Tuesday, May 10, 2016


The weight of the world lays heavy on my chest and in my heart. I literally feel it pressing down, each day harder and harder. My shoulders ache, my head is exploding, and my eyes always feel like I just sobbed for hours (even when I haven't). Yes, it could be allergies, but it's not.

The Dancing Queen is declining. There is no getting around it any longer. She is nearing the end.

I can't even believe I wrote "the end".

I don't know how long we will be at this place. I don't know how long "the end" will last, but we've definitely entered a new horrible phase.

The decline is palpable. It hurts to watch. To feel. To think. To hold.

I want nothing more than to protect her and pretend it all away, but we can't any more. She knows. She weeps a lot. TRex knows. He asks over and over why doctors don't do more. He criticizes the glacial speed of research, discovery, and the FDA process. He cries.

We try to make each day memorable. We try to give as much love as possible, but each moment feels so fleeting. There is not enough time. I have so much more love to give, so many more hugs waiting.

I'm not ready, but I have no choice. Each day, DQ eats less, sleeps more, and is always so very exhausted and in so much pain unless we give her strong meds (which we do routinely now). We can't even pretend that she can do normal 8-year-old things any longer. When we do acquiesce to her demands for normalcy even for a short time, her body is left weaker. It takes longer to recover.

I knew this was coming--the inevitable turn in path we started down years ago. I knew this would hurt in way I could never imagine. But this hurt is so much worse than anything I have ever encountered; magnitudes of order worse. Yet, I'm only at the beginning.

So, yes, when you see my girl, you'll think she is tiny. You probably won't be able to see the ribs that show through her delicate skin. You'll assume the deep bags under her eyes are from lack of sleep. If she doesn't eat around you, you'll say its because of all of the fun she is having and kids never eat when they are with their friends. Or you'll see her gobble half a scoop of ice cream and assume that is dessert, when it really was my desperate attempt at getting her some fat. You'll notice the bruise and think she bumped herself a couple of days ago, not knowing she heals very slowly now and bruises last weeks. You'll pretend everything is okay because that is how we try to be. But it's not okay. It won't be okay ever again (if it ever was).

I don't expect anyone to have answers and I don't expect anyone to know what to say if they do notice my sweet vivacious girl is slowing down. It's okay. There is nothing to say.


  1. I will only say that my heart is heavy for this precious child and those who love her so dearly.



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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