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To My Daughter With Down Syndrome as You Face Open-Heart Surgery Again

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I wish I didn’t know it’s best to braid your hair in two little braids right before you go back to the OR for open-heart surgery. We won’t get to wash your hair for many days, and this will keep your red locks from getting tangled and matted.

I wish I didn’t know one day soon they will put you to sleep, for the third time, and place five IV lines in your little body. Through one of them, a doctor will give you a medication that stops the beating of your heart — a heart that works hard to do so. A machine will breathe for you and circulate your blood while a surgeon delicately performs another life giving operation. I will cry and pray and wait a few rooms away.


You will come out of surgery and for the third time the sight of you will take my breath away. I will search for and find a little hand among the wires and kiss it with tears of gratitude.

You will be brave and sweet and all the nurses and interns will be smitten with you and come by your room just for a fist bump or a high five. You will be cranky with them because you’ve been poked and prodded too much. You will rest and heal. You’ll blow bubbles and play the guitar with the music therapist — I will tell her that Old McDonald is your favorite song. You will probably get to eat chips for breakfast because you get to eat anything you want the week after heart surgery.

Once again, you will be stronger than I thought you could be so I will be, too. You will astound me.

Follow this journey at Under the Willow Tree.

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Originally published: August 4, 2017
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