma taught me to ride a two-wheeled bike.  Neither of my kids can do that yet and TRex is almost 7! How much of that failure is a result of the kids never being home?  If they weren't in summer camp all day, I'm sure they'd know how to ride a bike.  If only I didn't have to work full-time, my kids would have the basic skills needed to live a good life.

I remember mornings with grandma pressing ice cream between two fresh waffles.  Then licking the dripping sweetness off my hand.  There was no rush, no hurry.  My kids' summer morning consist of Eggos (TRex) and bologna dipped in barbeque (DQ).  Yes, DQ tends to lick her hands, but only because she dips them in barbeque sauce. And we do not sit and enjoy, but finish with a mad dash to gulp down meds and slather sunscreen from head to toe before heading out the door.

None of it is the same.  And that makes me sad.

I know the kids know no different and they are loving their summer.  Each day is a new adventure and they have so much fun.  We don't have any other choice really.  But it makes me sad nonetheless.
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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