Friday, November 13, 2015

Bedtime Routine

Just like every family with children, we have our bedtime rituals.  We head upstairs around 7:00p.m. and the kids get their jammies on.  DQ does a running leap onto my bed, where MS has laid a pillow at the foot.

DQ lays there while MS brushes her teeth (doctors orders to get her to behave better at the dentist and get better clean).

When MS finishes, DQ jumps down from the bed, runs to the bathroom with her toothbrush spinning, climbs on her stool, and finishes the job herself.  She chooses the exact dixie cup out of the stack (pink of course).  And rinses.

Then it is off to her bedroom to choose a story.  DQ still loves the shorter books that give one entire story in a sitting, with lots of fun pictures.
Pinkalicious is still one of her all-time favorites.  Mickey too.  Nowadays though, DQ reads us the books.  So, after DQ picks out the perfect book, she scurries back to our bedroom, does another running leap into the bed, snuggles down between MS and I and begins to read.
Perhaps you are wondering where TRex is in all of this. He is so pokey! He will be in the bathroom brushing his teeth by this point and we'd be lucky if he has the tshirt he plans to wear picked out (he always wears one of MS's tshirts to bed).  TRex usually joins us in the bed for the story near the very end.

DQ reads the stories and she does so well. She is a very good reader.  I could listen to her for hours.  My favorite for her to read are the Gerald and Piggy books because she does the most wonderful voices.  DQ considers herself Piggy.
When the story is done, she jumps into her daddy's arms and lays her head on his shoulder as he carries her to her room.  I love laying in the bed, watching them walk away. It is so sweet.
 Last night, I laid in my bed, watching her be carried away and she asked "Are you coming, Mommy?"

Of course, baby. I'll be there in a minute.

And then I sobbed because I know these moments are fleeting. There is going to be a time (potentially very soon) that she won't be walked down that hall at the end of the night in her daddy's arms. She won't be reading me stories. She won't be doing running leaps into the bed.

My heart literally ached. My body shook. HOW CAN THIS BE HAPPENING?

Too many nights these days, she's already too tired to read. Or we have to carry her to the bed.

And I know much of my pain is directly related to a particularly bad night DQ had the night before. I know I was extra tired from lack of sleep and additional worries. But that does not change the fact that despite our recent respite; the moments of calm we've lived in these last several months, DQ remains very sick. She is dying. And in my weak moments, I feel it acutely.


  1. I am so sad to think that this precious child will not always be with you. What a joy she is now. I love hearing about her doings and seeing her sweet face.



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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