I was asked to be a part of a project another blogger is working on: Faces of CHD -- she's over at Inspiring Hearts - you really must check her out. Her goal is to allow people to see how varied the lives of people with congenital heart problems are. She sent a series of questions/topics our way and asked us to write answers or tell stories, or something in between. This is my entry, which is posted on her blog as well. Enjoy!
The best way to start this response is to say: I create, I teach, I laugh a lot. Those three things have been constant since I was a child and certainly guided me through everything else to come. I was born the first grandchild, first niece, the first child you name it; in my family I was a FIRST and I believe most of my family members were learning how to be around a child even more than one who was "different." In their own ways, each of them had this bond with me that was unique... and it was wonderful, each taught me a song or a silly hobby or habit and these became the repertoire for the bedside entertainment I provided for nurses and doctors when I was 6 and having my surgery. From the earliest days of my childhood, I can remember imagining the world and playing it out in my household, I lived in a universe of make-believe and crafts.
The crafts part I have taken with me and can still be found scrapbooking or creating "art projects" as friends like to say. Because these were my hobbies, whenever I felt sick or pained I could travel to a place in my mind where life was full of adventure, or I could make something to cheer myself up.
I think being a teenager or pre-teen was when the idea that I was different sunk in more, before then my friends in school had always treated me well and watched out for me. I held the role of the leader, mom, deep thinker in my small Catholic school class. I was certainly more adult than peers at a younger age and often gravitated to helping out teachers, secretaries, and the like. Even in HS, I volunteered to help out in the Nurse's Office when I was unable to go to gym.
I think it was at this point in my life I realized I would either write or teach. Both seemed so ingrained into my being. I wrote to get out what bothered me, I helped people who might be in worse shape than myself to keep perspective. It's no wonder I now teach and write the occasional blog or poem. Although the times in these years proved to be awkward, both because I was going through puberty late and because I was starting to see my own limitations... I did come out of it with a tight group of friends who are phenomenal individuals.
They keep me moving and they have never treated me as less of a person, unique yes, quirky hell yes... but they all are too. My Mom affectionately calls us "The Toys from Misfit Island" naming me Hermie. These are the kinds of people who immediately clean up a mess when I am shaky and drop a glass, they were in charge of remembering my medication in HS. They have been there through palpitations, emotional meltdowns, family crises, and more. My one friend a big guy with the most outwardly friendly personality often accompanied me to pediatric cardiology offices and when I would come out of my appointment I would find him leading a game for the kids waiting in the waiting room, or watching some kids movie which I would have to tear him away from. Other friends would search endlessly with me to find bathing suits that would cover my scar, so it wouldn't burn or find a dress for formals that wouldn't make all my veins stand out. They were my rock when I was having scary moments and being looked down on by peers.
Many outside observers could not appreciate the extra help or extended time I sometimes received to finish projects or assignments. Had any of them followed me home, or visited like my core group did they would know I was pushing as hard as I could to be "normal". They were a source of comedy, sometimes finding new ways to cheer me up, reviewing the day I had missed in school through mock productions of HHS Live, or generally being their goofy selves... I still have laughs with them about all our shared memories good and bad.
Now it's during these teenage years that I suppose everyone starts looking at their parents, doctors, family members, teachers, etc. as humans rather than looming figures of authority and I must say I was surrounded by a pretty good group. My parents for their part balanced each other out. Dad has always been the more cautious one Mom has always been the best friend to everyone in my group in fact. My Mom is THE Mom to go to for advice even if it is a little on the risque side. And by risque let me get this straight, I was never discouraged by either of my parents to live life or go do all the dumb things teenagers did... I was just square and didn't. My group wasn't fast, we had our fun, our movie nights at friends' houses or parties, our nights out at the beach, etc... but we never got too wild. Stayed out past curfew, sure, did one or two of us try drinking and smoking, sure. Not me -- my first drink came after I was 21 and I have never even considered smoking. I did in a rebellious stance with my doctor get my ears pierced a second time, he thought I was insane not to pre-medicate, etc. He was a worry-wort of the worst kind but it was almost comical and even he knew if I had wanted to do something more uniquely teenage -- I would. As far as boys went I had all the typical drama and crushes, but being the nerdy "buddy" girl I didn't get much action as it were. I waited until my college years to really have good relationships. Most knew early on about my heart condition and some experienced the downsides of it too.
Now at almost 30, I am working in a school setting - where I love to be. I write a blog when I am inspired and have a loving relationship with an outstanding man. We just added a cat to our family and couldn't be happier. Things are a challenge now physically as doctors figure out some new issues but knowing my support system is out there makes all the difference. I scrapbook our memories and those of friends and family who are no longer in my life either because of distance, change, or passing on. I am always behind the camera at events, always making sure everyone is enjoying their time. I try my best to keep in perspective that life is good. I always seek out ways to help others who are having a harder time than me, or who need a little extra TLC.
Recently, I worked with a child who has a CHD, and seeing him wrestle around with the other kids has given me a great deal of hope. Watching his poise and maturity makes me think back to my own days at that stage and wonder if I looked the same to outside observers, just a kid with a lot on her shoulders. One who tried her best to balance being a kid and being a kid with a heart condition. As I often say to people, I forgot I never mentioned my heart to you, I just assumed you knew, it seems to me as if it is woven into the fiber of who I am. I am thankful for it at times, it has made me strong in the face of challenges, compassionate to those who need it and creative in ways I am truly excited by every time I start a project. It would be impossible for me to picture my life without picturing everything that comes along with my "crazy heart."
So, some of this last information has changed as I am now I am in my 40's and happily married. I've survived a few more procedures and surgery as well. All in all -- life is pretty good and you won't hear me complaining (too much that is).
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Uncle Louie