The Man who showed me how to be brave.......

No mended heart story is complete without talking about The Dad. Here's my Dad holding me up as he has always done. I don't have a single memory about any part of my medical life that doesn't include him front and center, even now. I know he had to make the hard decisions, he was the voice of reason, the rock that held our family together. I don't really know what his first reaction was to the news that his new baby girl was broken, I've asked him to tell his story and maybe some day he will. What I do know is that I never believed something bad was going to happen to me because I knew my Dad was going to be right there with me every step of the way. As a child my most vivid memories during my hospital stay were that he literally slept on the floor in the ICU next to the bed, there wasn't a moment that I was aware of that he wasn't there. I remember being on the vent and wanting the tube out and trying to grab a hold of it and my Dad stopping me - calming me down, telling me to relax and rest, that this part would be over soon, to just relax. His voice always had a calming affect and it got me through the scariest parts, because, seriously, breathing against a ventilator is very upsetting. I never saw him scared, Lord knows he had to be, but he never let me see any crack in the Armor.

In the current CHD world, 'cause there wasn't a CHD world back in my early days, you usually see Mom front and center - not that there aren't any Dads front and center, but Moms are mostly the ones out there leading the battle. In my CHD world, my Dad has been my counsel, the voice of sanity, my rock. After my Tet repair in the early 70's I had no cardiac follow up until 1993 (we were told I was 'fixed' and to go on about our lives) and so the next time my CHD showed up in our lives I was an adult and found I would have to make major decisions about my care by myself. There was no 'transition' for me, I was a heart baby, then BAM, I was an ACHD survivor, but even in 1993, there was no CHD community like there is today. So, in the face of having open heart surgery I looked to my Dad, who was at my side holding me up. I know he must have been as devastated as I was, but I never saw him break down, always positive, never letting me believe there would be any outcome but the best possible one. He let me scream, cry, be angry, cuss out God, stew, wallow and eventually, quietly, with love, helped me regain my dignity and pull myself up and face what was coming. It wasn't like he had a choice and he accepted the burden we all shared in the circumstances we were dealt and showed me how to look fear in the face and fight anyway. God bless him, he protected many a health care worker from my wrath and he would call me on my crap when I was pulling the snotty kid routine (yes, at 20 something years old, I was being a snotty kid). And, again when I was almost 40 and was told I needed more surgery he held my hand, calmed me and provided the levity I needed in order to prepare for the fight one more time.

My Dad has been to battle with me many times over four decades and I can't imagine another battle without him. I feel that his battle, is far bigger than mine, as I get to sleep through most of mine. I don't know who he held his counsel with during these skirmishes, he is very close to his mother and his sister and maybe he's leaned on my sibs, I honestly don't know, he's never let me see him with fear or doubt or anger at the situation, just love and courage. Maybe some day he will share HIS story......

Chapter One.....of my story

This is me and my mom, Donna. We look pretty good, eh? I look chubby, happy, animated and not that you can tell because this is a black and white photo, but I look pretty healthy, you know, like I might have a rosy glow, right? And, of course my mom looks adorable with her gorgeous pageboy haircut and ribbon in her hair. And, honestly, I have no idea when this picture was taken of us, but it's one of my favorites because we do look happy and healthy.

I was born with Tetralogy of Fallot, most commonly known as "blue baby" and therefore, not in good health. And, if I was taking a guess I would put the time of this photo somewhere around the time I was to have the Blalock-Taussig shunt put in, perhaps even after the prodecure.  I had that procedure at around 18 months old. The shunt was a stop gap until they could do open heart surgery a couple of years later.

When I try to remember back to the beginning of my heart story things are fuzzy. When I was having my first open heart surgery the medical world was quite different than it is today and families didn't have the access to information like we do now. My folks were young when they began navigating the world of congenital heart defects and there weren't a lot of resources in the late 60's, early 70's to help them process what was happening to their little girl. Our immediate family, grandparents, aunts and uncles, were there to help when and however they could, but there were no CHD survivor families to counsel them or show them the ropes. There were no congenital heart defect support groups, not even the American Heart Association was able to provide navigational resources, they were virtually on their own.

When my mom and I revisit those days, she's a little fuzzy, too and sometimes you can still hear a little anger in her voice when she talks about feeling cheated because she got a broken baby. I can't imagine what it must have been like for her, after she took her baby home, seemingly happy and healthy to find out that no, she wasn't healthy and she would need major surgery and follow up in order to correct what was wrong. As the baby, I can't tell you what it was like for me, because thankfully, I don't really remember.

Later on, when it was time for my first open heart surgery, there are things I remember, vaguely. Mostly that I received and inordinate amount of stuffed animals, night gowns and change. Yes, change, I was horribly uncooperative any time a nurse had to poke me with a needle, so at one point a coin bank was brought in and the nurses had to pay me to draw blood or give me a shot. And, there are a couple of things I remember from being on the operating table, weird things.......like the huge overhead light and the smell of the oxygen mask they put on me and the feeling of floating above the operating table right before I fell into oblivian and that was it! Oh, yeah and afterward I just remember trying to pull the trach tube out and having my dad stop me. Some occaisional wafting memories of an oxygen tent and alternately an oxygen mask, but not much else.

My story is long, really and doesn't just encompass my childhood procedures, as having a congenital heart defect is a lifelong complication. This doesn't mean that my life was in any way diminished because of my defect, it just means that it is a part of my life for all of my life. My story is about living as if I wasn't ever 'broken'.

It is my hope to encourage families who are dealing with a congenital heart defect to look at their child with clear eyes and to not see them as broken or different, but as warriors who have the strength and fortitude to battle through the road they have ahead of them and be an ispiration for all who cross their path.

Please visit this blog often, I am hopeful that families will open up to me and share their stories so that we might all heal each other through compassion and friendship.

I will add installments of my story as the blog grows and I will post information regarding congenital heart defects, awareness campaigns and events and support resources.

Please feel free to email me with any questions and I will do my best to get you the information you need. And, PLEASE share your story so I can post it here.

Peace ♥
S