Today is the first day of Congenital Heart Defect (CHD) Awareness Week. (Feb 7th-14th). I think you’re all pretty aware of my daughter’s CHD. I’ve told so much of her story. I wanted to share something new.
Everyone marvels at how brave heart babies are. It’s true,….mostly. Mine is now 8 yrs old.
A few days ago, I had to take the kids (except my heart baby, S) to the dentist. We were getting ready to go and S came over with this huge smile on her face and asked, “Where are we going?” (Her new favorite question.) When I told her that the rest of us were going to see the dentist, she clapped her hands and did a little dance. “Can I come, too?”
For just a moment, I thought I’d messed everything up — insisting Dad come home from work early to stay with her. “You can come if you want to. I am going. The kids are going….but Daddy is staying home. If you want to come, you can come; but if you want to stay home with Dad, you can stay home with Dad.”
S’s smile instantly dropped and she ran to her Dad. She tapped her hand on his back and told me in her most serious voice, “I want to stay with Dad.”
She has had 2 open heart surgeries. They cracked open her chest. Countless IVs. Blood draws. ICU stays. Enough intubations to swear off food for life. She has this shield that protects her. She puts food in her mouth and says, “mmmm” even as she pulls a face and looks for a chance to spit it out. She shares with anyone who asks. No joke, my daughter has the empathy of 20 grown women.
She’ll wander in from any corner of the house with her hands over her ears if she hears people fighting. She walks right into the thick of it. Looks at each person and then leans in to give them each a kiss. “You’re OK,” she says, ears still protected with her little purple hands.
I wish she didn’t have to be so brave. I wish she’d grown up at home with her twin sister. Dumping flour all over the kitchen floof and drawing on the walls with markers. I wish other little babies didn’t have to be so brave either.
If you want to help, please donate to this gofundme–they’re developing new technology for the next open heart surgery my daughter will need all too soon. It could double her life span. https://www.gofundme.com/support-the-fontan-blood-pump
Thank you ~