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

Sunday, August 14, 2011

Let me tell you something about a broken heart....(repost from April 2009)

I have one. A broken heart....well, technically it has been repaired, literally, technically. How? You ponder. Well, it's not magic, however, but by the grace of God and some really good doctors, it has been fixed. Three times. You'd think they would have done all the repair work once, the first time. However, such is the nature of a congenital heart defect, the one they call "Tetrology of Fallot". So, this is the beginning, the true beginning of my journey through life, literally and metaphorically. I was born a 'blue baby' in 1965. My parents were young, 19 and 21. I don't think at any age you are prepared to hear that your baby is broken when she arrives. It's not like you can send her back and get a refund. Or, send her back and ask for a replacement.

As I weave my way through this story, I will probably lose my way occasionally as I also tell the story of my family. Ultimately, it is our story. All parts, good, bad and ugly, but, I hope, ultimately beautiful. In the metaphorical sense, I believe that we can break our own hearts, merely by ignoring love, or maybe avoiding it or being denied it. I feel that I have had two kinds of broken heart all of my life. One we fix with surgery, the other, we fix with love. I will be digging deep to tell this story and know myself well enough that I will likely stray from the path, in order to avoid painful parts, but, I promise it is my intention to get the 'heart' of my destiny. (I know, such tacky cliches', but, I can't help it, I LOVE THEM). Not only will I be traversing my own pain for this story, but, I will need to get my family to discuss what they felt and how they managed.

Looking back to when I was a child I don't have a ton of memories about my illness. I have some memories, but, I cannot be sure they are my memories or are memories of stories about what we all went through. Like, for instance, there is a box full of hand made get well cards from my kindergarten class, that I still lug around with me from home to home, from kids I do not remember, even the slightest bit. Also, in the box, birthday cards for my mother, as my 1st open heart surgery was just a few days before her 24th birthday. I don't have a direct memory of this, but a story told to me by my grandmother, about my dad tying a big red bow around my chest, making the 'fixed up heart' her birthday gift. See, origins of some of my memories and or emotions may be skewed by the handing down of the story.

I do remember, very vividly laying on the operating table, drifting in and out of awareness as they prepped me. I would dose off, they had me somewhat sedated before they actually put me to sleep, and I remember becoming alert off and on and when I did, it seemed like I was strapped to the operating table in a vertical position and if I could concentrate, the table seemed to lower itself to a horizontal position. I know that this was only an affect of the sedation, now, as an adult who has been through the same surgery two more times, but, back then, it was scary and alarming. I also remember how huge the overhead lights seemed to be and how close they felt to me as I was laying there trying to stay alert. I remember the oxygen mask they put on my face and then the lights went out.......I try to remember stuff from back then, but, honestly I think my memories are tainted by the stories my family tells.

In the magical memory box there is a scrapbook with get well cards from family and friends and photos of me in the hospital. Even after I look at the photos I don't remember what was going on when the photo was taken. Mom J used to tell a story about a fancy pink nightgown that completely boosted my spirits and there is a photo of me in that gown. I do not remember wearing that gown in the hospital, but, I do remember the gown afterward and it being around for many years after the surgery. Pink chiffon over pink polyester, with ruffles. I remember stories about the nurses paying a bank I had sitting on the table next to my bed a quarter to take blood from me. I remember a story about taking out my own stitches with plastic, round nosed, kid scissors. I apparently did this in the night, before I was to have them taken out by the doctor, the next morning.

I think I was probably pretty scared through most of the first surgery ordeal. What I do remember is being worried about everyone else. What I know, is that we've all been shaped by my broken heart, we've all suffered some emotional trauma, some of us have come out the other side stronger, others, not so much. I carry that with me, even though intellectually I know that I did not control how things unfolded, my soul, my heart, they carry these truths with me.

Okay, we're getting there, some pain. At the ripe old age of 5 I already believed that what we all went through was my 'fault'. How does a 5 year old reconcile that? You begin to clean up what you think is a mess you created. Not having the wherewith all to disseminate between 'fault' and circumstance, a child of 5 begins her life as a 'care-taker'. Only to become a life long co-dependant. (This is a label I judge, because it is what I am, whether I like it or not). Fortunately, I can have my heart fixed with a little surgery, yet, I cannot find the person who can surgically remove my life long affliction of co-dependency. There are many other elements that go along with this observation, which I hope to uncover as I stumble along. But, I think I am done for tonight.

This is a repost from a blog I used to write.
(Yes, it is similar to an earlier post on this blog).

Monday, July 25, 2011

Art and my ♥

As part of my heart story I need to include some art. I am an artist at heart, (hee hee) and I love all kinds of art mediums. I enjoy being an artist and also I enjoy the art of others. I am blessed with a sweet, kind hearted nephew and the ink drawing you see above was a gift from him after my heart surgery in 2005 depicting my heart. Mended. Sutured. Stitched. Repaired. Golden. The drawing isn't very big, and it's framed in a little 4x6 gold frame and I LOVE it. The drawing inspired me from the day my nephew gave it to me.

Three years after that surgery and the gift of the drawing I went to school to study silversmithing. In the fall of 2008 I received my certificate and I became a bench jeweler. By that time I had begun my journey on the path to my real life as a CHD Advocate and while at school designed my first piece of CHD Awareness jewelry. The design for this piece came from my nephew's drawing. The necklace is the model for many of the designs I have in my ESTY shop, a sterling silver hammered heart (beat up, so to speak), cut in half,  and then stitched back together with gold and suspended on a sterling silver chain. Over time the design has evolved and I've reproduced it with different metals and in different formats and now you can buy my Mended Heart in sterling silver, brass, copper and precious metal clay or fine silver, in either a ring, necklace or bracelet!  Initially I hoarded the first Mended Hearts, but then realized they could be used to start a conversation and eventually I began giving them to family members to wear and then to sell them on ESTY.

You will see on the right side of the blog there is a display of some of the pieces and a link to the shop. I hope you will stop by and perhaps acquire a Mended Heart to show your support. Part of the proceeds goes back to Mended Little Hearts, so, you'll be making a donation to them as well!

Peace ♥

Saturday, July 23, 2011

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 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 ♥