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.
me
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