Monday, April 18, 2011

Open Letter to My Heart

Dearest Heart,

We have to be strong, and we have to survive because we have plans. Got it?

I'm not one to bully you around, but this is kind of serious. We have to

remember all of the ones we left behind in Philadelphia – baby Alice who

loved us to much she could not have the curtain between our beds

closed, Lauren with the long, scraggly brown hair, Raven with the

braids, the 100-watt smile and the cool sunglasses, Jeremy, the

teenager with the ponytail and guitar, baby Jordan who we watched in

the playroom while his exhausted father went to get himself some

more coffee, Nathan who we had wheelchair races with on the fifth

floor west wing. These and other kids we met along the way give us

purpose, a duty to go on in case they were unable to. We can't let

these precious memories and lives go to waste. Of course, it was easy

back then, to be friends with kids like us. Life was still the biggest

adventure of all, and take it for granted I did. I was completely

unaware of the real danger we faced.

Unaware, ignored, I can't tell you which now.

With adulthood came the bitter cognizance about mortality and

what having a congenital heart defect truly means. It had been a good

fifteen years since I knew anyone else with a CHD and frankly, I was

comfortable with that. When I did become involved with CHD-related

volunteer work, (camp del corazon) my rolodex was suddenly filled with

wonderful individuals living with a profound understanding with what I

have gone through because they had, too. I also knew children,

children!, with complexities more convoluted and harrowing

than mine. Admittedly, I struggled with accepting these people in my life

and for the first few years, I would come home from camp and break

down emotionally. I love them all so much and I do not want anything

negative to happen to them. Opening my life and my heart to them has

been an on-going battle because I fear getting close, allowing myself

to care for them and ultimately loose them. One could argue that an

individual runs this risk getting close to any human being, of course,

logically I know this. I am not dealing with the logical part of my brain,

however, I am dealing with the dominant emotional part that has to

weigh the option of keeping a cool distance versus embracing these

friendships with my all.

I can accept my own congenital anomaly, my own medical pain. I

can endure the blood tests, the stress tests, the lack of energy, the

medication, the surgeries, but seeing others go through this breaks my

heart and paralyzes me with fear. I'd venture into the depths of the

River Styx and deal with Hades directly on their behalf if I could. There

are no deals with conditions such as these, however, and certainly no

guarantees. Giving into that vulnerability, permitting that risk – the risk

that someone simply may not be there any longer and I will feel loss

and sorrow – has been a terrible inner battle. I have come to realize,

however, that it is a battle I have learned to accept and even

welcome. The friends I have made, these wonderful, brilliant individuals,

have only made my life brighter. Let's keep the lights burning as long as

we can.


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