Monday, June 18, 2012

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......

Friday, June 8, 2012

Part of mending a heart is healing the metaphorical heart - dealing with the feelings that come from the hurdles we go through. I was 40 years old before I met another CHD survivor - I'm  now 46. The introduction was a gift - my surgeon, a man who figured out that heart patients, and specifically a demographic virtually passed over by the medical community, needed some kind of support or connection to patients with similar backgrounds. As a CHD kid/adult I lived my first 40 years relatively alone with my CHD. I didn't really notice much that I was alone even after I had to have OHS a 2nd time when I was in my late 20's. It wasn't until the most recent OHS in 2005 when I finally realized what I had been through was traumatic and that connecting with someone who had been there, too, seemed imperative. And, to be honest, until my doctor offered the connection, I had no idea how I would have made one with another CHD patient.

But once the connection was made, pieces of my life began to make sense and I started to feel like what I had been through could be healed. This amazing heart patient I was introduced to, is now a very important friend to me and the reason I am writing about CHDs and mending hearts. She called me shortly after I had returned home from the hospital and we spent over three hours on the phone with each other almost completing each other's sentences. We were both amazed at how similar our lives had been, even how similar our family experiences were. There is a dynamic in a heart family (I suspect all families who have a chronicallly sick child) that can happen, in fact, probably cannot be avoided by no fault of  the family and my friend and I discovered our families fell into this dynamic. We were able to talk about our fears, our guilt, our role in the family, our concerns about our futures, our medical experiences, our feelings about how we had turned out, and how we had survived. Don't get me wrong, our families were amazing given the circumstances, but until you have your sternum cracked open, you just cannot relate to what we went through. Subsequently, talking to them about the things we were able to share with each other was not an option. Some things, your parents don't want to hear you say.

I look back on the introduction and I always say a prayer of thanks for Dr. Mainwaring and his insight for offering the opportunity to connect with another CHD survivor, it changed my life. It was like the other half of my 'heart' was found and restored. There is someone else in the world with whom I can share the burden of my 'broken heart'. While this first introduction was profound for me, I have met many more CHD survivors and each time I am given the honor of that meeting, I am humbled and further restored by the power of that connection.

"Friendship is born at that moment when one person says to another:
"What! You, too? Thought I was the only one."
~ C.S. Lewis