Friday, April 8, 2011


Usually, I feel fear or am sad if I think about this life my poor baby suffers, but right now I'm just angry. I am trying to fight the anger raging inside of me, but it is so hard.

I am sitting in the hospital cafeteria right now. My dad stopped by to allow this moment.  The Dancing Queen was admitted last night and won't likely be released until tomorrow maybe. I am so angry that she has to suffer so much!!!!!! Life should not be this hard at 3. All she wants to do is go to the park and slide down the red slide. And she is so used to the hospital that she thought the only thing in her way was the rain. Then I reminded her she was trapped in a hospital room. Trapped to an IV. Trapped in this life that rips every single good plan from our fingertips. Trapped.

So I am angry now. My girl is sad. The only good thing in this is my total despair from earlier this week has been replaced with adrenaline to keep my baby safe and anger.


  1. I'm so sorry that the Dancing Queen has to go through these moments. I know it has to be so very hard for you to see her and TRex disappointed. I still feel sad when my grown children have to cope with disappointment. It does seem to me (from a distant observation) that when little Miss D.Q. is feeling well, she seizes life and enjoys herself. I hope she's back to doing that soon.


  2. This sucks. I know saying that does nothing to help, but it's the truth.
    I hope she's home and playing outside again soon.

  3. Wish there were words to make you feel better. Sending good thoughts that DQ is home as soon as possible.

  4. :( Hope she's able to go down the red slide soon.


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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