Could it be that one year has passed since my surgery? It's funny how quickly life moves from one death defying moment into oblivion. But, here I am, seemingly unscathed and very much alive! Last year at this time, I was making my final wishes. Morbid, yet comforting. Gina would try to interrupt me as I listed what I wanted to happen if the unthinkable happened. I found peace in this task. Perhaps I'm a control freak, but just the same, I'm glad I did it. I think everyone should have to face such an occasion in life to awaken senses one thought was impossible to possess. I wasn't eloquent nor did I possess one shred of poise. I was either terrified and psychotic or on auto-pilot.
I recall sitting in my surgeon's office, Dr. Huddleston, with my arms folded and rolling my eyes at my sister's every concern. Dr. H sat calm, cool and collected- only breaking a slight grin when Gina and I bickered at one another. I wanted to stand up, flail my arms around and yell "how can you be so calm at a time like this?" Perhaps I wanted him to accommodate my mania, but he just wasn't having it! He'd had dealt with this before.
I wondered if I'd live. Then in the ICU, I wondered if I'd ever stop throwing up. I'd made explicit plans that everyone was to leave the room if I were to indeed begin to vomit, but in the end, everyone in St. Louis Children's saw me at my worst. I came home a slept upright in a recliner for a month. I took supervised showers, and had a babysitter and chauffeur for over 6 weeks. Now, I probably annoy everyone with my factoids about Congenital Heart Defects (or Congenital Heart Disease depending on your preference). No longer does covering up the bright red line on my chest seem important. What's important to me now, is making sure I can do what I can. I am lucky. I am blessed. I am ALIVE! There are days that I ask myself "Was it just a year ago that I had surgery?" Then there was the 1st day in March that I stood on the steps of Capitol Hill in a new suit thinking "Wow! How did I get here?" I'm still working on the poise and maybe even eloquence, but indeed, what a difference a year makes!!!!
Tuesday, February 7, 2012
Saturday, June 18, 2011
Memories Of My Dad...
The more that time passes, the more my dad seems like a myth. It's been so long since he existed here, yet he still does. I'm told I look and act like my dad, that my stride is his. I listen intensely to those comments as if I never knew him myself. I cling on to anything that acknowledges him being here at one time.
My dad was tall, dark, and handsome. He had a undeniable presence about him. If he walked into a room, everyone took notice. It was more than him being a police officer. When he smiled, the whole room lit up. He was smart, witty, and had an infectious laugh.
My sister and I had an 8 PM bedtime every school night, which being night owls at an early age was an awful thing. We had a tradition of sorts in which after lights out and after we were under the covers, we'd yell for dad: "Dad, come see us!" He'd come in and lay between us on his stomach and we'd have our nightly talks. He talked about what we were going to do at school the next day, or talk to us about our favorite band or movie star crush. Seemingly he understood it all; even though it must have been hard to relate to two little girls who said they were going to marry men with long hair who wore make-up, or who were going to move to New York or Paris without plans. We made him laugh and in turn he made us laugh. Only the nights that Dad worked until 11 did we not have our talks . Gina and I couldn't sleep until we saw the lights of his squad car on top of the hill, on the graveled road above our house, burst light into our dark room. Sleepiness settled in as we heard the door open and him in his room taking change out of his pockets and getting out of his uniform. I always felt safe when dad was near. I felt safe knowing he made it home and the bad guys didn't get him at work.
You take so much for granted when you're young. You expect your parents to die when you're middle aged, not at twenty.
I knew dad was larger than life. There are many lives that he saved, people who still live today because of him.
I watched him pull a family from a burning car once. We were coming back from St. Louis when a car flipped in front of us. Glass shattered, rugs flew out the windows; dirt, gravel, and confusion was everywhere. The car came to rest on it's roof and began to smolder. Dad calmly pulled over and said to my mother and me "stay here". He pulled a young couple from the wreckage and as more smoke poured out of the windows he crawled in only leaving the bottom of his feet exposed. He came out with a tiny crying baby. Minutes later the sirens and red and blue lights came. The car was completely engulfed in flames. My dad saved a whole family without hesitation. He was amazing! He did this several times even becoming an honorary Kentucky Colonel for lives saved on a bridge connecting Illinois and Kentucky.
I still can't help but ask who was my dad. I'd like to sit with him and ask him about his time in Europe or what dreams he had as a kid. I'd like to ask him if he is proud of me and if he thinks If I'm a good person. I'd like to just look at him to remember everything I've forgotten.
He told me I could do anything I wanted. When I was picked on at school and called names he knew the right thing to say. Went I felt like an ugly duckling and boys didn't like me he told me I'd be a model one day and made my first trip to New York possible. He told me to never settle for ordinary and he truly believed in me.
So many things I don't know about dad and I may never know. Maybe I have to look inside myself because my sis and I are all that's left of him here. Maybe that's why we had our talks and inspired our artistic nature; because there would be a night that he woud not be there to help us sleep, to calm our uneasiness, to send us in a direction.
I guess I'm still shocked that my dad was defeated. Cancer was the bad guy ( and not his job that would take him away).
You never get over loss like that. I'd rather feel my heartache than to never have had him as my dad though. I can't help to wonder if he were still here today what life would be like. What would he be like? Would I know him any better? I'm betting I would and that's what sucks! The more time passes, the more questions I have and the more the small things become cloudy.
I wanted to share a little bit more about him as I have in the past. It's my way of keeping his legacy alive, to tell stories like the ones I love to hear about him. It's my way to say I love my dad. I've been thinking about him today and the wreck that we saw so many years ago. I wonder if those strangers ever think of dad or wonder too, if he ever really existed.
Saturday, May 28, 2011
On Memorial Day...
This weekend is Memorial Day weekend. It's an event my family always observes because we have lost many in our family- two in particular who lost their lives while serving our country. They were both cousins and both named Troy. Because of these two and the fact most men in my family were military men, I have a huge amount of love and respect for veterans.
I have to say that I find it utterly ridiculous that the majority of people in this proclaiming they are something else; Irish, Dutch, Russian, German...not American. I guess everyone wants an identity and saying you're from someplace else seems cool. Granted, the majority of my dad's family are still in Germany. Dad, however, was born here and served this country and risked his life like so many others. His family came here with the dream that anything is possible once you reach the shores of this great country.
My cousin's were from my mom's side. Troy Partain, my Great-Aunt Lula's son, was killed during World War II. Troy Ralph, my mom's nephew died in 1969 in Vietnam.
My Aunt Lula had an only child and loved him dearly. She was in her seventies when I was born and lived down the road with her sister, Callie. She was a tiny, frail little lady, who was absolutely one of the sweetest ladies I will ever meet. Troy joined the army when the US entered the war. To her protest, he left Hardin County and went off to basic training. Later he ended up in Alaska, where the US was rebuilding forces after Pearl Harbor was destroyed. In October of 1942, Troy was killed. Aunt Lula was later told there was a truck accident and he died a few days later from the injuries at only 24-years- old. Due to wartime restrictions, he had to be buried in Alaska. Aunt Lulie never got to say goodbye (like so many other mothers who's sons are buried on foreign ground). She mourned the rest of her life and I will never forget her tears. Many evenings, she sat on her front porch swing looking out towards the road. She once told me she used to sit there for hours watching and hoping that Troy would come walking down the road from the war. Even though a gold star hung in her window she never wanted to fully accept he was gone. Years later, a soldier visited the Sitka National Cemetery where Troy was buried and took pictures of his grave. He sent them to Aunt Lulie. This was all she had. It was her only closure. I can remember her clutching the photos and sobbing over him. I wanted to comfort her, but even at an early age, I knew no words could heal her heart. When Aunt Lulie died, Callie bought Troy a headstone that sits next to Aunt Lulie's. There's an empty plot at our family cemetery to honor him. Every year the local American Legion places a flag there for him. Sadly, no one in our family has ever been able to visit his grave site. Only in fiction does that exist. When I was in college I wrote a story called "He Sleeps In Alaska" after my mom's suggestion. I created a story in which Mom, Callie and Aunt Lula took a trip in 1976 to Alaska. It was one of the most emotionally draining pieces I have ever written. I hope one day that I can actually travel to the hillside where he's buried. I'll place flowers on his grave for Aunt Lulie and see the mountains that keep watch over him with my very own eyes.
It's ironic that his cousin, who was named after him, served in Vietnam. Troy Ralph was a handsome 21-year-old when he was drafted. He wrote my Aunt Callie often telling her his plans to buy a new car when he came home, or about the girls who were writing him from home. He always tried to be reassuring and brave. He had many hopes and dreams and was full of life. Who knows what he could have accomplished had he lived. He was killed on May 21, 1969 en route to Hamburger Hill. There were many stories as to how he died, but a few years ago my sister found a book written by one of his platoon members. He recalled Troy searching for a missing buddy and found him dead- and wired with explosives that killed Troy when he tried to move his friend. He survived only 6 months in Vietnam and thankfully his remains were sent home. Soon, Life Magazine came out with one of it's most famous issues; "One Week's Toll" an issue dedicated to all the soldiers killed the week of Memorial Day. Inside was Troy's picture. My Aunt Callie kept two copies carefully preserved and now my sister and I have them. A memorial bench sits outside of the Hardin County Courthouse dedicated to him as well. We gave his letters that Callie kept to his brother, who said he felt as if he found a missing piece of the puzzle who was his older brother.
These losses are something that my family has carried with them ever since. It was such a scary time and then to have lost someone you loved so brutally. These men (and women), like all who serve are more brave than I could ever fathom. I don't think I have the guts to leave home as they did to face war. In reality they are still kids, with hopes and dreams, some that never reach fruition. Even as I write this, there are those serving in Iraq who face the same dangers and so many who have already died.
The two Troy's are heroes to our family and this country. Although I never met them, I am proud to say they are family. I hope they know how much they are loved and cherished.
Even though we can go on and on about the problems with our country, it still is the greatest country in the world. We should be proud of where we are and that we are AMERICAN! We have freedom than only most can dream of. We take so much for granted in everyday life. Those who served saw the other side of life; horror, injustice, death and destruction. They paid with their lives or came home forever haunted. We owe them... everything.
Troy F. Partian
August 28, 1918- October 3, 1942
James Troy Ralph
November 13, 1947-May 21, 1969
** Re-post from 2008**
I have to say that I find it utterly ridiculous that the majority of people in this proclaiming they are something else; Irish, Dutch, Russian, German...not American. I guess everyone wants an identity and saying you're from someplace else seems cool. Granted, the majority of my dad's family are still in Germany. Dad, however, was born here and served this country and risked his life like so many others. His family came here with the dream that anything is possible once you reach the shores of this great country.
My cousin's were from my mom's side. Troy Partain, my Great-Aunt Lula's son, was killed during World War II. Troy Ralph, my mom's nephew died in 1969 in Vietnam.
My Aunt Lula had an only child and loved him dearly. She was in her seventies when I was born and lived down the road with her sister, Callie. She was a tiny, frail little lady, who was absolutely one of the sweetest ladies I will ever meet. Troy joined the army when the US entered the war. To her protest, he left Hardin County and went off to basic training. Later he ended up in Alaska, where the US was rebuilding forces after Pearl Harbor was destroyed. In October of 1942, Troy was killed. Aunt Lula was later told there was a truck accident and he died a few days later from the injuries at only 24-years- old. Due to wartime restrictions, he had to be buried in Alaska. Aunt Lulie never got to say goodbye (like so many other mothers who's sons are buried on foreign ground). She mourned the rest of her life and I will never forget her tears. Many evenings, she sat on her front porch swing looking out towards the road. She once told me she used to sit there for hours watching and hoping that Troy would come walking down the road from the war. Even though a gold star hung in her window she never wanted to fully accept he was gone. Years later, a soldier visited the Sitka National Cemetery where Troy was buried and took pictures of his grave. He sent them to Aunt Lulie. This was all she had. It was her only closure. I can remember her clutching the photos and sobbing over him. I wanted to comfort her, but even at an early age, I knew no words could heal her heart. When Aunt Lulie died, Callie bought Troy a headstone that sits next to Aunt Lulie's. There's an empty plot at our family cemetery to honor him. Every year the local American Legion places a flag there for him. Sadly, no one in our family has ever been able to visit his grave site. Only in fiction does that exist. When I was in college I wrote a story called "He Sleeps In Alaska" after my mom's suggestion. I created a story in which Mom, Callie and Aunt Lula took a trip in 1976 to Alaska. It was one of the most emotionally draining pieces I have ever written. I hope one day that I can actually travel to the hillside where he's buried. I'll place flowers on his grave for Aunt Lulie and see the mountains that keep watch over him with my very own eyes.
It's ironic that his cousin, who was named after him, served in Vietnam. Troy Ralph was a handsome 21-year-old when he was drafted. He wrote my Aunt Callie often telling her his plans to buy a new car when he came home, or about the girls who were writing him from home. He always tried to be reassuring and brave. He had many hopes and dreams and was full of life. Who knows what he could have accomplished had he lived. He was killed on May 21, 1969 en route to Hamburger Hill. There were many stories as to how he died, but a few years ago my sister found a book written by one of his platoon members. He recalled Troy searching for a missing buddy and found him dead- and wired with explosives that killed Troy when he tried to move his friend. He survived only 6 months in Vietnam and thankfully his remains were sent home. Soon, Life Magazine came out with one of it's most famous issues; "One Week's Toll" an issue dedicated to all the soldiers killed the week of Memorial Day. Inside was Troy's picture. My Aunt Callie kept two copies carefully preserved and now my sister and I have them. A memorial bench sits outside of the Hardin County Courthouse dedicated to him as well. We gave his letters that Callie kept to his brother, who said he felt as if he found a missing piece of the puzzle who was his older brother.
These losses are something that my family has carried with them ever since. It was such a scary time and then to have lost someone you loved so brutally. These men (and women), like all who serve are more brave than I could ever fathom. I don't think I have the guts to leave home as they did to face war. In reality they are still kids, with hopes and dreams, some that never reach fruition. Even as I write this, there are those serving in Iraq who face the same dangers and so many who have already died.
The two Troy's are heroes to our family and this country. Although I never met them, I am proud to say they are family. I hope they know how much they are loved and cherished.
Even though we can go on and on about the problems with our country, it still is the greatest country in the world. We should be proud of where we are and that we are AMERICAN! We have freedom than only most can dream of. We take so much for granted in everyday life. Those who served saw the other side of life; horror, injustice, death and destruction. They paid with their lives or came home forever haunted. We owe them... everything.
Troy F. Partian
August 28, 1918- October 3, 1942
James Troy Ralph
November 13, 1947-May 21, 1969
** Re-post from 2008**
Wednesday, May 18, 2011
Who's with me?
Over the past year and a half, I managed to gain 15 pounds and get as out of shape as I could possibly get. Granted, a large factor was my heart issues. The other factor was how I dealt with all the issues in my life: eating- poorly I might add. I should know better! How many hours have I spent on a treadmill? An agonizing half hour in which I'm huffing and puffing burns off maybe one cupcake. Somehow, when I'm recovered from my workout, I'd quickly downplay the agony of the gym. I'm not proud that I have bouts in which I'm a ravenous hog. I guess it could be worse. Some people deal with stress in other ways: they smoke, drink or pop pills. Thankfully my metabolism is decent enough. And thankfully I have enough vanity and sense to know it's mind over Cheetos. We all use food as a crutch, a pacifier, a way to pass the time. We really don't need all the crap we eat, so we should stop lying to ourselves!
Even when my heart was having issues and my right ventricle wasn't fully functioning, I worked out. Imagine taking a 3 mile walk- through water. That's what it felt like. My arms and legs felt as heavy as lead! I still did it, and I didn't die. As a matter of fact, it's why I bounced back so quickly in ICU after my surgery. If I can do it, anyone can do it! I don't let myself get away with a pity party for too long and nobody else should. I might add that I have several CHD friends who have either had a heart transplant, are awaiting a heart transplant, have a pacemaker or have some sort of heart failure that require taking a lot of meds. Guess what? They get out and exercise just about every day!
Ultimately, it's a choice. Sure, genetics play a small factor and certain health conditions, but that's only to a point. When I don't like how I look, I know it's was mainly my choice to eat unhealthy.
Recovery from surgery is no easy task. Something about facing death that makes you want to take care of yourself. I've been walking and doing light weights for 45-60 minutes a day. Sometimes I wake up tired and remain that way all day. I know it will pass and by the first day of summer, I want to be close to my goals.
I'm just as human as the next person, but I can't sympathize with those who go on and on about being unhappy with their weight if they don't even try.
I'm determined to get out of my bad habits and make the changes I want to see. I know how it's done. We all know how it's done! Who's with me? Oh, and as I write this, I'd like a cupcake. But tonight the cupcake loses!
Even when my heart was having issues and my right ventricle wasn't fully functioning, I worked out. Imagine taking a 3 mile walk- through water. That's what it felt like. My arms and legs felt as heavy as lead! I still did it, and I didn't die. As a matter of fact, it's why I bounced back so quickly in ICU after my surgery. If I can do it, anyone can do it! I don't let myself get away with a pity party for too long and nobody else should. I might add that I have several CHD friends who have either had a heart transplant, are awaiting a heart transplant, have a pacemaker or have some sort of heart failure that require taking a lot of meds. Guess what? They get out and exercise just about every day!
Ultimately, it's a choice. Sure, genetics play a small factor and certain health conditions, but that's only to a point. When I don't like how I look, I know it's was mainly my choice to eat unhealthy.
Recovery from surgery is no easy task. Something about facing death that makes you want to take care of yourself. I've been walking and doing light weights for 45-60 minutes a day. Sometimes I wake up tired and remain that way all day. I know it will pass and by the first day of summer, I want to be close to my goals.
I'm just as human as the next person, but I can't sympathize with those who go on and on about being unhappy with their weight if they don't even try.
I'm determined to get out of my bad habits and make the changes I want to see. I know how it's done. We all know how it's done! Who's with me? Oh, and as I write this, I'd like a cupcake. But tonight the cupcake loses!
Thursday, April 21, 2011
What is beauty anyways?
When I was a teenager, and as trite as it seems, I hoped to one day become a supermodel. I was tall and skinny, but I could walk into a room unnoticed. I wasn't asked to prom nor did I ever have a boyfriend in high school. A couple of years later, I was wondering around the streets of New York going to open calls at some of the most prominent modeling agencies in the world: Ford, Elite, Wilhelmina, IMG, Click, to name a few. Sometimes I only got as far as the receptionist, who took my photos and promptly returned with a "you're just not what we're looking for." It could have been much worse! I saw hundreds of girls have their dreams squashed right before my eyes. They were the probably popular girls at home: the prom queen, the cheerleader, or the daughter of wealth who got everything she ever wanted. In New York, they found that life can be extremely harsh. These were the type of girls who wouldn't hesitate to point out my flaws. There, they had thick thighs, bulging eyes and whatever perceived flaw an agent would detect on a short glance. Mostly, these girls didn't get past the height issue, even though they tired to strut in 5-inch heels, everyone knew they were 5'4. If you didn't win the genetic lottery and have at least a 5'9 stature, you could not be a model. The standards of beauty are ever changing but they are getting harsher. Tall, young and thin will always be in fashion, but the boundaries are puzzling.
Somehow, I dodged harsh criticism in those agencies (and sometimes I received positive feedback and callbacks). Perhaps I had already paid those dues. In the end, I was awkward looking at home, but apparently not awkward enough in New York. There are times I regret that I gave up on the modeling idea. I was encouraged to keep at it. Over the past few years, I wonder if I could have survived the harsh criticism any female receives if they have any notoriety. My weight has fluctuated at times and I am past 30. There are things I don't like about my face, but I could only imagine how it would be pointed out and repeatedly scrutinized in public.
This past week, I was in L.A. visiting friends. We happened to get into a taping of The Jimmy Kimmel Live Show. Courteney Cox was a guest. She was absolutely stunning in person! I couldn't stop staring at her perfect legs! When I logged on Jimmy Kimmel's Facebook page afterwards, I was disgusted and horrified at what I read. Courteney's looks (and age) were ripped to shreds from head to toe. Granted, I think whatever filler she had put in her face was unnecessary and excessive, but can one blame her for getting a little desperate? I thought Heidi Montag was crazy for having the 10 plastic surgeries she had, but if you read any article about her online there's a multitude of biting criticisms about her looks to follow in the user comments section. I always though she was kinda cute! She has an elongated face and the popular slam was calling her a "horse face!" OUCH! I mean, I have an elongated face. Perhaps I've been called that on several occasion myself? How can those barbs not cut into anyone's soul? At least Heidi is in her 20's. Courteney is in her 40's and somehow, in today's society, anyone over a day past 35 is not only considered "old" but can't be "hot". What planet do we live on that this concept has not only become mainstream, but is OK? When did it become socially acceptable to evaluate anyone and everyone head to toe? 99.9% of us a imperfect, but we forget that when someone else comes onto the screen- or walks into a room. Women can be horrible and catty and we contribute greatly to our own demise. I wish there was a movement in which that kind of behavior is no longer tolerated or acceptable among our gender. I can dream, can't I? We seem to forget however, for ever criticism or insult you throw out about someone, two come back at you. We all do it. It usually starts with a "I'm sorry, but (fill in the blank about how one is aging, how big their butt looks or what is wrong with their face)...
I still think Courteney Cox is breathtaking. If I look even half as good as her at 46, I'd be very happy. I am going to try to be the best I can be. Perhaps if I go unnoticed, it could be a blessing. What is beauty anyways? Can anyone put their finger on the formula today?
Somehow, I dodged harsh criticism in those agencies (and sometimes I received positive feedback and callbacks). Perhaps I had already paid those dues. In the end, I was awkward looking at home, but apparently not awkward enough in New York. There are times I regret that I gave up on the modeling idea. I was encouraged to keep at it. Over the past few years, I wonder if I could have survived the harsh criticism any female receives if they have any notoriety. My weight has fluctuated at times and I am past 30. There are things I don't like about my face, but I could only imagine how it would be pointed out and repeatedly scrutinized in public.
This past week, I was in L.A. visiting friends. We happened to get into a taping of The Jimmy Kimmel Live Show. Courteney Cox was a guest. She was absolutely stunning in person! I couldn't stop staring at her perfect legs! When I logged on Jimmy Kimmel's Facebook page afterwards, I was disgusted and horrified at what I read. Courteney's looks (and age) were ripped to shreds from head to toe. Granted, I think whatever filler she had put in her face was unnecessary and excessive, but can one blame her for getting a little desperate? I thought Heidi Montag was crazy for having the 10 plastic surgeries she had, but if you read any article about her online there's a multitude of biting criticisms about her looks to follow in the user comments section. I always though she was kinda cute! She has an elongated face and the popular slam was calling her a "horse face!" OUCH! I mean, I have an elongated face. Perhaps I've been called that on several occasion myself? How can those barbs not cut into anyone's soul? At least Heidi is in her 20's. Courteney is in her 40's and somehow, in today's society, anyone over a day past 35 is not only considered "old" but can't be "hot". What planet do we live on that this concept has not only become mainstream, but is OK? When did it become socially acceptable to evaluate anyone and everyone head to toe? 99.9% of us a imperfect, but we forget that when someone else comes onto the screen- or walks into a room. Women can be horrible and catty and we contribute greatly to our own demise. I wish there was a movement in which that kind of behavior is no longer tolerated or acceptable among our gender. I can dream, can't I? We seem to forget however, for ever criticism or insult you throw out about someone, two come back at you. We all do it. It usually starts with a "I'm sorry, but (fill in the blank about how one is aging, how big their butt looks or what is wrong with their face)...
I still think Courteney Cox is breathtaking. If I look even half as good as her at 46, I'd be very happy. I am going to try to be the best I can be. Perhaps if I go unnoticed, it could be a blessing. What is beauty anyways? Can anyone put their finger on the formula today?
Monday, March 28, 2011
Aftermath
It's been a little over 5 weeks since my surgery. It's seems like it was a long time ago, yet I'm suspended in a dreamlike disbelief. For over a year, my heart surgery was my whole life. I had to plan, deal, have daily break-downs, have several medical tests, meet doctors and surgeons and get past the holidays. My Caringbridge site took up what little writing energy I had.
It's impossible to get back to normal. Life will never be the same and that's a good thing. I made it through something in which I could not foresee my survival. God was good and I'm blessed! Now, I will express my gratitude by how I live each day. With my body still healing, my mind is open to all the possibilities again. For the first time in my life, I can tell myself that I deserve good things and I deserve to be happy.
Besides the impending surgery, last year was difficult. My mom's health has been steadily going downhill and well as my step-father's. I could not continue grad school with my own health issues. My Aunt Ruth began losing her battle with her health and Alzheimer's. It's still a difficult time for my family and I know this year we will face more hard times. I hope my strength and all the blessings will persevere for all of us.
I am going to try to get back to writing. It's been a long time since I've been actively writing. I missed it! Hope I can write about all sorts of things on this blog now! Life goes on and guess what? I'm still standing!
It's impossible to get back to normal. Life will never be the same and that's a good thing. I made it through something in which I could not foresee my survival. God was good and I'm blessed! Now, I will express my gratitude by how I live each day. With my body still healing, my mind is open to all the possibilities again. For the first time in my life, I can tell myself that I deserve good things and I deserve to be happy.
Besides the impending surgery, last year was difficult. My mom's health has been steadily going downhill and well as my step-father's. I could not continue grad school with my own health issues. My Aunt Ruth began losing her battle with her health and Alzheimer's. It's still a difficult time for my family and I know this year we will face more hard times. I hope my strength and all the blessings will persevere for all of us.
I am going to try to get back to writing. It's been a long time since I've been actively writing. I missed it! Hope I can write about all sorts of things on this blog now! Life goes on and guess what? I'm still standing!
Friday, January 21, 2011
February 17 is quickly approaching!
I've set up a Caring Bridge Website for my surgery. It will be updated often throughout my surgery and recovery. Please go to http://www.caringbridge.org/visit/lenamorsch
You have to register for the Caring Bridge site (sorry) but I figured this is the best way to keep everyone posted. I hope to be writing more about things other than my health on my blog.
Thanks!
You have to register for the Caring Bridge site (sorry) but I figured this is the best way to keep everyone posted. I hope to be writing more about things other than my health on my blog.
Thanks!
Tuesday, October 26, 2010
The process
The past several months I've been going through a process. I didn't realize this was something that I needed. I simply thought I was losing my mind. It's been a rough year. Not only with facing surgery, but I feel this year and it's events have been a turning point in my life. I feel the need to make changes within myself and where I am at in life. Unfortunately finding myself has been put on hold. My mom isn't in the best of health and needs our assistance and it's very time consuming. I need to have the farm tended to, phone calls to make, to-do lists to write and work. There is so much to do and I can't think straight. I can't seem to discipline myself to be productive.
Some days, I just wanna lie down, sleep and forget every worry being hammered into my head. The world around me seems to be going crazy along with everyone in it. I'm extremely emotional and even more empathetic of those in pain. I used to get away with a few days of raging PMS in which I'd burst into tears upon hearing some sappy song on the radio or seeing something unoriginal and cheesy on TV. Now it's everyday that I experience these highs and lows. And no, I'm not bi-polar. I'm lucky to have found out that this is normal. It's not easy, but it's allowed.
My Aunt Lula used to say "it's always darkest before dawn" whenever someone in the family was having a hard time. She was right. I realize that when you are faced with such a surprise in life, you have to allow yourself this process otherwise you really will go crazy. I'm in for a fight that I plan to win. I can't deny that I ran from this fear since my last surgery. It has been one of my biggest nightmares- and I've ran face first into it! I've asked "why?" Whatever I feel, I'm going to allow myself to feel it. I'll eventually get past it. This is an essential part of this process. I'm thankful to my family and friends who have supported and welcomed my meltdowns. I'm thankful to my fellow CHD patients who have reassured me that I will be ok. They have been though this and because they are here, they are my greatest hope.
I also appreciate the little things that have come my way to calm me.
The other day, I visited my family cemetery on the edge of the farm Gina and I inherited. I sat on my Aunt Callie's grave, as I have many times before and asked her to watch over me. I cried, felt sorry for myself and told her I missed her (as I often do). When I got over my little meltdown, a family of deer came out of the woods and walked by me. They acknowledged my presence and although I made them a little nervous, they mingled around before passing back into the woods. The beautiful little family of deer passed through long enough to bring peace and comfort to me. I felt good about having a good cry and thanked God for sending them my way (and of course I asked him to keep them safe).
So, please forgive me if I seem like I'm on a permanent PMS roller-coaster lately. This process is what I need and when I get through it, I'm going to be even stronger. :)
Some days, I just wanna lie down, sleep and forget every worry being hammered into my head. The world around me seems to be going crazy along with everyone in it. I'm extremely emotional and even more empathetic of those in pain. I used to get away with a few days of raging PMS in which I'd burst into tears upon hearing some sappy song on the radio or seeing something unoriginal and cheesy on TV. Now it's everyday that I experience these highs and lows. And no, I'm not bi-polar. I'm lucky to have found out that this is normal. It's not easy, but it's allowed.
My Aunt Lula used to say "it's always darkest before dawn" whenever someone in the family was having a hard time. She was right. I realize that when you are faced with such a surprise in life, you have to allow yourself this process otherwise you really will go crazy. I'm in for a fight that I plan to win. I can't deny that I ran from this fear since my last surgery. It has been one of my biggest nightmares- and I've ran face first into it! I've asked "why?" Whatever I feel, I'm going to allow myself to feel it. I'll eventually get past it. This is an essential part of this process. I'm thankful to my family and friends who have supported and welcomed my meltdowns. I'm thankful to my fellow CHD patients who have reassured me that I will be ok. They have been though this and because they are here, they are my greatest hope.
I also appreciate the little things that have come my way to calm me.
The other day, I visited my family cemetery on the edge of the farm Gina and I inherited. I sat on my Aunt Callie's grave, as I have many times before and asked her to watch over me. I cried, felt sorry for myself and told her I missed her (as I often do). When I got over my little meltdown, a family of deer came out of the woods and walked by me. They acknowledged my presence and although I made them a little nervous, they mingled around before passing back into the woods. The beautiful little family of deer passed through long enough to bring peace and comfort to me. I felt good about having a good cry and thanked God for sending them my way (and of course I asked him to keep them safe).
So, please forgive me if I seem like I'm on a permanent PMS roller-coaster lately. This process is what I need and when I get through it, I'm going to be even stronger. :)
Monday, September 20, 2010
Normalcy
Last night I couldn't sleep. I was somewhat happy that I finally figured out how to program the TV in the bedroom so I could watch Roseanne while I fall asleep. My mind started drifting to my ever present worries and then it hit me: a panic attack! I almost got up and erased this blog! I started thinking about how every single detail of my heart condition is out there! I've tried to be normal my whole life and that's why I kept my health private. Then I started thinking about my friend Sarah who passed away 2 years ago after a heart transplant. For those of you who don't know the story, I met Sarah after she moved to southern Illinois with her husband from central Wisconsin. Fate brought us together. We were two girls who wanted to be writers, loved animals and both had heart defects. She even had the same cardiologist as me! I met her as she was getting listed on the transplant list. Four years later, she moved home after her husband declared that he wanted a divorce. She had a blog and wrote about what she was going through. I woke up many mornings with an e-mail from Sarah waiting for me and it always made my day. She had an enormous talent with words- whether she was presenting herself to a friend or the world. I still go to her page or read her e-mails on nights that I really miss her. God, she was the bravest soul I have ever met! Even though I have some big issues, she had far worse than I do. She pressed forward and her faith did not falter. I fear people who don't know me that well will mistake this as a ploy for sympathy, but that's not the case. I'm not exactly sure why I'm doing this, but I know that like Sarah, I should give those, like me, a voice in their struggles. Not many people think about Congenital Heart Disease or understand it. Now, I hope many will.
I decided today to try to get back to my normal routine- as much as possible. The surgeon's office called and set up a consultation appointment for the end of October, so I have that long to consider every question I will have for this man. Until then, I'm going to try to exercise daily, eat right and get my mind, body and spirit in the best shape possible. I know how to fight this fight, I only need to find the faith I once had. I am going to make the choice to believe that this problem (no matter how scary and disappointing it is right now) will turn into a blessing! Perhaps the reason I met Sarah in the last few years of her life was to find the strength that I would later need. She is the true inspiration for this blog, so I hope I don't really freak out and erase it. :)
I have to return to normalcy-the Lena version. This is just a bump in the road...
I have a dentist appointment tomorrow. Not that I ever dread a dentist appointment, but I am welcoming the change! Oh- and I have a hair appointment too! I don't think my hair will ever be normal, no matter how much I hope and pray for that!
I decided today to try to get back to my normal routine- as much as possible. The surgeon's office called and set up a consultation appointment for the end of October, so I have that long to consider every question I will have for this man. Until then, I'm going to try to exercise daily, eat right and get my mind, body and spirit in the best shape possible. I know how to fight this fight, I only need to find the faith I once had. I am going to make the choice to believe that this problem (no matter how scary and disappointing it is right now) will turn into a blessing! Perhaps the reason I met Sarah in the last few years of her life was to find the strength that I would later need. She is the true inspiration for this blog, so I hope I don't really freak out and erase it. :)
I have to return to normalcy-the Lena version. This is just a bump in the road...
I have a dentist appointment tomorrow. Not that I ever dread a dentist appointment, but I am welcoming the change! Oh- and I have a hair appointment too! I don't think my hair will ever be normal, no matter how much I hope and pray for that!
Saturday, September 18, 2010
One Day At a Time
Yesterday was a long day. I left home around 5:00 a.m. in order to have plenty of time to get to St. Louis for my cardiac cath check-in at 7:30. Matt drove me and was by my side all day. I was apprehensive about the procedure due to past experiences, but this one was much more tolerable! The procedure took around 2 hours and I was given some good medicine. The nurses were very cool and we joked around about vanity, class reunions, cats and God knows what else (or maybe I dreamed it). At one point, I heard Dr. Ludbrook suggesting that I be given more sedation. Perhaps I was blabbing too much, but I didn't feel much of anything until the end where the artery had to be sealed. That felt as if I was having a nail driven up my groin! Ouch! I had to stay in recovery most of the day to make sure the artery had clotted and I was OK to go home. I also had to wait for Dr. Ludbrook to go over all the data and photos he collected during the procedure. I'm very lucky to have such a reputable, experienced cardiologist that specializes in congenital heart disease.
I was hoping that he would come in and say things looked better and he didn't see any reason to consider anything, but deep down, I sorta knew he wouldn't.
My pulmonary valve needs replaced and I expected him to say as much. What I didn't expect is that he found my VSD patch that I received when I was 15 had torn loose. The patch was placed in my septum during the surgery to form a wall. The hole had been so large that I basically didn't have an inner structure to my heart.The patch had a small leak over the years, but it hadn't changed. Now, I'm walking around with about 1/3 of it loose and flapping around, thus the hole in the middle of my heart has returned. I also have scar tissue around my aorta that needs to be removed. This is all consequential of the defects and patch. Funny, but I don't feel that bad!
I asked a million questions and nervously laughed as if I was in disbelief. Matt looked like a pale puppy that had been kicked in the side. I feel really bad for him. I am sure he never expected all of this when we started dating. He has been such a prince during all of this!
Dr. Ludbrook wants me to see a surgeon and this is the next step. He welcomed me to a 2nd opinion and he told me I have the right to choose however I want to deal with this. The surgeon is chief of cardio-thoracic surgery at St. Louis Children's, where I had my 2 surgeries as a kid. Why am I seeing a pediatric surgeon you ask? Because they have the expertise in repairing congenital heart defects and this is who I need since a regular heart surgeon doesn't not have the experience in these defects. I don't think I can find better anywhere else.
I am overwhelmed at the moment. I have many things to research and consider. Do I wait until it gets worse (and Dr. Ludbrook said it would) or do I opt to have surgery sooner? If there was a guarantee that I would make it and be even better, then there wouldn't be a hesitation. But, there are risks. You think you'd know how you would handle this if it were you, but trust me, you don't. I'm scared and frustrated. I never expected this to be reality again. I have to wrap my mind around it. I'm lucky to have fellow CHD patients as a support system at this time. They have been a comfort and a inspiration.
I am heartbroken over the worry I am causing my family, friends and Matt. They feel helpless right now. They are used to me being take-charge, strong and in good shape. I want to be that person again. Life- and health is such a blessing! I am not invincible, but I'm hoping to find the inner-strength I once had. Wow, I have overcome a lot! I choose to believe this has happened for a reason and from this experience, I can share it and make a difference. I'm going to ask God to spare me once again. I have so many things I want to see and do. I pray that I live to be very, very old! :)
In time, I will make the best decision for me. Ultimately it's my battle. Until then, I am going to take it one day at a time.
Once again, I appreciate those of you who have taken the time to read my blog. I hope to write about more cheerful things in the future, but this is part of my life and I have to vent. Feel free to comment below!
I was hoping that he would come in and say things looked better and he didn't see any reason to consider anything, but deep down, I sorta knew he wouldn't.
My pulmonary valve needs replaced and I expected him to say as much. What I didn't expect is that he found my VSD patch that I received when I was 15 had torn loose. The patch was placed in my septum during the surgery to form a wall. The hole had been so large that I basically didn't have an inner structure to my heart.The patch had a small leak over the years, but it hadn't changed. Now, I'm walking around with about 1/3 of it loose and flapping around, thus the hole in the middle of my heart has returned. I also have scar tissue around my aorta that needs to be removed. This is all consequential of the defects and patch. Funny, but I don't feel that bad!
I asked a million questions and nervously laughed as if I was in disbelief. Matt looked like a pale puppy that had been kicked in the side. I feel really bad for him. I am sure he never expected all of this when we started dating. He has been such a prince during all of this!
Dr. Ludbrook wants me to see a surgeon and this is the next step. He welcomed me to a 2nd opinion and he told me I have the right to choose however I want to deal with this. The surgeon is chief of cardio-thoracic surgery at St. Louis Children's, where I had my 2 surgeries as a kid. Why am I seeing a pediatric surgeon you ask? Because they have the expertise in repairing congenital heart defects and this is who I need since a regular heart surgeon doesn't not have the experience in these defects. I don't think I can find better anywhere else.
I am overwhelmed at the moment. I have many things to research and consider. Do I wait until it gets worse (and Dr. Ludbrook said it would) or do I opt to have surgery sooner? If there was a guarantee that I would make it and be even better, then there wouldn't be a hesitation. But, there are risks. You think you'd know how you would handle this if it were you, but trust me, you don't. I'm scared and frustrated. I never expected this to be reality again. I have to wrap my mind around it. I'm lucky to have fellow CHD patients as a support system at this time. They have been a comfort and a inspiration.
I am heartbroken over the worry I am causing my family, friends and Matt. They feel helpless right now. They are used to me being take-charge, strong and in good shape. I want to be that person again. Life- and health is such a blessing! I am not invincible, but I'm hoping to find the inner-strength I once had. Wow, I have overcome a lot! I choose to believe this has happened for a reason and from this experience, I can share it and make a difference. I'm going to ask God to spare me once again. I have so many things I want to see and do. I pray that I live to be very, very old! :)
In time, I will make the best decision for me. Ultimately it's my battle. Until then, I am going to take it one day at a time.
Once again, I appreciate those of you who have taken the time to read my blog. I hope to write about more cheerful things in the future, but this is part of my life and I have to vent. Feel free to comment below!
Tuesday, September 14, 2010
I heart Autumn!
Tonight I drug out my Halloween decorations! Yay! I love Fall! The colors, the weather, the decor and Halloween! Here is a pic of my little girl, Penelope! She's getting into the festive Fall spirit too!
The heart of the matter (pun intended)
This coming Friday, I am having a test called a cardiac catherization at Barnes-Jewish Hospital in St. Louis. I can't recall how many I've had in the past, but I've been lucky to go over a decade without one. I hate this test! I swore I'd never have to feel the warm, nauseating sensation of that dye running through my veins again! It has been many years that I have felt like a heart patient. This past year, I found out that I am experiencing a condition that many adult survivors of congenital heart defects have, Pulmonary Valve Stenosis: a narrowing and leaking pulmonary valve. I'm not sure why I wasn't forewarned that I could endure this possibility. I'm pretty sure that Dr. Hartmann, my childhood cardiologist, truly believed this wouldn't occur with me. After my last surgery when I was 15, my defects were somewhat repaired. 5 years later, I was taken off all meds and I have done amazingly well. I've always known that I was blessed, but I also thought I was invincible.
I never imagined having a terrible cold this past winter was the beginning of dealing with this. I started grad school, but was barely able to drag myself to class and in class I felt like barfing or fainting many times. I went to my yearly appointment in St. Louis and as soon as Dr. Ludbrook listened to my heart, he detected the new leak over my loud ever-present murmur. I passed it off as an over-reaction or a ploy to have me to run a million tests that I usually talk myself out of. But after an echo-cardiogram, cardiac MRI and a VO2 Max test, the same results. Friday is the finale to see where I stand as far as treatment options. Will I face open-heart surgery again? Pulmonary valve replacement is a possibility in my future. While the surgeon patched up a huge hole in my heart called a Ventricular Septal Defect when I was 15 and grafted a section of my pulmonary artery, ect., it has still (like many patients with CHD) been enlarged and had to work harder. This wears your valves out. Who knew?
I've talked with my close friends about all of this over the past few months. It was devastating news to me. I'd come a long, long way since I was a blue kid. Some ignorant people who find out have said "oh medical science is so advanced, no problem!" or "my grandma had heart surgery, you'll be fine!" Well Eff you!!! That is an insensitive thing to say if you've never experienced heart surgery yourself. It SUCKS!!! Don't say things like that or you can have the surgery for me, 'k?
Something else that sucks is not knowing where I stand. I miss feeling like my old self. Sure, I've always had good days and bad. I always could work out, go to campus lake or a make a trip to the store that wouldn't make me have to go home and sleep for 2 hours afterwards. I didn't battle with 10 pounds of extra weight because I over-eat (from stress and boredom) and don't have the energy to work it off.
Until recently, I didn't want people to know I had a heart condition because it defined me when I was a little girl. I have to own this and like everything else in life, I just have to put it out there! I don't want sympathy, but I do want awareness and understanding about CHD. People have noted that I have changed and that they can tell something is going on with me. I see this as a calling. I want people to appreciate their bodies, health and energy. Regardless of what happens, I am going to get back to the old me.
I have talked to CHD survivors who have went through the same thing and they are doing very well. One guy even told me he plays Hockey! They give me hope and strength on days I feel sorry for myself.
So there it is.
I don't know who holds tomorrow, (as one of my favorite old gospel songs says) but I know who holds my hand. I'll deal with this like I always have. I may not like it, but that is life. I am nowhere near down for the count! I'm just waiting to see what I have to do and if it means a fight, then so be it! My name is Lena: I'm a proud survivor if Congenital Heart Disease!
Please keep me and my family in your thoughts and prayers on Friday.
I never imagined having a terrible cold this past winter was the beginning of dealing with this. I started grad school, but was barely able to drag myself to class and in class I felt like barfing or fainting many times. I went to my yearly appointment in St. Louis and as soon as Dr. Ludbrook listened to my heart, he detected the new leak over my loud ever-present murmur. I passed it off as an over-reaction or a ploy to have me to run a million tests that I usually talk myself out of. But after an echo-cardiogram, cardiac MRI and a VO2 Max test, the same results. Friday is the finale to see where I stand as far as treatment options. Will I face open-heart surgery again? Pulmonary valve replacement is a possibility in my future. While the surgeon patched up a huge hole in my heart called a Ventricular Septal Defect when I was 15 and grafted a section of my pulmonary artery, ect., it has still (like many patients with CHD) been enlarged and had to work harder. This wears your valves out. Who knew?
I've talked with my close friends about all of this over the past few months. It was devastating news to me. I'd come a long, long way since I was a blue kid. Some ignorant people who find out have said "oh medical science is so advanced, no problem!" or "my grandma had heart surgery, you'll be fine!" Well Eff you!!! That is an insensitive thing to say if you've never experienced heart surgery yourself. It SUCKS!!! Don't say things like that or you can have the surgery for me, 'k?
Something else that sucks is not knowing where I stand. I miss feeling like my old self. Sure, I've always had good days and bad. I always could work out, go to campus lake or a make a trip to the store that wouldn't make me have to go home and sleep for 2 hours afterwards. I didn't battle with 10 pounds of extra weight because I over-eat (from stress and boredom) and don't have the energy to work it off.
Until recently, I didn't want people to know I had a heart condition because it defined me when I was a little girl. I have to own this and like everything else in life, I just have to put it out there! I don't want sympathy, but I do want awareness and understanding about CHD. People have noted that I have changed and that they can tell something is going on with me. I see this as a calling. I want people to appreciate their bodies, health and energy. Regardless of what happens, I am going to get back to the old me.
I have talked to CHD survivors who have went through the same thing and they are doing very well. One guy even told me he plays Hockey! They give me hope and strength on days I feel sorry for myself.
So there it is.
I don't know who holds tomorrow, (as one of my favorite old gospel songs says) but I know who holds my hand. I'll deal with this like I always have. I may not like it, but that is life. I am nowhere near down for the count! I'm just waiting to see what I have to do and if it means a fight, then so be it! My name is Lena: I'm a proud survivor if Congenital Heart Disease!
Please keep me and my family in your thoughts and prayers on Friday.
Monday, September 13, 2010
The return to writing
It's been a long time since I have actively written anything. I have no idea how I developed writer's block- unless it was stress of real life. I decided to start a blog and try to be serious about it. Writing is very therapeutic for me. It's always been the fearless way that I can truly express myself. When I was little, I used to write letters to my parents when I couldn't come out with what I wanted to say. My mom called them my "poison pen letters". I have to admit, when I am fired up about something, there is no stopping me! Granted, I would love to be writing fiction, but as the saying goes: truth (my truth) is stranger than fiction. So, if you decide to read my blog, remember that I am being myself here. I try not to offend anyone, but I plan to speak my mind. This year has been eventful to say the least. I have a lot of things that I am dealing with that I plan to write about in the future. Sometimes I will feel like talking about silly and trivial things, but I am hoping you all can make a little sense of it. Welcome!!!
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