Stuffsoup – a little blog with a lot of "stuff"


Cold toes, warm heart

Posted in Down syndrome,parenting by stuffsoup on February 10, 2011

My daughter has taken to climbing into bed with me between 5:00 – 5:30 in the morning. There are just a couple of things that make this less than optimal for me. First, I am not a morning person and second, my daughter is not always the easiest person to share a bed with so usually there will be no more sleep for me once she is in the “big bed”.

The other morning, she climbed in and cuddled up like she often does. This time, she pulled my hand up underneath her chin like she was pulling up her blanket, so the palm of my hand rested on the soft, warm skin at the collar of her button-down pajama shirt. Suddenly, she felt small again.

She was small as a baby; born prematurely, as babies with Down syndrome are at greater risk to do. I used to “measure” her with my hand back then and nearly everything on her was smaller than my hand.

That morning in bed, her chest felt as small as my flattened hand. It got me thinking about her heart. That little defect she still has and the one she finally outgrew. [Nearly half of babies with Down syndrome are born with heart defects.] I even thought of the newly famous kid in the Super Bowl commercial who played Darth Vader. He has bigger heart issues than most of the kids I know with Down syndrome.

I felt glad that we were not lying in a hospital bed together, which we have done for other issues. I was glad that we had never had to go through open heart surgery as others had. I was grateful for how soft and warm and cuddly she felt and how sweet the moment was.

Then, she kicked me with her cold, little toes as she rolled over in her sleep. 😉

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