Tuesday, November 13, 2012

Not Happy

There are deep, dark pillows encircling her eyes.  She finds it hard to wake each morning.  She is tiring more easily.  Yet, she has finally "kicked" the cold that has held on for months now.

The Dancing Queen looks so sick to me.  And yet, I'm supposed to be happy with how she is doing now.

I'm not happy though.  I want her to be fixed! I want her to not worry about fatiguing from swinging 10 minutes by herself on the big girl swing. I want her to look like a little girl instead of a tired old woman in a teeny, tiny body.

This sucks! It just sucks to know my daughter is steadily declining, so slowly that nobody else notices.  They make me feel as if I am wrong to notice the little things.  She is not improving.

She saw her pulmonologist yesterday.  He was happy to see her smile; to see her play; to know the joy that is my beautiful daughter.  But did he do anything to help her stop desatting as she sleeps? Did he give us a plan to make her healthy?

Could he?!?


Yes, we've changed a med and it may help her breathe easier, but nothing was changed.  Not really.  Unless she gets worse, nothing will change.

And I'm not happy about that.


  1. I love to see photos of the Dancing Queen. She has a beautiful smile--a happy smile. She's a fashionista. She's clever. I love to see her play. My heart truly aches for her and you. I do so hope that all of you can continue to enjoy your girl. I hope that she can continue to enjoy life. I hope that there are researchers who are very near to finding a way to help the D.Q. and others lead a long and fulfilling life.


  2. Oh my dear friend how my heart just aches for you and all that you go through. The Dancing Queeen is such a beautiful child. Her smile in all the pictures that you share of her is so full of life. Her little personality just shines through that smile. Praying so hard that changes will come to better help her.


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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