Thursday, February 7, 2013

Is this my life?

I walked into the garage Tuesday morning and TRex and the Dancing Queen were fighting. DQ insisted the Mickey was going to die on Wednesday. His heart was sick and the doctors had nothing more they could do, so Mickey was going to die.  DQ was devastated.  TRex was fighting with her, telling her "NO! Mickey is not going to die. The doctors keep researching and they are going to find a cure. You're wrong DQ. You can't be sad. Mickey will not die tomorrow!"

This morning, I had the following conversation with DQ:
Mommy, I'm sad.  People have been hurting my feelings and I feel sad.

"What have people done, Dancing Queen?"

They hurt my feelings, Mommy.

"How did they hurt your feelings?"

They said I'm going to die. And not die as adult like everybody else. They said I'm going to die as a kid.

"Who said that DQ?"

I don't know, Mommy, but it hurt my feelings.  I'm very sad. I don't want to die.

How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?

Monday night, that is exactly what we were told.  DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.

TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?

I hate congenital heart defects!


  1. No mother should ever have to explain this to her children. It breaks my heart!!


  2. How scary and upsetting for all you. I hope knowing there are so many people out there sending love and support is at least helpful so you don't feel alone. xo

  3. How very upsetting to hear the conversation between the two of them. Breaks my heart. Praying for all of you and especially for DQ. {{{HUG}}}

  4. Sending you hugs and saying a prayer. I can't imagine how hard it is.

    May you find some comfort in knowing that your story has touched the lives of others and that people who have never met DQ are thinking of her and praying for her miracle.


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.
Related Posts Plugin for WordPress, Blogger...