DISCLAIMER:
This is a blog post from my personal blog:
It is an emotional look at how a child's heart defect can shape the child and the family. The story may seem sad and scary and painful, but I assure you, I am a happy, well adjusted, fully functioning grown woman. The journey my family travelled was ours.....yours may be different (I hope), but it helped me to write this story.
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.
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.
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