Friday, June 13, 2014

Somebody Else

"Mommy, I don't want to be DQ forever.  I want to be somebody else." 

Why would you want to be somebody else, sweety?

"I have a lot of pain."

Everybody has pain, DQ.  If you were someone else, you'd still have pains sometimes.

"But, mommy, most people don't have pain like I have pain.  I always hurt."

I looked across the kitchen at the hospice nurse, there for her bi-weekly checkup. We both gave knowing looks.  DQ was right.  Most people don't have pain like her.

I took a deep breath and  gathered myself.

But if you weren't DQ, you wouldn't love music in the same way, you wouldn't be able to sing as well.  If you weren't DQ, you would lose all of the wonderful things about you that make you special.  DQ is an amazing, wonderful little girl with so much light and life.  If you weren't DQ, you would lose that.

She just stood there, crumpled and sad.

If you weren't DQ, we wouldn't have the smile that lights up the entire room.  And you probably wouldn't love pink and ice cream as much.  If you weren't DQ, you wouldn't be able to read to me like you do.

I know it seems like it would be nice to be somebody else because you don't want the pain any more.  I don't want you to be in pain either. But I don't want to lose you and all of the wonderful qualities that you bring to life. I love my strong, sweet, funny, amazing Dancing Queen and I wouldn't want her to be anyone else.

Her shoulders weren't quite so stooped any longer, but the sadness still enveloped her.

The pain was too much today.


  1. So sad and so beautiful.


  2. I often imagine what my sweet Cal would tell me if she could, this blog confuses me. With wordless love, there are things I never hear, both good and bad. How remarkable our girls are and what a terrible price they pay to make us extraordinary. I wish this wasn't true. Thank you for posting, I hope it comforts you to know that there are many others who are crying with you and care deeply about you and your family.

    1. Thank you so much for your kind words.

  3. Came to your blog through Maria's, which I came to through FB. Sending you strength, such as one can through the interwebz...


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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