Wednesday, May 14, 2014


I realized that I have become very selfish with my good stuff.  I only write when I am feeling bad or angry or desperately sad.  But that is not the majority of my life.  Most of it is good. This blog doesn't see any of that though.

Honestly, I don't really care that I'm not sharing the good with the rest of the world.  I've never written this blog for others.  It has always been about getting my feelings out. Hitting publish gives me catharsis; the necessary release of whatever I need to let go of.

The problem with only writing about the bad feelings or my sadness is that I'm losing the good.  This blog, facebook, and the Dancing Queen's carepage are the equivalent of a digital baby book for me.  And when I don't write out the good things, I forget them.  And in being selfish with what I write now, I'm leaving only a sad and pathetic digital reminder for my future self.

I want to remember the Dancing Queen's magic shows.  She puts on TRex's magician's hat that she has filled with a million random objects, pulls out a magic bouncy ball and then we watch it disappear as she drops it to the ground or stuffs it inside another hat.  Then she bows.

I want to remember how excited TRex has been to really be able to read chapter books on his own.  He has spent the last two and half months reading about one book a day.  He is constantly regaling us with his latest story.  His favorite right now are Jack & Annie "Magic Tree House" books and "Diary of a Wimpy Kid".  He reads for at least an hour every night at bedtime, unless he is right at the end and needs to read a little bit more.  He is always hidden beneath his blankets, in a private cocoon with his book light, his puppy dogs, and his latest adventure.  He barely has time to kiss me good night, but I don't mind because he is learning to enjoy books.

I want to remember TRex swinging the Dancing Queen around as they played together.  An afternoon spent waiting for a party to start and the kids just had themselves and their imaginations.  They were each a king and queen, then we played "I spy".  There was nothing extraordinary, but it is the simple things that mean the most.  That day was full of love.

I want to remember the Dancing Queen doing the "Hot Dog Dance" at the end of her favorite show.

I want to remember the feeling of TRex finally releasing his fear and allowing himself to ride his bike without training wheels!  It was not just another milestone for him, it was so much more.  He had learned that you might get hurt when you fall, but you'll never have the fun of the air on your face either.  He learned that he was strong enough to get back up again. And he learned he could do it, if he just tried a little bit more.

I want to remember DQ singing "Let it Go" from "Frozen" over and over and over and over and over and over and over again.  And I want to remember how she does the same exact moves as Elsa while she sings it.  And how that song and that movie have helped DQ not let fear control her.  I don't want to forget the pride I feel when I hear my baby sing with such conviction because she is letting go.

There are so many more moments that I want to remember.  These are just a handful from the last couple of weeks.  I can't be selfish with the happy.  I will only rob myself of these beautiful memories when all I will want is to remember the smiles.  I don't want to be left with only the sad and angry.


  1. Your posts always make me smile and cry. Stop it! :)

    1. At least I'm not smiling and crying on my own!!


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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