Friday, December 27, 2013


How was your holiday?  A simple enough question.  Harmless it would seem.

And while my holiday was lovely and the kids were so excited, the question is not harmless and I dread it.

Every mom wants Christmas to be perfect; wants everyone to remember the magic of it all.  But knowing this could be the last Christmas put so much more pressure on me.  I wanted everything to be a memory--wonderful images that will stick for eternity.

Alas, somethings just aren't meant to be . . .

Every morning, the Dancing Queen awakes with sobs.  Every day, no matter how easy we take it, her eyes have deep, dark circles.  Each moment, we are closing in on one year gone.

Last year at this time, we were freaking out about the potential for another surgery.  This year, I would give anything for a life-extending surgery.

How is it possible that I love her more every day?  Haven't I loved her with all of my heart for as long as she's been with me?

And TRex, he grows to be such a good boy, yet there is a sadness about him as well.  I can't stop any of it.  How can I not stop any of it!

The Dancing Queen has begun to fight me with taking her medications.  And the other day, she insisted that one day without them would do no harm.  I tried to explain how very important it is to take her medications as prescribed; how they keep her alive.  Her response will likely haunt me for a very long time: "But, Mommy, I have to die someday."  She looked small as she said it, sitting across from me at the breakfast table.  She wasn't in her booster and she was just so small, yet so wise.  "But, Mommy, I have to die someday."  Baby, we want you to stay around as long as possible.  I almost begged her to take the meds, panic about to take over, when she simply picked them up and downed them.
It's been almost a year since we were given the hope of 3 to 5 years.  What will the next holiday bring?  Will she still be as active?  Will life resemble anything nearly as good?  Will it better?  Will it be worse?  How can I hold on to today just a little bit longer?  With all of these questions swirling about, my holidays have not only left wonderful memories, but I am wounded as well.


  1. I feel the same way. We must just live with no present or future and figure out a way to be grateful even as the world takes more away from us. I fantasize about not having to celebrate Christmas but then I realize Christmas is not for ourselves, it is for others, and this will never change. And you are doing what you must and your daughter has everything that is possible in this world since she is beloved.

  2. I've been sitting here staring at the DQ and trying to come up with a few words of comfort. I can only say that you all are in my thoughts very often. I've enjoyed seeing the joy of your family as you make life as normal as possible over the past year. The DQ's tender care of her "babies" reflect the care and love she is soaking up. I wish for you continued strength to enjoy life together and to the fullest in the coming year.


    1. Thank you so much, Bonnie. Sending you much love for the new year.

  3. Thank you for writing so beautifully -- and honestly. You're a wonderful writer (and an even better mom).


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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