Her Perfect Broken Heart

10407258_325876117602894_4750995796954776433_nI don’t know who to credit, but this image accurately describes my feelings. I have never felt like my heart baby is broken. I think S is amazing. I am a wimp compared to her. She is fierce and full of sheer joy.
I would do anything for her….but mostly there’s not much I can do.
Last night I went to check on her. Her tube feeding had leaked all over. They had to order in a replacement gtube (wrong size) and it’s taking a few days to arrive.
So she’s laying in this puddle of formula. Her shirt and sheets and pillow are soaking wet and she smells of vanilla. It never occurred to her that she should go get mom for help. Her skin is raw, but no one is poking her with needles. Her tolerance for pain and discomfort is too high. If it’s not stabbing her or holding her down, she ignores it.
She is fine, but Mommy is sad.  It confuses S when her twin sister cries after a flu shot. Once the shot is over, S’s tears are gone. She doesn’t know what it feels like to walk into a doctor’s office without fear. One time she tried to save me from a doctor taking a vial of my blood for a test.
That tiny heart of hers (that barely works) is stuffed full of compassion and empathy. And she loves Pinky Pie.
I wish I could take it all away. Give me the surgeries, the meds, the IVs, the sensory issues, the fears, the blood draws. I will take them all 100 times over so she can simply be a little girl.
So as the internet floods with too many stories of little boys and little girls dealing with congenital heart defects this February, please open your hearts and open your wallets. We’re not waiting for a grand cure. There is so much more that can be done now. Quality of life, medications, after-surgery care, in-school needs, eating issues, prevention, 3D printing. If you can’t decide where to donate, ask. Ask me or ask other CHD-moms you know. We are too many.
Please help.
As I’m slipping her Pinky Pie lunch box into her backpack, I notice some schoolwork. The paper asks what S wants to be when she grows up. Her words wobble and run nearly off the page: “a mommy”. Hope flickers. I cry.

-Nanette
of HeartBabyHomeCongenital Heart Defect IMAGES
and definitions that parents may repost on blogs and carepages.



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