Sunday, July 6, 2014

Feeling Bad

I am so ready to move beyond this holiday, this "independence" day.  I have felt nothing but trapped this weekend; trapped in a horror movie, playing a key role and watching it all at the same time.

We started our weekend at an unplanned visit to the cardiologist.  The Dancing Queen has not felt well for months, so it was time to be seen.  The doctor found no change in the heart function, but no explanation for increased symptoms.  While the cardiologist basically told us everything she has said before, this appointment was very different.

At this appointment, the cardiologist finally realized that the Dancing Queen is not a baby any more.  I could see it in the doctor's eyes and in her demeanor.  She actually saw what we see everyday--a six year old who is surpassed in size by three year olds.  A six year old, who can read books like nobody's business, who has her own thoughts, fears, opinions, but who eats no more than a toddler.  The dichotomy of DQ's face with her missing front teeth and nubs of new ones beginning to show, with her body so small, is jarring in a way.  I've had strangers comment that they can't believe she would be losing teeth already.  Most people can't see the wise, experienced six year old beyond the little body.  Her doctor couldn't either.  Until last week.

I've wanted nothing more than the doctor to see what we see--to know that DQ is big and wants to be big, but her heart and lungs won't let her.  I've fought with the doc on this.  She wouldn't approve a wheelchair for DQ because she said DQ could use a stroller, but DQ didn't want to be a baby anymore and the doc couldn't see that!  Yet, on Thursday, when the doc finally saw that DQ is so incredibly small compared to where she should be, she saw that DQ has grown in height, but stayed the same weight, and just looks gaunt, it made everything all the more real for me, especially after seeing the concern I have mirrored in the doctor's eyes.

We left the appointment with new medications for the Dancing Queen.  They are supposed to help DQ's heart function and lessen her symptoms, so maybe she could feel better.  Unfortunately, the meds haven't stood up to fireworks and fun.  DQ is feeling worse than ever (when not suffering from a bug).  And it has her afraid, so very afraid of being alone when she dies.

I'm not sure how to calm her any more.  We remind her that love never dies.  We remind her that we are with her always.  We hold her when she cries.  But at the end of the day, my baby is afraid to go to sleep because she doesn't want to die alone.  We even gave her an extra dose of Valium last night.  That didn't help.  Tonight, she is sleeping with TRex.  But what about tomorrow?  How can I calm her fears when I can't calm my own? 


  1. To know that your precious girl is frightened of dying alone breaks my heart--for her and you. I've sat here for five minutes trying to think of something comforting to say but it just won't come. I will say that every time I go on FB, I hope to see her smiling face.


    1. Thank you, Bonnie. No matter what you say, your words and thoughts are greatly appreciated.

  2. Oh the beautiful and wise DQ is so breathetaking. All you can do is what you are doing, and even if she is by herself, your love for her is indestructible and infinite. Love to you all...


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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