Until you have witnessed the strength, the determination, the sheer will to live, of a heart warrior … no words can help you understand. These kids – babies, many – and those who grow to be older, the lucky ones – fight and fight and fight until there simply isn’t fight left in them.
That’s the part fear attaches itself to. When will the fight get too hard, the battle too long?
I grieve so deeply about the strength Kiran must have, all he has had to endure, and he has had a relatively “easy” heart journey compared to so many. I try not to compare, but there is such a thing as survivor’s guilt, here, just like there is such a thing as post-traumatic stress disorder. We medical mamas have a lot more in common with soldiers than you might think.
I have written about this one instance so many times before, when I reflect on Kiran’s strength. It brings me to tears every single time I think about it, even as my mama heart swells with pride at how strong and amazing my little man is. When you get an EKG, they clip all these little alligator clips to the electrode pads (I would have called them electrode stickers, but a quick google search corrected me) they stick to your skin in order to do the test. It has been awhile ago now – probably over a year ago – and I was watching Kiran’s face as he sat in my lap, and they were clipping these pads. I caught a brief wince – sudden and swift, a look of pain – and then Kiran’s face went back to a neutral expression. I looked to see what could have caused it – and the nurse had accidentally clipped his skin instead of the pad. It was fixed immediately, as my heart broke for him. Imagine: a tiny alligator clip pinching the skin on your chest. Ouch.
He didn’t cry. He barely even showed his pain. It makes me wonder how much pain he endures that maybe I am unaware of – and it’s not as if I could take most of it away, anyway.
I wish a band-aid and a kiss was all we needed.