tag:blogger.com,1999:blog-59916358486346903792024-03-05T22:32:04.289-08:00Cajun TitaniumWe are three incredibly proud & fit mothers from south Louisiana. Each of us survived life-threatening events that almost killed us & certainly changed our lives. We all have titanium to show for it in our respective limbs, heart, and neck. We COULD give in to the hardship & pain, we could give up & be overwhelmed by tragedy, but we're NOT.
You want to know about resilience & grace in the face of danger & fear, check us out!Anonymoushttp://www.blogger.com/profile/03200696618595450273noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-5991635848634690379.post-59725934103499535122015-07-18T22:59:00.003-07:002015-07-18T22:59:33.556-07:00Cute Heart Warming Goodness of Cuteness<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/-C6qJkXisz8" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/03200696618595450273noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-2734011513524642232015-07-18T22:59:00.001-07:002015-07-18T22:59:33.400-07:00Cute Heart Warming Goodness of Cuteness<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/-C6qJkXisz8" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/03200696618595450273noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-69452331064801521842014-09-26T10:04:00.001-07:002014-09-26T11:09:22.805-07:00The difference between knowing Jesus and NO Jesus....I was reading a post this morning that my friend wrote about her day. Feeling like she's failing everything. Don't all of us feel like this sometimes? We as people, as mothers, as wives and husbands, as daughters and sons put these crazy expectations on ourselves. We need to get to the point when we accept ourselves for who we are. And who is are is good people, good mothers/fathers, good spouses. But comparison is evil. It's so easy to do. Walking down the street. "I wish I looked like her. She's so put together. I bet her kids left the house with ALL their teeth brushed. She probably eats all organic food and I bet her kid doesn't sing for an entire hour after bedtime off key like a deranged superhero running out of batteries." That must mean that you failed, right? No, it's just a lie we tell ourselves. No idea why. Because all of us are just trying our best. Yes, that's my son in the Batman shirt with the Superman cape and a sweatshirt. Yes, I'm aware it's not cold yet. Have you tried reasoning with a 4 year old? This is why I started the rule.. Don't argue with 4 year olds about things that don't matter. Yes, my daughter runs like Unicorn on her soccer team. (Yes, I'm aware unicorns are mythical but you come to her game and tell me she DOESN'T run like a unicorn.) Does that mean we always say the right things or do the right things? Not even close. I mess up all the time. Then I apologize and try my best to make up for whatever happened. My kitchen looks like a bomb exploded or we might have been robbed. But it's okay. I'll fix it. Later. I promise.<br />
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It's really easy to remember all the good stuff but forget all the bad it took to get you there. In 15 years of being with Jeremy it's so easy for me to remember all the good things that have happened. But further back in the recesses of my mind I barely remember the struggle. Like the time I cried on a complete stranger in an elevator because I found out I would have a really hard time with infertility. Right then it seems like nothing would be okay. But eventually I let go. Then I got two little miracles. I don't ever take them for granted. But sometimes when Mason yells "No Jesus (as soon as the doors of church open) I feel like I failed. Of course, one of my best friends insists he is actually yelling, "KNOW JESUS." So I nervously chuckle when he says is (I sometimes pretend he's not with me.) Just kidding. The kid has my eyes. He might have my fashion sense. So I'm scared. Obviously...<br />
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What you don't know is what's behind the outside view that you can see each of us is struggling. We're all trudging through the day. Sometimes it's easier than others. No one is perfect. Why do we make it so hard on ourselves? It's this impossible race we are running. So lately I've tried to slow things down. Focus on one day at a time and really embrace each second. I've also tried really hard not to compare myself to the "old" me. The one with 6 pack abs that ran 6 miles at 5am without any inkling of what would happen later. I decided to ramp up my workout schedule but not make it harder. I'm actually making it easier. Doesn't make sense you say? No, revolution usually doesn't. I wasn't happy at my gym. So I quit. Yes, me. I quit something. I switched gyms. I was totally shocked working out at the new gym. People actually talk to me. It's all kinds of awesome. So I'm changing everything.<br />
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Everyone is encouraging at the new gym. I feel like I can finally let go of the old me. Of the one that pushed until collapse. Because I wasn't helping myself or my family (who incidently do not care how many stairs I climbed or how hard I worked out. ) I found this out the hard way when I had to get reprogrammed two weeks ago.. My heart decided to beat both sides at once (because it's kind of a jerkface) and the new pacemaker wasn't outpacing it. So there I was, shelved again. Bawling. Devestated. Worried all of what I've worked on was gone. So I said the H word. I asked for HELP. My beautiful friend Elma stepped in. My husband came home from a work trip out of town. We set about reprogramming Usain Volt we promised never to overwork him again. ( A promise I can tell you now I'll probably break.) We were able to get it done but things aren't perfect. Show me a human being that doesn't have flaws. So I'm a robot with some glitches. I'm doing my best. And yes, that is good enough. Say it with me..... "I am good enough, I am smart enough, and gosh darnit people like me."<br />
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We all have a finite number of minutes in the day. Some days I get things done and I feel on top of it. Dinner is cooked and children are dressed, and bedtime is almost running on time. It feels like Heaven! Other days it feels like I'm running nonstop and forget I put my daughter GIANT BOW on my head and proceeed to run errands all day (and somebody's breakfast ends up being cereal in a cup (on the way to school) and I may or may no have remembered to wash my face and then I catch a glimpse in the mirror. And I think, "Whoa, I really need to get it together." I sometimes yell I'm having a terrible, awful, no good, very bad day and I sometimes threaten to move to Australia. Then I remember this picture I have of my mom when she was about my age. Her hair was messy and she didn't have on makeup. Of course now my mom always looks put together, with her hair and makeup fixed. Then I realize, this is just a stage. It's my yoga pants/ponytail/I'm carrying a cup of coffee with multiple children's bags hanging off me/Don't judge me I haven't lost ANY of my kids stage. Whew. I know I can write a run on sentence like nobody's business. Like all other stages I'll outgrow this one. Maybe. No promises. It's like Picasso's Blue Period, right? Almost...<br />
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But if you ask me would I want the Thursday night Varsity dance nights back in exchange for my current life? Hell no. Not for all the high heels in the world. Because nothing is better than my kids realizing I'm working so hard for them. So their homework gets done and they have food, no its not always a great meal. Sometimes it's okay to take shortcuts. We're all trying our best here. No awards for bravery. Just a kid who yells, "Mom, come wipe my butt." Nothing makes me laugh more than that. Because moms all over the world are fighting the struggle. Nothing brings me more happiness than seeing happy, fulfilled kids. No, I don't get it right all of time. Sometimes I'm scrambling all day. Sometimes I don't say the right things to my friends, to my husband, to my kids. But I'm trying my best. Trying not to compare myself between people and to the old me.<br />
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I was trying to make my kids realize how much I prayed for them when I was pregnant. So all week I've been listening to, "This Woman's World by Maxwell (Mason's song) and "Come to Jesus" by Mindy Smith (Ava's Song.) These are the songs I listened to when I was worried about my babies. So this week I am listening to them and I'm trying to remember. This too shall pass. And to everyone struggling right now. Trying their best.... Remember.<br />
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<tr><td class="tr-caption" style="text-align: center;"><i><b><span class="Apple-style-span" style="font-size: small;">Jenny</span></b></i></td></tr>
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-88988208917124729492014-08-02T18:13:00.002-07:002014-08-02T18:26:24.766-07:00Jenny- it's my birthday and today I painted my nails..<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">On our way to Dinner..</td></tr>
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Today is my 37th birthday. The end of my 36th year (and the year I've been terrified of going through.) Mostly because my brother died at 36 and it was a creepy thought that I was the same age as when he died. So today ends that period of my life. I finally got to paint my nails. You see, I haven't had them painted for a over a year because you need nail polish free nails in the hospital so weird people who wear lab coats can check your oxygen levels. :) So in my first act of my newfound freedom I painted my nails. It may seem little but to me this is the start of a new year and a new life. I have a story that I need to tell. But it isn't about me. It's about people you walk past everyday and their stories you don't know that aren't written on their face or in scars you can see.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mayo's Beautiful Stained Glass</td></tr>
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On July 17th the day started waiting in CV holding at Mayo, where everyone waits to get prepped for heart surgery. A happy, jovial guy about 42 years old (and looks like Tim McGraw) sat down a few seats from me. We struck up a conversation. He asked what I was having surgery on. He saw I had a wheelchair so he knew I was also a patient. So naturally I asked him why he was there (thinking maybe it was for a family member.) Sadly, I was wrong. I don't want to give away his real name so we'll call him Brian Smiles. Ever met someone so full of life that they glowed? That's him. Sitting in a chair with a baseball cap on and a smile on his face. I noticed after a while that he paused when he spoke (in a way that people do when they can't breathe.) I didn't notice it at first glance and I maybe wouldn't have noticed at all if I was distracted with my phone or a magazine.<br />
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Brian told me his story about how he got misdiagnosed and had a lung removed because they thought he had lung cancer. His doctor concluded (after the lab tests came back) that he did not have cancer. He had pulmonary fibrosis. Every 3 months Brian travels to Mayo to get an artery stretched out so he can fight to breathe. Brian needs a heart and double lung transplant. Which Brian thinks is selfish to get because he'd take organs that 3 people could have. (I get up from my chair and move closer so we aren't yelling across the room at each other.) This wasn't the conversation I expected today and he needed to talk to someone. I struggled to breathe getting up because I didn't have a pacemaker in yet. He said that I was worse than him so he couldn't complain. I told him I'd be fixed that day so go on and say anything you need to say (even in the midst of his suffering he was worried about me.) I was so struck with his composure. His willingness to share his story without fear or complaint. Just so matter of fact. Like you'd say your height or eye color. It was just part of his story, not all of him.<br />
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Brian is married and has 3 children. ( I silently wonder if his family truly knows how much he is suffering.) His positive attitude was infectious. Joking about the things that happen with his condition, trudging along anyway working nonstop as a physical therapist. His lung bleeds constantly. Not much more can be done until that day when Brian gets listed on the multi organ transplant list. He asks me what do you say when people ask, "If you are doing better because he's not being negative but he's not going to get better." I tell him that he's not being negative, he's being realistic and his family and friends can carry him along if he just tells them the truth.<br />
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A few hours later after I'm absorbed in this conversation of Brian's truth the doctors come and get us. With the shower curtain particians I don't realize at first Brian is being prepped next to me. I try to give him privacy and don't announce I am next to him. I'm waiting and praying for Brian, that he has a good recovery. His doctors are talking to him about complications. Then the curtain moves on the right side of me. Miss Lucy is telling her surgeons that it's okay if she dies, she has her burial plot all paid for. I shudder at the thought that this lady is so profoundly acceptant of her possibly death from heart surgery until she explains. "You see doctor, my son died when he was 9, he got hit by a car. I'm supposed to be here with my husband, but he died of cancer and I'm 78 and I'm ready to go to Heaven. The doctor pauses, shocked by what his patient is saying. He musters up the only words he has for her, " I'm going to do everything I can for you." She reassures him again it's okay if he can't do it she's ready to be in Heaven.<br />
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<tr><td class="tr-caption" style="text-align: center;">The Cross I prayed to at Mayo while waiting for surgery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Me and the wound vac that was used to help me after they found the staph infection</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Feeling blessed and humbled that I'm walking again from my new device</td></tr>
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<tr><td class="tr-caption" style="text-align: left;"><span class="Apple-style-span" style="font-size: small;">There I am sandwiched between these two people and humbled by their stories. So you see it was impossible to be upset about my situation. I was crying behind the curtain praying for them and feeling so selfish that I get a free ride. I get a "get out of jail free card" because I would be fixed with a new pacemaker. Later on the next day I was bouncing around the halls. Nurses laughing with me because I hadn't walked the halls at Mayo before. I was damn near sprinting now with my new device. (Jeremy aggravated at my refusal to sit down.) My nurse told me I was previously a "slug" patient not moving and now I had turned into a butterfly. Then I stopped in my tracks. Because I saw Brian. He was being wheeled to X-Ray and he was pale and sickly. I felt such tremendous guilt. Brian said, "Wow, you are already breathing perfectly. Just like that, huh?" I nodded and told him I was praying for him.</span><br />
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<span class="Apple-style-span" style="font-size: small;">At Mayo it's like an alternate universe where people of all nationalities and ages converge. Beautiful buildings and artwork so it doesn't feel so much like a hospital. All people/patients that are exceptional. People that have things you've never heard all coming together to see the best of the best doctors in the world. It's strange because Mayo does most tests outpatient. So you sleep in a hotel. I lived in the hotel for a month. Food was delivered. Housekeepers brought extra pillows. Injectable medications were delivered to my room. It's like the most supportive environment ever imagined. On my lowest day my friend Ashley came by with lunch and we talked for hours. That talk meant the world to me and made me normal in a hard situation. Isn't that what we are supposed to do? Uplift others and hear their stories? Even on my worst day there outside concerts were going on in Peace Plaza every night. So I'd crack the window and listen to the world outside that room and think of all the people there at Mayo for the same reason as me, hoping for a cure.</span></td></tr>
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People ask me all the time how to get through tough situations. My words are simple.<br />
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<span class="Apple-style-span" style="font-size: small;">Remember the outside world, no matter what situation you have going on in your own life. Put your phone down and have a conversation that doesn't involve a text message. Try your best not to take any moment for granted OR the ability to Walk, Speak, Think, See, Breathe, and Hear the World around You.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">After I got my miracle new pacemaker<br />
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<span class="Apple-style-span" style="font-size: small;">Thank you Mayo Clinic for reminding me that we are not cases but people, we each have a story and a voice that needs to be heard, a silent prayer we can say for our fellow man, and a helping hand we can extend to those around us. May God help us all to see the people that can helped by a kind word, or to recognize when we can connect to another living, breathing soul in our midst.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><i>Jenny</i></td></tr>
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Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-12822523607361973592014-06-15T05:53:00.000-07:002014-06-22T11:31:27.411-07:00Jenny-Delta.. Fixing Broken Hearts over the world!<span style="background-color: rgba(255, 255, 255, 0);">So our 11th wedding anniversary is coming up. I decided we should take an anniversary trip....To Maui? Hawaii? Greece? No, To a hospital silly...Um, yeah I kinda suck at vacations, and planning, and being places I promised to go...Not because I'm inconsiderate but because my heart is kind of jerkface.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">I've been randomly hugging the floor. Not because I enjoy looking crazy in public but because I'm going unconscious. A lot. It's happening at a crazy frequency. I sometimes know I'm going to faint. So I have about 30 seconds to get on the floor. Which is great because if you take me out the house you have about a 50% chance I'm going to faint on you. C'mon you kinda want to see that right?</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">There in Rochester, Minnesota in the middle of nowhere lies a magical fairy land. It's called the Mayo Clinic and I have the golden ticket. I'm going. Although its not a magical land as much as a place for the weirdest of the weird. For the hardest cases. I'm going to be evaluated. To see if they can figure out the pieces we have left and advise us how to proceed.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">So Monique and I have been talking a lot about being honest... This is the downside to wanting to be inspiring. Sometimes I'm not doing awesome and I really don't like admitting it. It feel like failure. Even though I can't do anything about it.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">My kids are unwilling participants in my journey. I wish their lives could continue on as normal without any changes. But that's just not realistic. We've done our best to continue on but it's been tough. Really tough.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">But the past 2 months have been hard. Very Hard. I collapsed at home in front of the kids 2 months ago. I was carried out my room by paramedics and an crew of fire fighters. I was unconscious and didn't even know the fire truck was at my house. My kids had a mixed reaction. They were kinda excited that firefighters were there but kinda terrified too. It's something I would wish on my worst enemy.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">Waiting is so hard. I've spent the past year with life flying by me at record speed. Until my surgeon decided I needed to go to Mayo. Time seems to stand still as we waited to start our trip to Mayo. Wednesday was the day I've been waiting for to leave for the Mayo Clinic. It was a long day. Getting through security and waiting to fly. We had a slight mechanical problem on on our first flight. The whole waiting area let out an audible groan. Out flight was delayed and most of us would miss our connecting flights. The passengers were tired, grumpy, and annoyed. Jeremy and I couldn't believe how some people treated the Delta staff. Yes, our plane was late, but they were trying to keep us safe and that's what matters most.</span><br />
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This year has been a year of triumphant success and failure. The children have grown so much, we bought a new house, Jeremy has traveled the world. I have been stuck at home. Unable to move very much. I haven't shared this with many people but I've been in the hospital every month for the entire year. I've been having problems with Bob Marley, my pacemaker. As I was sitting on the plane I was thinking that I just had to make it a little longer until we could land. I've been fainting constantly. I was joking to Jeremy that it was like traveling with the Weekend at Bernie's guy! He just needed to keep me conscious to get on the flight! So we took a wheelchair and prayed I'd make it.<br />
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Then Lindsey and Q, our flight attendants came bouncing over serving refreshments. We were chatting and they told us we probably wouldn't make our connecting. I mentioned we were going to Mayo to get my heart fixed. Suddenly, Lindsey and Q said they would be right back. Little did we know they went to speak with our pilot. Told them they had a girl with a broken heart on the plane. I can't even begin to share our shock at what happened next.<br />
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Our pilot called the pilot of the connecting flight and asked him to wait for me. I started crying. After this terribly long year these fabulous women took it upon themselves to make sure I made it here. At the end of the flight The pilot asked everyone to stay seated do we could get off first. I'm sure a lot if people were wondering who we were as I tried to exit the plane. But my pacemaker isn't handling me moving quickly. So I sounded like a suffocated wounded animal trying to make me way to the jetway and crashed into Lindsey at the front. Sorry Lindsey! I had tears in my eyes because I was so moved that ya'll did so much for us. I'll never forget you.<br />
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They had a wheelchair waiting and rushed us to the next flight. Walking onto the next plane felt triumphant. We made it. Through some miracle and loving assistance from Lindsey and Q we finally made it to Mayo. Thank you for caring about the broken heart girl and her hubby. I can't thank you both enough. We know you have a choice when you fly. Fly Delta, they are good people. If you run into Lindsey and Q give them a hug for me.<br />
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Our first day at Mayo they figured out the problem and told me I need surgery to get a new pacemaker. So we're doing tests right now and figuring out the best model pacemaker for me. I have a pacemaker now for older people. I need the "sporty spice" young people pacemaker. Turns out I move too quickly for this pacemaker and it's not helping me breathe. So I'm getting a new pacemaker with different sensors so it can sense me moving and help me breathe. I've never been so grateful for the ability to walk. I can see the end in sight. I'm almost to the finish line to get my new device.<br />
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Delta, thank you for starting to fix my broken heart. You cared enough to move mountains to get us here. Thank you so much!!!<br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Jenny</em></td></tr>
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com2tag:blogger.com,1999:blog-5991635848634690379.post-75805026727481333072014-05-20T10:21:00.001-07:002014-05-20T10:53:01.121-07:00Jenny-The 1%...and April Showers Bringing May Flowers<div style="text-align: left;">
When someone makes a decision I don't understand I try to remember that I don't know the full story. I can't judge them on their decision because I'm not them and not in their situation. All I have control of is how I react to situations. This is something that was really hard (and continues) to be hard for me and my family. Especially when others we love choose bad decisions.</div>
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Heart disease has ravaged my family. It shook us to the core. It altered the way we respond to situations, what we say to each other, how we plan for the future. But with April Showers Come May Flowers. I had to take this energy, these experiences, and grew something new with them. The ABILITY TO ADAPT in hard situations is what defines us as people. <br />
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If we all got exactly what we wanted 100% of the time what would we strive for? What would drive us?? So I don't believe it's God's responsibility to answer all of our prayers. Sometimes we learn more from our failures than our successes. But how you respond to the bad times is what shows your ability to adapt.<br />
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April is a rough month for our family. The third anniversary of my brother, Adam's death at 36 of heart disease. But April was also the month my parents got married 43 years ago. April is when I met my heart twin April, and had all my surgeries with her. So the month of April is good and bad. I still shudder when the phone at the house rings late. Everyone close to us knows I hate that ringing phone late at night. Wondering if the worst has happened. But it's been 3 years. I still replay "that night" in my head. The one when I got the call. When the cops were at my door at 3:30am. Finding out my brother's car had crashed on a remote highway and all the airbags deployed. Adam didn't pay for OnStar service but when an accident happens they deployed 911 anyway. I had to call my parents and tell them over the phone that Adam had died. Worst phone call I've ever made. But after all these years I now know death isn't the worst thing that can happen to a person. <br />
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So many things can kill a person's spirit. So many worse things than death. Which is what inspired me to make the most of what life had to offer. Regardless of what is going on. It's why I hug all my family and friends more than anyone could want to be hugged. Because nothing is promised. Everyone thought I was so brave to go through all the surgeries. I wasn't scared to have them. Not any of them. I was terrified NOT to have them. The day when the docs tell me they can't fix my heart anymore is going to be hardest day for me.<span id="goog_1807907188"></span><br />
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Not everyone understands my NEED to help heart patients. I do it because I have a weird subset of knowledge and I feel like it's my duty to help others on their journey. After a lot of reflection it might also be because I couldn't save Adam. The shocking statistic is 99% of all widowmaker heart attacks are fatal. 99% chance you will die. <br />
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One day before I got my pacemaker I met my friend Lisa who came to see me at the hospital. She extended a beautifully warm welcome to a perfect stranger. Standing in front of me was a person who survived a widowmaker heart attack. She was the 1%. And she was with me, by choice, taking time out her day to help me. To buff me up for the wild ride all us heart patients are on. I was so moved by meeting her and hearing her story I found it hard to compose myself.<br />
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So when I have the gift of getting to help someone on their journey it's really a blessing for ME. Because I can help them an offer some strength to them in their time of need. I can sometimes quiet their fears enough to talk them through intensely scary situations. People that don't have doctors as loving as mine. Doctors that SIT when they talk to you. Doctors that listen to them and care how they can continue with everyday life. Fear stops a lot of people from living. It's stops people from getting the medical checkups they desperately need. Because not everyone wants to know what is wrong. I humbly understand that we all process things differently. Some of us need to talk about it, some need to be quiet, all right choices. <br />
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I met with Dr. Ross Ruel a few weeks ago. Dr. Ruel was the surgeon who invented the revolutionary open heart surgery I had 18 months ago. He made a 3 inch incision under my breast and somehow went through my ribs (on the inside) and blocked the nerve that needed to be protected so Dr. Razavi could safely ablade the outside and inside of my heart without damaging the phrenic nerve. Dr. Ruel asked me if he negatively impacted my life. Because now I live with a pacemaker. The question totally fazed me. Because through his innovative thinking and joint approach with my superhero doc Dr. Medhi Razavi they gave me the chance to have a life. To run again. To chase my kids. To feel safe again. <b>Regardless of the challenges I intimately know the value of life. </b> The value of breathing. The value of being able to look your children in the eye. Of thanking the man you love for saving your life and staying though all the good and bad of my life. Of laughing with the friends who have stood by me, through every weirdo medical thing I've had all these years. <br />
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<tr><td class="tr-caption" style="text-align: center;">My incredible open heart scar. The tiny cross was from the chest tube to re-inflate my lung</td></tr>
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I AM SO BLESSED.<br />
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THANK YOU GOD FOR THE CHALLENGES SO I TRULY SEE THE GOOD IN LIFE<br />
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Thank you for continuing to supply me with more people to help so I can distract myself from my suffering and focus on the needs of others. Thank you for the support of all of those around us in our "tribe." Thank you God for supplying me with people that can use the information I have learned.<br />
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I AM SO BLESSED. <br />
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I said the last part twice because sometimes people think I am unlucky. That word doesn't descibe me at all. Few people get to experience the amount of love I've been shown. Few people get the opportunity to be fixed by world class surgeons.<br />
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To blessed to stress about challenges that still exist. We have to roll with life. We have to see the positive in EVERY situation. No matter how small, how insignificant at the time. Find something to hold onto. If a loved one died, try to remember that they aren't hurting anymore. They aren't suffering.<br />
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April Showers bring May flowers...<br />
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<tr><td class="tr-caption" style="text-align: center;"><i><b>Jenny</b></i></td></tr>
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-31867326558297681842014-03-07T07:50:00.000-08:002014-03-07T07:50:02.915-08:00Friendships (by Monique)I have mentioned that I don't write enough for this blog. That is true! The biggest reason I guess is defining what I'm going to write for this one, and what I'm going to write for my personal one. I think I figured it out this week through a conversation with Jenny.<br />
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We were talking this week about living our lives, and how we have to rely on each other instead of the rest of the world. The three of us have been through some pretty horrific shit, but what we have in common is that we want to be defined by our own terms and not by the things that happened to us. We're not crazy, not stupid, not dumb or ignorant. We take responsibility for our own recoveries, and that means we are going to know our limitations better than anyone else.<br />
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This scares the general public sometimes. People really like us and want to protect us from ourselves. While the three of us are very much social butterflies, we are going to push ourselves to the limit of what we can do whether you like it or not. This doesn't mean we're going to overdo it or be unreasonable. This means that we're going to continue to challenge ourselves to be the best we can be.<br />
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<i>And it has worked for us</i>. Maybe this is the part that people don't understand. Doctors told Amy she wouldn't be able to bend her knee again. If Amy didn't take charge of her own life, she wouldn't be running now. It's not that the doctors were stupid, it's just that she knows her injuries better than even they do. She didn't overdo it, she just learned her injury so well that she persisted until she overcame it. She still has problems with her arm - I'm not saying that Everything can be healed, but she has done better than anyone thought possible because she took control.<br />
Jenny's still in the gym. I'm walking, and am continuing to regain more than anyone thought possible.<br />
I'm not kidding, we ALL are doing more than anyone thought possible. Not because we're miracles, but because we stay focused on what's important.<br />
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But I gotta tell you, when I'm unsure about things, be it my injury or my life, I turn to these girls. They trust me completely that I know my life and am doing the best I can. They'll let me know if something I'm doing is dumb and I trust that. But they don't arbitrarily tell me I can't do things or that I'm pushing too hard. And that's what Jenny and I were talking about. We rarely need feedback from anyone, but when we do, we can trust each other to believe in ourselves instead of others who sometimes react in their own fear for us. Heck I'm actually in a crazy whirlwind of emotions right now and not sure what path to take or who I can really trust, if things are really believable, but just talking to Jenny grounds me enough to remember I can trust myself. Life isn't always straightforward with a clear path but I'd rather live it than wait around to die. My choices may not always be the safest, but they're always what's best for me. If I need to talk something out to understand it better, I do it with these girls because I know they're not going to limit me or tell me to stop. They'll help me figure it out in my head to continue making the best choices I can make for me.<br />
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So that's what this blog is going to be about for me - the people in my life that have helped me not by being controlling, but by being a good resource.Anonymoushttp://www.blogger.com/profile/03200696618595450273noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-33548928651787047922014-02-26T08:19:00.003-08:002014-02-27T07:53:34.583-08:00Fundamental truths...and talking to strangers....<b>This fundamental truth has been rattling around my head all week...</b><br />
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<i>Only two types of people exist...Those who run towards a fire and those who run away from a fire.</i> When you think about it you can judge for yourself which group you fit into. Friends who stay during the hardest times in your life and those who can't handle the truth and disappear.<br />
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As a society we are taught to run from trouble. Run from bad situations. Don't speak up or get involved. But it that really what we should be doing? Of course, I'm not saying you should interject yourself in dangerous situations. But if you run into someone who could be helped if you just opened your mouth and talked to them would you do it? Or would you keep walking? In college most of us were willing to be open, to talk to new people and hear new ideas. I bet if you think about it you can remember just such an encounter with maybe a person who changed your life and you may have never known that person's name. But somewhere along the way we teach ourselves to stop talking to strangers. To keep to ourselves.<br />
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I was once by myself in the medical center. It was 8 years ago. I was by myself and crying. Not just a little bit. Uncontrollably sobbing because I had just found out I tested positive for the cystic fibrosis gene. Jeremy was going to be tested but we'd have to wait weeks for the results and if he was positive too the doctor said he would not help me get pregnant. As a heart patient with a laundry list of issues dangerous for pregnancy this one little bit of info was just too much. I thought after that the doctor would not help us start our dream of having children. It was just too much and I couldn't keep it in. After all these years you'd think this wouldn't have been a breaking point for me. As I cried, trying to get to my car I was approached by a few people who chose to get involved. Who offered a shoulder for me to cry on. People who ran towards the fire. What a gift those people were to me that day. When I was alone, without my husband and no time to process what this new piece of information would mean. <br />
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I wrote to Miss Lena this week. My guardian angel who sat with me after open heart when I was alone and crying. She was in the ICU with her husband and came and sat with me as I cried, chest tube in my chest cavity and all. She held my hand and prayed with me. I write her all the time. Because she is a gift. Without pretense or prejudice, she took a strangers hand and prayed for me. She ran to the fire.<br />
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When I was 18, I was working on a thesis project for a class I was taking. We were supposed to find a problem we could solve. So I decided on using Music therapy to bring joy to residents in an elderly total care facility. One lady never spoke. Ever. I never heard her utter a word (neither had anyone who worked there.) But playing music on a piano for her made her come alive. She sang. A voice came from the corner or the room that I didn't recognize. I couldn't believe it. One simple thing, music brought joy and happiness to a group of forgotten people. It was life changing day for me. What we do (and don't do) matters.<br />
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At the same facility I met a boy. He was 18 years old and had been badly burned in a house fire in Mexico. He did not speak English and was living in a rehab facility/nursing home with all people over 65 years old. His limbs had been burned off and he was the happiest person, the most grateful person I've ever met. His name was Gabriel. I named my son after him. I only met him for a few minutes. But his joy and his truth radiated within me and stayed with me. So much so that I told Jeremy I must name a son after this boy. To always remember in the face of struggle you can rise from the ashes.<br />
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I was at a meeting last night where my doctor spoke to our WomenHeart support group. He was surprised to see a patient of his who met me because of an article I wrote. He remarked that through writing we are all connected even closer. Maybe 1 or 2 degrees of seperation. All of us have the ability to connect. But you have to decide if you want to avail yourself to do the job. To connect others. To bring answers and ask thought provoking questions.<br />
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As I get older I want more meaningful, honest, relationships in my life. Honesty does not mean being unkind. Communication is key and how you say something, how your deliver the message is very important. I don't have time for drama, and superficial people in my life. Because when you get down to it I want people with my family that I can fully trust that I can learn from (and those who can learn for me.) One thing all human beings want is to be understood, to be heard. So ask yourself if the people you surround yourself with truly listen to you. Do they avoid all the 'bad stuff" or are they willing to be with you for all of it?<br />
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Monique (my fellow blog writer) and I were talking this week about honesty. About using our blog to not our post of successes but our failures too. All of us are struggling with something whether it be medical, or with a relationship, or death. Wouldn't the world be a better place if we asked our friends one simple question?<br />
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Are you happy? If I haven't seen you in awhile it's one of the first questions I'm going to ask you. I think happiness and joy are so important. That doesn't mean each of us doesn't have a struggle or internal conflict of some sort to work out. It just means that each of us is on a journey. Aren't we all trying to get better in some form or fashion? Children share so willingly. Without prejudice or pretense children meet and talk to people without caring about the superficial things we notice as adults. It's such a gift. But as a community we are getting more and more focused on not talking to strangers. Not reaching out. Not getting involved.<br />
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So ask yourself if you are a good friend? Are you trying to improve the lives of those around you? Are you giving back to your family? Are you giving back to your community, to your world? Because what we say is so important. The words we use can build up someone or destroy them. So we must choose carefully. Our time on this Earth is precious. None of us knows when our last day will be here. So we must make every interaction count. We must take it upon ourselves to make a impact.<br />
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People ask me all the time why I spend my free time helping heart patients. The reason is simple. I can help them by providing information. Helping them figure out which questions to ask their doctors. I can talk to people in other countries and let them know about medical advancements here. Do I "have" to do it? I guess not but I want to. It's an amazing thing to connect to someone who understands where you are coming from, who feels their pain. People did it for me and now I can share what I have learned.<br />
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So ignore all the things you have heard about "not getting involved" in certain situations. Go towards the fire, and find someone who needs the answers only you possess. Make your life have a impact. We we all be richer for it.<br />
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: 19px; font-weight: bold;"><i>Jenny </i></span></td></tr>
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com1tag:blogger.com,1999:blog-5991635848634690379.post-44766202955945215192013-12-17T12:01:00.002-08:002013-12-18T06:49:23.505-08:00Jenny-Adventures with becoming mute...I have a history of really rare heart condition called Inappropriate Sinus Tachycardia and this week I was diagnosed with a neurological condition called Spasmodic Dysphonia. So I guess that makes me both a spaz and inappropriately tachy. Ha Ha. I was pretty resistant to going to the hospital but by the time I made it to the Cardiologist I knew I had to be admitted. I was so tired I tried to sleep on Dr. Farmer's table which seems totally logical at the time. I am super stubborn and I was convinced I could walk downstairs but I couldn't. I didn't have the energy and my heart was too fast.<br />
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I had a slight cold that I got from my kids. I kept thinking that it was nothing but inside I knew it was so much more than just a cold. I couldn't breathe, my airway was closing, and I lost the ability to speak, then my heart went nuts. I had 10 surgeries so I would not be tachycardic and here I was back to being tachycardic and I was mute. Great. Jeremy had to pickup Ava from school so he had to drop me off mute at the hospital to check myself into the hospital. It was not a good day! Mute, waiting to check in and my paperwork wasn't in the system yet. But I couldn't discuss it with anyone because I was mute. Jeremy felt awful about having to leave me there but I needed him to go get Ava. I had to wait 2 hours for the direct admit paperwork but I eventually got a room. It also happened to be the same exact room I was in 5 weeks before which was weird!<br />
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So this is vicious cycle and it seemed so cruel to steal my voice from me again. I spent a week in the hospital. The docs were content with letting me hang out for another week. It was a very frustrating time because I couldn't speak when my airway was clamping down and you have to stay calm, while silently trying to communicate and it feels like you will stop breathing. It feels like someone is choking me with their hands around my throat. At the same time I have no ability to communicate. It's the way I imagine people with strokes feel because they know what they want to say in their head but cannot communicate. I've had a vocal cord problem for 5 years off and on. I haven't spoken (irony) about it much. I'm not sure why exactly. I always hope it's gone for good then it comes back at the most inopportune moments.. But today I decided to share this part of my story too.<br />
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Many people don't know that I was completely mute when I started on Facebook 5 years ago. I had just gotten off a breathing machine and had no way to communicate other than writing. So I got on Facebook and starting communicating. It was incredibly liberating to be able to "speak" to people and still feel like a useful person. But it was a long process to regain the ability to speak. I actually had to go through speech rehab to relearn how to talk because the muscles in my throat do the opposite thing they are supposed to do when I speak. It's a complication from asthma and severe reflux. I can only control it through controlling triggers. Of course, it's incredibly strange and just adds to my weirdness!<br />
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When I have a voice it sounds like this when the vocal cord is spasming so much I find it hard to breathe or eat. I sound very robotic. I cannot speak at a different speed or volume and I cannot say anything faster than this. It's extremely frustrating. On top of it sounding very strange people often think I have some sort of brain injury or I'm mentally incapable of understanding them. So I often choose not to even try to speak. I just write a lot of notes. I couldn't even order my own lunch in the hospital because I didn't have a voice that anyone could hear. I couldn't tell my kids goodnight! But I facetimed the kids and waved a lot! Makes you appreciate your voice.<br />
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So last week each time my throat would clamp down I would make it out to the hallway to wave down my nurse and write what I needed on a piece of paper. It's very lonely not being able to speak because I am such an extroverted person. But I find ways to still communicate. I can still dance, and move, and write. My cousin Steffanie came to visit me. She heard my weirdo voice and very seriously said, "At least you aren't chain farting or something." I laughed so hard I couldn't move. So there's always that. I'm mute, but I'm not, in fact chain farting. Love you cousin!<br />
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I got admitted from my cardiologist's office. He said I couldn't go home and that I was too sick. So I spent an entire week staring at the four white walls of St. Luke's trying to figure out what to do next. I could have just sat there and watched TV. But I wanted to go home. No one would let me go home until I could control my heart rate. But no one seemed to know what to do. <br />
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I was unable to speak so I decided to figure out if I could find a pattern with my throat clamping down. I needed to be able to tell the ENT the series of what was happening. So I decided to conduct an experiment. I walked in the hallway with my telemetry monitors on and found out I was walking with a heartrate of 119-127 before dinner. Then I ate dinner. Walked again. Immediately I was out of breath and feeling my throat clamp down. Alarms went off, nurses chased me down the hallway. I turned around assuming they were chasing someone else but then I saw the light on my door blinking. The odd moment when I realized yes, they were indeed chasing me and finding out my heart was over 144 just walking. Well, crap. What the hell is this now? Is it my heart, Is it my lungs?<br />
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Everyone was quick to blame the pacemaker, including me. But it wasn't the pacemaker. It was my throat constricting. Which made my pacemaker think I was running full speed when I wasn't! Eating was causing the problem. So I took a muscle relaxer and went to sleep. Then I walked again, my heart was slower and my throat was open. I let the docs know my findings the next day. They said my experiments proved the problem and that I needed to get to the ENT Center immediately to begin treatment. So just like that I got released. Because I fought for myself. Because I figured out what the problem was. Be your own advocate.<br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">So I arrived at the ENT office basically unable to speak. They wanted to know certain details, like my birthday. Normal things to ask but imposssible when you have a neurologic speech disorder. Numbers are impossible for me to say. You don't realized how much you depend on your voice until you don't have one anymore. It's embarrassing when I go out and my voice is not my voice. It sounds like a different person speaking, a robot. Even if the speech office I was the lone weirdo unable to communicate. It was humbling. I wonder sometimes if God just wanted to see how I'll respond so he just throws things at me.<br />I had written out what I needed to tell the doctor since I couldn't communicate. He read my experiments and hooked up a camera to look at my vocal cords as I attempted to say numbers. He said he knew exactly what this was, it is a vocal cord disorder called spasmodic dysphonia. I also have severe<span class="Apple-style-span" style="line-height: 16px;"> largngpharyngeal reflux which is a complication from asthma. It's destroying my vocal cords. So I stopped eating. I went on a liquid diet. </span></span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="line-height: 16px;">I'll be on a liquid diet through Christmas. I feel like it's a scene in Vegas Vacation when I eat dinner,"Gimme some of the blue, and that other "stuff". Ha Ha. I made a ton of different soups and smoothies. But it's working. My throat is starting to calm down and beginning to heal. Some days I sound kind of normal. But I didn't realized how much voice inflections matter. Without them everything sounds like a question. So when you call me I sound like I'm saying "Hi?", like I'm not sure if I saying hi which is confusing for people! </span><span class="Apple-style-span" style="line-height: 16px;"> </span></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="line-height: 16px;">My voice is slightly improving but it's a long process. So I sound like this most days (after I've taken all the medications.) I'm trying to remain positive and I hope to regain my normal voice soon. Until then I'm kinda trapped at home resting. I'm watching a lot of tv and trying to sit still which is very hard for me to do!! I've been cooking all sorts of things, then pureeing the hell of them. :) </span></span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="line-height: 16px;">I'm trying to be a good sport but this has cancelled our Christmas plans. We cannot travel until I am well and this has been very disappointing to all of us. I tried so hard to make it for Christmas. I even shipped all our presents ahead of time this year. Only to have to ask Jeremy's family to ship them back for me. We'll have a nice Christmas at home. We have everything we need. It's just hard when life throws you a curveball. Of course, I remember that so many people suffer with one thing or another. Whether it be medical problems or financial ones. We all need to support each other on this journey we call life. </span></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="line-height: 15px;"><br /></span><span class="Apple-style-span" style="line-height: 16px;">So how do you handle crappy situations? You remind yourself of all the things you have in life. You be grateful for all the "small" things, like walking, talking, and kissing your kids goodnight. So don't stress over not getting the "right" presents or if you haven't sent out Christmas cards yet. In the end it doesn't really matter. We have each other, we all more love than can be contained in this house, and we have skype to visit friends and family. </span></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="line-height: 16px;">Remember this year that not everyone has family around, or maybe they are going through a divorce or a death in their family. Reach out to support others. Even when they don't ask for it. God Bless and </span></span><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif; line-height: 15px;">Merry Christmas. Sing some Christmas Carols for me. I'll be singing them in my head for now.</span><br />
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<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I did in fact get our first Santa picture taken!!! Yeah for progress!</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnUjgZjiXdeX8ct3uP6STSFp2K3yecGXEmaS2GOA4Nm4Mp4ZM5P9x8zZviNNlx1v87yy3V-H__NoXQCNQGP0q6Cm2MGvxvs1zAhuCLasf23ATQy0roTgeWTgGHkE94eqIYVbp9v4_b/s1600/IMG_1756.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnUjgZjiXdeX8ct3uP6STSFp2K3yecGXEmaS2GOA4Nm4Mp4ZM5P9x8zZviNNlx1v87yy3V-H__NoXQCNQGP0q6Cm2MGvxvs1zAhuCLasf23ATQy0roTgeWTgGHkE94eqIYVbp9v4_b/s320/IMG_1756.JPG" width="320" /></a></div>
<span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span>Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com2tag:blogger.com,1999:blog-5991635848634690379.post-83521239130578688692013-10-30T09:52:00.000-07:002013-10-30T13:34:39.060-07:00Jenny-When the heart breaks it don't break even...Dedicated to Dr. Mehdi Razavi<div class="separator" style="clear: both; text-align: center;">
<u>My celebration of being one year post open heart. This post is dedicated to Dr. Mehdi Razavi.</u></div>
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<tr><td class="tr-caption" style="text-align: center;"><b>Dr. Mehdi Razavi</b></td></tr>
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Play this while you read please.... Because I like to be more be more complicated than necessary. :)</div>
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<a href="http://www.youtube.com/watch?v=Fsk3irwOjSk">http://www.youtube.com/watch?v=Fsk3irwOjSk</a><br />
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Because (when the hearts breaks it don't break even) is kinda my life story.....Do you ever walk past someone and wonder what their life is like, what challenges they face? I wonder if people appreciate their lives and what each of us have been given. When I hear people complain I think, do they know what they have? Do they value their life, their ability to breathe, to have a working heart? My wish is that all of us love more, spread joy, that we support each other as people, as parents, and as a nation.<br />
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I have so much to celebrate! WHOOOOO HOOOO! A YEAR SINCE MY OPEN HEART!<br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span class="Apple-style-span" style="font-size: small;">Ava and Mason at her 7th birthday party. I MISSED her birthday last year.</span></b></td></tr>
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Wow, time flies. A year ago I had open heart surgery and I was so ill I couldn't walk to the surgery holding area. It was in those last quiet moments with Jeremy not knowing if I would wake up after open heart. What do you even say to the person who has loved you and you have been with for 14 years? I was praying by some miracle I would see my kids grow up. I was hoping I would survive. Instead, I walked 2 miles in the Cardiac unit <b>2 days</b> after open heart. I had a new lease on life. Gosh, my expectations were blown away. Not only can I walk one year later, I can run again. What you didn't know was that I worked so hard after the surgery because one of my best friends, Monique (and fellow blog writer) had been hit by a car while training for a marathon and had a broken neck in the ICU and I wanted to get back to her in Louisiana, and to get back to my little family in Texas. So I was properly motivated to fight!<br />
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I have spent the past year meeting fantastic people who are true survivors, who motivate me to keep...doing...more. I'm in the process of training to become a volunteer for WomenHeart, our local heart support organization. We meet with heart patients and their families and support them on their journeys. To be healthy and to help other people is a dream fulfilled for me. In the meantime, I'm staying very busy helping patients all over the world, online. <br />
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I know nothing in life is a given. I cry every time after I get my kids home after each surgery. I love to listen to them laugh. To hear their feet running upstairs with them never knowing what we went through to get them safely with a heart patient mom. Everything seems so much sweeter now. I can even sing again, because have enough air in my lungs that I have a voice again. Truly remarkable year. I choose not to focus on the challenges we have faced this year, but to celebrate our future as a family. We are amazingly blessed. Exceedingly lucky.<br />
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I've had some setbacks too. Mostly because I'm still working on learning my limits. Because I feel so much better than I have in years that I forget to stop. Contrary to popular belief, I know I am not Wonder Woman. But I'm still young and want to live the fullest, most beautiful life that I can. I want to run more 5K's and spend the rest of my life appreciating (and using) my rebuilt heart. It's a well known thing that heart patients go through so much emotional turmoil with these surgeries. We know the future is not promised. So we enjoy life a little bit more, we love a little harder, and we celebrate our victories no matter how small. Because these stairs, they are mine now!<br />
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: small;"><b>We all have our challenges, this one is mine!! Being able to climb the stairs!</b></span></td></tr>
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I started last week unsure of what would happen, or what my future was going to hold. I spent 3 days in the hospital unsure I'd be able to climb these when I got home. It might seem little to some people but these stairs WERE something that was extremely difficult for me. (Kind of a symbol of success for me.) I got my pacemaker fixed last week and now these stairs are easy again! When faced with challenges I always try to focus on the good things all of us have been given. No matter, what the situation I encourage all of you to find SOMETHING good to focus on. Something to celebrate. <br />
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Adults never notice ladybugs because we're too busy looking up. Children appreciate all the little things we walk past everyday. Kiss your children more often, tell them just how amazing they are, because we only get ONE life. So forgive me for being sappy. I'm just so damn happy.<br />
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I'm made it through this year actually passing EKG's for the first time in my life, I can play soccer with my kids, I can be a dependable mom and wife because of this man. I am in such shock that he was even willing to treat me, much less get me to this point in a year. I showed up at his office because another doctor didn't have any idea how to fix me. I am going to be here for birthdays, holidays, vacations. I'll be able to see my children start families of their own one day. Something unfathomable for me to imagine last year when I was so tired I could no longer walk, or speak most of the time.<br />
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This extraordinary doctor below took me on (even though my case was extremely difficult.) He was the ONLY Cardiologist I have ever seen that said he could fix me. He knew the things I didn't say, he saw the frustration in my face, he saw that if given the chance I could have an amazing future. This is Dr. Mehdi Razavi, my Electro Physiology/Superhero Cardiologist doc and the man challenged with my crazy heart. Thank you for taking me on and seeing a future for me that I could not imagine. Thank you for giving me more time with my family and for always being there when I need your help. Because no one thinks the way you do. You are stuck with me forever. Congratulations!<br />
<br /><br />A year of healing, a year of gratefulness, a year of seeing my children grow, of appreciating every breath. Thank you Dr. Razavi for saving my life. I was born with a heart I could not use and you built me a heart that couldn't be stopped. Every good thing I do for the world or every great experience I will every have is BECAUSE OF YOU. Because you cared enough to do the impossible. Thank you for never giving up on me. Impossible for me to thank you enough. Yes, I stole your picture from the internet. :)<br /><br /><br /><br /> Thank you for fixing my whole heart because when it breaks it doesn't break even.<span class="Apple-style-span" style="background-color: white; font-size: small; font-weight: normal;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span>
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<tr><td class="tr-caption" style="text-align: center;">Jenny</td></tr>
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com1tag:blogger.com,1999:blog-5991635848634690379.post-87814920547175915502013-10-07T09:38:00.000-07:002013-10-07T09:43:38.992-07:00Jenny-Setbacks are part of life...We all deal with them, the setbacks of life. You try and do everything you can to move forward but sometimes life gets in the way. We had a major setback and I had to leave Mason with my parents longer than I expected to. He was gone for 2 months this time. Which is incredibly hard on him (and us.) We have him home now which has been great. It's been so much fun to see the kids reactions to the new house and getting their new playroom set up. We're finally settled in. It's a brand new start for us. Mason is scared I'm going to leave him again and I can't promise that I won't. All I can do is try to focus on what I can change which is my attitude.<br />
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We got back our little prince who changed so much in 2 months! Mom and dad have been working hard on his speech. He's telling jokes, being playful, and basically running the house! It's been delightful to see his little face again, and hear his contagious laugh. To see Ava and Mason running through the house together has been amazing. Such a blissful thing to see both of your children together, so happy to be with each other again. I caught Ava putting away Mason's clothes for me this weekend! So lucky I have such sweet kids! So happy our Mason is finally home. I can't say how nice it is to have everyone back together!<br />
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Last Monday we moved into the house, which has been awesome. Really hard to fight with myself not to carry boxes, but I managed to unpack the house, slowly, piece by piece. I also had to get reprogrammed last week. I had to make a tough choice, either be able to workout easily, or laugh. I chose laughing. It's a problem with the sensitivity of the pacemaker. I can choose to have it speed up my heart very quickly or very slowly. I can choose to have it be very sensitive or respond slower. It's a hard decision. Because I get benefits and downsides to each option. I actually have to physically tap on my pacemaker to get it to click on faster at certain times. Which looks pretty ridiculous I must admit. I feel like I have a Reebok, pump button inserted in my chest! Ever feel like you just can't win sometimes? I was having a bad week with my heart then I walked to get Ava from school. It started pouring. Like Monsoon level, flash flooding, sideways, freezing rain. I just had to ask, "Really God, this week is just going to be like this huh?" Sometimes you have to laugh through the rain.<br />
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It seems because we moved the location of the leads after I ripped them that the heart is conducting the electricity differently. It's just not as easy to program this time. I had 6 blissful months of a heart that actually worked without having to think about it. I have to think about it now, how to move without setting off something. It hasn't been easy I'll admit. I'll eventually get the settings just right but this is the part of heart disease people don't talk about. Some of us don't get a free ride. But I get a chance to live, and I left a lot of people behind who didn't survive. So I feel so guilty complaining at all.<br />
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Be grateful that you wake up everyday with the ability to breathe on your own, with a beating heart, and you don't have to calculate all your actions. I'm always running through them. Trying to figure out how to get to my intended goal and look normal/be able to breathe. But when running up stairs is exhausting and causes you to breathe very loudly it's hard to cover up. It's heartbreaking. I'm usually pretty tough but this week has gotten to me. I had 10 surgeries to be normal and I'm not quite there yet. I might not ever be. But something I did get back was my ability to sing. I didn't have enough oxygen the past few years to be able to sing. I can now which has been amazing. I didn't take it for granted. We finally found a church that feels like home and I can sing again. Just over a year ago I couldn't even stand during Mass because I was too weak. I'm strong now and so grateful.<br />
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I get to raise my kids and see them have great new experiences in life. We'll deal with the rest. But right now, today, I'm not where I want to be. Setbacks are part of life, not matter who you are or where you come from. All we can do is focus on the positive and try to get through each day, remembering and being grateful for all the things we have in this life. For the chance I now have to see my kids grow up. For the chance to be a dependable person again. To be there for holidays, and birthdays, all the things I've missed over the years. I'm really very, very lucky, even despite the setbacks.<br />
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Helping other heart patients has been my salvation. Because it's something I can do to give back. To be grateful for what I have been given, to share helpful information that only I know because I've had these surgeries. No matter where you come from, we have setbacks, we have successes and failures.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mason, our cute little guy!!!<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-25472124163810686092013-09-17T08:20:00.002-07:002013-09-17T08:27:05.584-07:00Jenny-Being a parent is like wearing your heart on your sleeve...Being a parent is like wearing your heart on your sleeve. I've heard this saying most of my life but didn't really understand it until I had children. It's so hard to see children fall, and not be able to catch them. But maybe it's not our job to catch them. It's our job to teach them how to fall and to get back up. As parents we aim to raise independent, bright children who think for themselves. I went to college with people who didn't know how to wash their own clothes. Which shocked me because my mom and dad taught us everything about life (excluding cutting the grass and car maintanance!) So I'm determined to teach my children as much as we can to prepare them for life. I'm trying really hard to not control everything and to be okay with that fact. But it's hard when things happen to kids. It's hard not being able to prevent all the falls in life. That being said I've had another setback.<br />
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First, I should say that Ava is fine. But here's what happened. On Thursday, Ava and I were off to soccer, she was thinking about what the team name was going to be and daydreaming about playing. Ava was holding her soccer ball and I was holding a bunch of water and my purse. We were in a parking lot and I told Ava a truck was coming and to stay on my right side. She heard me but I say things so often she doesn't always listen, do any of us listen all the time? Then I heard the ball hit the ground. I screamed and turned sharply towards Ava on my right, to grab her but she wasn't there. She ran in front of the truck to chase her ball. I flipped to my left side praying she didn't get hit. There she was an inch from the bumper. Thank God the driver was able to stop in time and was paying attention. It's was awful and overwhelming to think just that fast I could have lost her. <br />
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Will it be the last time something happens to one of my kids, no, unfortunately. We can't protect them from everything. But it's so hard not to want to bubble wrap them and let them go a little bit. When I moved so quickly to find Ava I injured my muscles. I wasn't sure if I ripped my new lead so I ended up having to get checked out at the hospital. All is good, I didn't rip it but it's hard trying to parent with a body that is not 100 percent. I'm working on it and need to rest a few more weeks.<br />
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Today marks 6 weeks since my lead replacement surgery. I'm going to try really really hard to not break it again. But with two kids and life I'm not sure if that's completely possible! But I'm going to try! It's frustrating having constant setbacks and I'm looking forward to getting back to normal life. I miss the gym so much!!! But I'll have to start back slowly. I still have a hard time walking past the weights because I miss lifting so much. But I think I will be able to run again. I'll find out more in a few weeks during my post surgery checkup. Until then I'm going to eat really clean and try to learn to sit still. It's not easy ya'll !<br />
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I was talking to Monique last night about everything that has happened for the past year for both of us. We've spent a year recovering. In a few weeks it will be our year anniversies since her accident and my open heart. We were in the ICU at the same time, she was in Lafayette and I was in Houston. A year of rehabbing and surgeries, and successes and setbacks. But we press on, we move forward, because we don't have another choice. Because it doesn't occur to us to quit. We wouldn't have it any other way. We are recovering because we're type A and when we set our mind to do something we make it happen. No matter what. But both of us have to extend our internal deadlines for some of these things that we want to do physically In my head, I'm a 18 year old runner, but my body won't let me do exactly what I want, yet. I'm going to try the best I can to get back where I want to be. But patience isn't a virtue I have conquered yet!!<br />
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Trying my best to focus to changing the things I have control over and accepting the things I can't change. I'll get back in shape as soon as I am able to run again. It's a journey but I see the light at the end of the tunnel now. So thankful for my life and this year. It's taught me that nothing is perfect, but we're all trying to do the best we can.<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-7116697428117956912013-09-05T12:14:00.003-07:002013-09-05T15:19:35.287-07:00Jenny- Growing up...Building rockstar kids...<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Dr. Bud Frazier</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ava with Lisa and Rebecca (my sweet friends and Women Heart Leaders)</td></tr>
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Most of the children in our town started school last week. With the new year comes new dreams and possibilities. It made me think about the people in our children's life and what influences us to be who we are as people. Who knows which experiences give us that spark to help direct us where we need to be and how to get there? It's something I think about often because Ava is almost 7 and we have talks weekly about "what she wants to be when she grows up." It's our job as parents to see the potential in our children and direct them where to focus their interests.<br />
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Last week I had the opportunity to meet Dr. Bud Frazier, the doctor who has done more heart transplants than anyone in the world. He lives in Houston and runs a lab building heart pumps, operates on patients, and oversees their care. He was kind enough to meet with our heart group at Woman Heart. Dr. Frazier is a funny, gracious, humble man who told us about his experiences and his history. He's a guy you would walk past in the grocery store, blending in with the rest of us without any air of superiority. Getting to meet him was a gift. Knowing the accomplishments this man has made to medical science made me think he must have known his entire life what he wanted to do with his life. As we all found out, the most surprising thing about Dr. Bud Frazier is he could have become a dentist or Methodist Minister instead of world famous heart surgeon/inventor. It's all about the influences our children come across in their lives and their experiences. He looked at the world around him and saw a few career opportunities in front of him because of who influenced him.<br />
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Opportunities that come in life are sometimes unexpected. Some people get to do what they love as their career, while others search for finding their place in the world, some don't ever get motivated. Some people are able to take tragedy and spin it into something positive. What started out as a devastating football injury changed the course of Dr. Frazier's history. Is he had not been injured and had to retire his football jersey the world as we know it would have forever been changed for the worse. Why? Because this man sees a problem and took it upon himself to fix it and instead he changed the world of heart surgery, forever. He invented the heart pump!!!<br />
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What changed Dr. Frazier into thinking about a career in heart surgery? Surprisingly enough, it was procrastination of all things! He had a research project due and a friend offered his topic for both of them to write about. The project was about transplants in dogs, and Dr. Frazier became interested in them. He transplanted a spleen from one dog to another and took care of that dog every day for a year. He bonded with that dog and was very upset when the dog died one year later. Doing that project made him want to do transplants. He continued operating on thousands of people, getting to hear their stories and being a part of their lives. One 24 year old lady with two children was dying and was stuck in the hospital completely bedridden. She haunted Dr. Frazier because she wrote him everyday in the hospital asking to die. She got her transplant and is living a full, beautiful life 10 years later because Dr. Frazier cared for her, not as just a patient but as a person. Some of those people stayed with him. Like the boy who gave him the idea for creating a heart pump.<br />
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This Italian boy was 19 and dying. Dr. Frazier was operating on him with another surgeon and Dr. Frazier had his hand inside this boy's chest pumping on his heart when the boy opened his eyes and looked at him directly in his eyes. At that time a heart pump did not exist and the boy died after Dr. Frazier was pulled off of him because nothing could be done at that time to save this boy. But Dr. Frazier decided then to build a pump that would do what his hand could do. The rest is history. He really made it sound simple, he had a problem and he needed to build something to fix the problem. He made it sound as if he was working on car engines or something instead of hearts! He has to work with companies/manufacturers that are willing to build new heart pumps. That's easier said than done which is the biggest frustration he has with his life's work, finding people to build what he needs. But they aren't far away from designing a total artificial heart replacement which would revolutionize the way people can live with heart failure.<br />
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Some of us know from a very early age what we want to be. Others pick a career based on their talents. But a select few accidentally, miraculously find their calling. Ava could be the next person to invent something that changes tens of thousands of lives. But we'll never know our true potential unless we keep looking for it. Unless we help our children find their focus in this world. That doesn't stop when we become adults but it's something we all should strive to work on. Finding our place in the world. I'm still working on it...are you??<br />
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More information on Dr. O. "Bud" Frazier's work in link below.<br />
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http://www.texasheartinstitute.org/Research/Devices/Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-41602818844104989652013-08-30T13:27:00.003-07:002013-08-30T13:27:24.063-07:00Jenny- EP Study and AblationsThis week's post is dedicated to Joanne!<br />
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I've had two ablations. So I'll explain each type of ablation and what is involved with both procedures.. This week we'll go over ablations. Next week I'll talk about open heart/ablations.<br />
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I entered the Operating room and was given some medications. They told me ahead of time I would not be asleep, so I was anticipating some pretty bad stuff! I wasn't asleep but was given enough medication to think the clouds on the ceiling tiles were moving. They weren't! They give you medications to make you forget. <b>So I asked for 6 hours straight when I could go to the gym!</b> I also kept telling them if they needed to aggravate me to go get my husband because no one can make me mad faster than him! Oh well, the stuff my poor docs have to listen to while I am having surgery!<br />
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The first step of a ablation is to conduct the EP study. This is the "mapping" process that is used to identify the overactive nerves inside the heart. So they put you on a table and make a tiny incision in your leg. (Usually your right leg.) You don't feel the catheter at all. It's inserted into a femoral vein. <br />
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It sounds weird to having surgery while awake and it seems pretty scary. But once you are in there it's not scary. I was more excited to get it done than scared. Because I wanted a normal life. I jokingly told the team, "Let's go play laser tag in my heart!" That's kind of what it's like. The surgeon will ask you questions in order to try to get your heart to speed up. Sometimes they try to make you mad or ask math questions. It's very hard to answer math questions when you are on loopy drugs. Since most people with Inappropriate Sinus Tachycardia speed up while standing it's hard to trigger the heart while laying down. But they need to trigger you so they can see the messed up nerves "light up" on the screen. Sometimes they have you open and close your hand and make a tight fist because that will speed up your heart if you have an electrical glitch like me. (Go ahead, try it, see if it works on you.) I'll wait.... You'll have several large TV screens above you which you will be able to see. You can see each blinky light (which is each area that needs to be abladed.) They use several technicques to visualize the area. You have a lot of equipment around.<br />
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Once they get a clear map they can decided which areas they are going to ablade. The mapping process can take a long time. Mine took several hours. About 6 hours. But they can go anywhere from 2-10 hours. When they are going to start the actually ablation they trigger some nerves. You can feel what they are hitting sometimes because you will feel a sensation in your arm or in your diaphragm. When they hit your diaphragm nerves you feel a jumping sensation in your belly. Very weird. They have to avoid hitting the phrenic nerve during the surgery because that's the nerve that moves your diaphragm so you can breathe.<br />
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You can feel when they ablade. It was intense but I didn't cry. The doc would yell "Fire" and the techs in the next room would fire the laser. I'm not exactly sure how that part works. Very important that you don't move during this part!!! I had a mixture of hot and cold ablation. But it's strange because you'll drift off and someone yells "Fire!" it's a very surreal experience. But you just stay still and it hurts for a few seconds while they burn each nerve. It's not bad. Sounds much worse than it was for me. Sometimes they have to use adrenaline to speed up your heart to see where the problem is located. They used adrenaline with me, you feel your heart pounding and it's hard to catch your breath. But it's what needs to be done in order to find the nerves causing the electrical problem in your heart.<br />
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When they used the adrenaline I could feel my heart pounding and I felt the sensation of not being able to breathe. I let my doc know and he told me he could see the problem. Then he said he was putting me to sleep. To get a better angle on the location my doc decided to go up the other leg. I had about 5 points of entry in my legs. They had found an AVNRT (AV Nodal Reentrant Tachycardia.) This was the cause of my SVT (Super Ventricular Tachycardia.) It's a nerve pathway that they say is like a dog chasing it's tail. So when you are in that pathway you can't breathe. It happens at the weirdest times like when you eat. You can just be standing there minding your own business and your heart takes off like a racehorse. It's not awesome. But over the years I learnd how to calmly say, "Excuse me I'm in SVT can someone check my pulse/ox? My doc was able to ablade the pathway. I have a 99% chance that I will never have SVT ever again.<br />
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After you get through recovery after the EP study/ablation you will be asked to lay still for several hours. This also means not getting up to pee. It's very important not to wiggle your feet after the procedure. If you are like me you'll want to move. Bad Idea. Unless you like it when you start to reopen your incisions and a large man holds compression on your vein or artery for you for 20 minutes. If you do they incision sites will open up and start to bleed. I know because it happened to me. A very large man was send in to hold compression on my crotch to stop the bleeding. It's a great time to ask lots of awkward questions! It was kinda funny. But unless you would like to reopen your wounds don't wiggle and do what the nurses tell you do!!!<br />
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You can usually go home the next day. The recovery period is strange because you will feel burning sensations. For months. Off an on. You'll feel beat up. Picking up anything over 5 pounds will make your chest hurt. That includes pushing grocery carts. So be careful what you do after surgery. The surgeons try very hard to burn as little as possible during these surgeries. You can hear them counting off while they are operating. I was very close to getting pacemaker during my ablation. The surgeons wait and if your heart clicks back on they continue. If not they stop what they are doing and put in an emergency pacemaker. <br />
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Yes, that sounds scary but trust me. You are totally safe in that OR. They have control over everything. So pick a fantastic surgeon and get on board. Anything that gets you well is okay by me!<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-78110017586082569202013-08-16T18:53:00.000-07:002013-08-16T18:53:30.531-07:00Jenny-Adjustments<div class="separator" style="clear: both; text-align: center;">
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I finally got to see our new house today!!! Two weeks ago it didn't have grass and wasn't painted. It's amazing what two weeks, sod, and a construction crew can get done! It's finished and we move in a few weeks. I am so excited to be moving on in our new life, in our new town. It's pretty exciting. Ava's new school is incredible and brand new. We signed her up for school this week and I can walk her to school in the mornings. I don't know why this sounds like fun but I thought it would be a great time for me to talk to the kids in the morning and afternoon and get in some extra exercise! Looks like we are starting off the school year right. Our family is doing great and we love our new town. Miss all our friends from League City and hope to see everyone soon! Glad we had our new house to think about because it's been a pretty boring recovery.</div>
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I've spent the past week and a half sitting in my bed watching tv because my pacemaker wasn't set up correctly. I've watched more tv then I care to admit the past month. I'm stocked full of Orange is the New Black, (OITNB if you're cool) ,Breaking Bad, and Dexter. I can't think of any more movies to watch and I'm really really sick of the apartment. I also really miss our awesome friends and neighbors at our old house. My friend Brian always helped me rehab from the surgeries and now he's too far away to walk with me!!! Hey Brian!! I don't know any people at the apartment and it's too quiet around here during the day.</div>
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My pacemaker is setup exactly the way it was before but for some reason I needed it changed. It might be because when we installed the new lead we had to connect it to a different location of my heart. I was going to wait until my 2 week checkup next week but decided that I couldn't wait any longer. My cousin was kind enough to spend half her day with me going to the pacemaker clinic. Whoo Hoo for amazing cousins! My rate response setting wasn't right and I was suffocating in the car, with a really fast heart rate like I was running full speed with a heart rate of 150 while sitting. Taking a shower is also making me speed up too fast. It's not awesome. The tech said the water hitting my device is making it think I'm working out and speeding up my heart/breathing. Dang this thing is sensitive! Guess I'll be taking showers backwards.<br />
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So we walk in and meet Robert, who looked exactly like Hank from Breaking Bad! Yep, I'm definitely watched too much tv! I explain my dilemma of not being able to laugh, sneeze, or walk without panting like a dog. I should videotape one of these pacemaker adjustment meetings because they are freaking hilarious. As the device is draped over your shoulder you have about a 3 foot area to move attached to the computer. So you have to recreate what pisses off your pacemaker in that area! Every surgery is different and I get new problems. Last week I couldn't turn left, now laughing is a huge problem. I proceeded to get hooked up the machine and fake sneezed, did my trademark wiggle move, and fake laugh really hard so that "Hank" can see how messed up my settings were. I thought about barking just to throw him off and see if he laughed but I resisted the urge. It's pretty funny to watch and definitely not how the older pacemaker users conduct their pacemaker tests. <br />
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"Hank" understood what I was trying to accomplish and helped me figure out a way to make it happen. So he made some changes and I felt the pressure taken off my neck immediately so I could breathe. It's actually pretty miraculous Steffanie and I ran around the building, jaunting through hallways, running through calwalks while I waved one arm in the air, wiggled and fake coughed. I've lost all sense of modesty and decorum at this point and it's only about getting the settings adjusted. So I ran around the building for 15 minutes and figure out if the new settings are going to be okay. It's hard to tell immediately and you actually really need to try out new settings for about week before you really know.<br />
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You can tell when you get a really good tech because his first statement to me was, "Wow, you were really active, what happened in July?" So he got it. He knew from the recordings my pacemaker logs that I haven't moved off my butt since July when I ripped the lead. I feel like the light switch is back on! I'm ready to move. I haven't been able to get Ava's stuff ready for school or do any normal daily activities. So I'm so grateful that "Hank" was there and able to adjust my sensitivity chip. Yep, I'm a robot. But aren't you glad I have a sensitivity chip? So the next time I make some jerkface comment ask me where my sensitivity chip went!<br />
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The day got even better because as we made our way to the elevator to leave a lady in her 60's asked which one of us had a pacemaker. I said I did and she jumped to high five me, which was strange but great! She said she "joined the club" in June and I told her I "joined the club" in February. Pretty great way to end the day, especially since I entered the building having a hard time getting enough air to walk and and hour and a half later we're high fiving in the hallway.<br />
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So here's to you getting your high five for the week!! Amazing people are everywhere, so go out and make some new friends. Call your old ones too. We all could use some support!<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-82050574991030358622013-08-09T07:52:00.002-07:002013-08-16T19:35:01.281-07:00Jenny-Broken Heart MendedHave you ever heard the quote, "Well Behaved Women Rarely Make History?" It's something Perky and I always tell each other. In times of struggle you have to dig deep even when you want to quit. Plus, sometimes a drastic action is what you need to get your head in the right place.<br />
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I was in the hospital last week with some mystery thing and the cardio docs couldn't figure out what to do. They sent in a surgeon I had in the past who did an experimental surgery on me. We thought we'd try the surgery again to see if we could make my heart calm down. He came to see me but said it was too risky and he was scared I'd have a stroke or a heart attack. He seemed scared. I cried because it felt he had given up on saving me. That was a rough day. But I had to regroup and decide what to do next. I am not a quitter. </div>
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I made myself walk in the hallway to clear my mind. And that changed everything. The nurses chased me down yelling at me that I was in V Fib (which can lead to sudden death.) I told them I was fine but they didn't believe me. Then I snuck out my room again, and it happened again. Then 7 cardiologists and came to see me. They had an idea what was happening. I had hope again. I was really praying they would find a problem with the pacemaker, not with my heart. Sure enough, they did. If I had "behaved" they wouldn't have found the problem.</div>
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Tuesday I went in for surgery. Some guy was waiting for his cardiac surgery and wouldn't stop talking about his death. He kept talking about the corener coming to pick up his body in the "meat wagon." He said this in a waiting room of 25 people waiting for their heart surgeries. You could hear a pin drop. No one was talking but him. Everybody somber, reflecting on what was about to happen. I really wanted to tell him to shut up but I resisted the urge. It was seriously hard though! I also wanted to tell him the surgeries keep us alive, so not to be scared of them. It's a miracle these docs perform everyday, it's a gift. </div>
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Then they called me back. I met a lady in her 80's getting her first pacemaker. She asked me questions so I answered them. I gave her my crash course in pacemaker implants. I just can't seem to stop teaching wherever I go! They called me back to the OR. The cath lab seems like a second home now. The blue lights glowing seem reassuring in a weird way.</div>
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Foster, the pacemaker tech was there in the operating room with me. He's the tech that went out of his way to design programming for me and April. He's not a morning person, but I was really glad to see him. Because he knows exactly how I need my pacer set up. Everything was prepped again just like 6 months ago. The nurse and I were cracking up that only one boob gets cleaned for the surgery! They put the blue tarp over my face. It's really aggrevating because my hands get tied down during the surgery too. Your face always ends up itching and you can't scratch it. </div>
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We started the surgery and I could feel my skin burning. They used a cauterizing tool to cut out my old scar. I let them know I could still feel it so they injected more drugs into the skin around my incision. Then I don't remember anything. When I woke up they were strapping my arm to my waist and telling me it was over. I was confused because you stay awake for pacemaker surgeries. The nurses were babbling about cardioversion. I assumed they were talking about another patient. But then I realized I was asleep the whole time. So I asked them if it was me. The nurses looked at each other and them they told me what happened.</div>
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They said during the surgery I went into atrial flutter and they had to defibrillate me. They shocked me to get my heart into a normal rhythm. The nurses in surgical care told me I had a burn mark on my chest from them shocking me. It's on the opposite side of my pacemaker. Looks like a giant badge! Here it is...</div>
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I've had a lot of time the past two weeks to think about what I did wrong. I wanted to bring the kids on vacation. I wanted everyone just to have a normal vacation. But instead I ended up in the ER and came home broken. I don't want to live like I have a broken heart. But I think it's time I accept that I can't do what other people can do. I'm going to have to watch from the sidelines. It's not perfect, but I'll be alive and I will be able to watch the kids grow up.</div>
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I'm not in much pain. Actually all my chest pain I've been in for a month is gone. It was all due to the lead being in the wrong place when I moved it pulling Philip out the water. I'm so grateful to be fixed again. To be almost whole again.</div>
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It's hard for everyone to understand why I want to move so badly. But when you've been sick for so long it all you dream about. I felt so much better with the pacemaker I just wanted to live my life. But I got a little too comfortable. Getting shocked helped me realize I'm in a really serious battle with this heart. The end game is going to be heart failure. Which is probably why I push things the way I do because I never know what's going to happen. It's why I tell everyone I love them a thousand times. Because life is short. So mend your fences. Take care of your heart and leave the world a little better than when you came into it. Have a great week!</div>
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Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com1tag:blogger.com,1999:blog-5991635848634690379.post-45076217358918154792013-08-03T15:46:00.002-07:002013-08-03T16:24:28.786-07:00Jenny-How you break a Partymaker....Monday I was not feeling well. Just a little bit "off" like you feel when you are getting sick. I ate lunch but felt strange and wanted to rest. I was lightheaded. I called my pacemaker clinic and told them I needed to come in right away. I thought the programming had gotten messed up. Which happens sometimes when you get your pacemaker checked. If the technician clicks on the wrong thing they can change your programming!! So I thought that was what was going on.<br />
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I drove myself and Ava to the office. As soon as I stepped out the car I knew I was in serious trouble. I couldn't talk so I couldn't alert the valet so I decided to try to make it upstairs where I needed to be. I whispered to Ava to hit the floor button 24 and we were on our way. I didn't think I'd make it out the elevator. But I did. Just barely. I couldn't see where the office was so I looked around and motioned for Ava to go that direction. Then whispered at her to open the door. I knew I was going to faint so I laid on the floor, of an office with about 20 people in it. 20 heart patients and their families. No one came to my aid. Ava calmly waited in line behind people registering. The front desk couldn't see me. I went unconscious. Then I woke up and yelled it was my pacemaker and I needed help. Then Ava told them my name and my information. She yelled at the entire office to read my medic alert bracelet and that I have a pacemaker. She got me help. <br />
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Next thing I knew was my doctor was there. I asked him to make sure Ava didn't see anymore of this and he promised she was safe. Then they tried to put me in a wheelchair but I passed out again and slid onto the floor with my leg bent behind me. So a nurse tied me to the wheelchair and they went to check my pacemaker. I was in robot power down mode. It felt awful. I couldn't hold up my head. Then the paramedics showed up and took me to St. Luke's.<br />
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My heart twin April came to visit. She figured out it was my left side. I couldn't move my neck, head, shoulder or left arm and breathe normallly. I was panting and gasping. It feels like I'm being suffocated. Once we figured out what it was we called our wonder doc, Dr. Mehdi Razavi on his cell phone and told him we figured out it was the side with the leads and seemed to be the pacemaker. Some docs wouldn't appreciate being told by a patient what was wrong but that's what makes this doc so different. He listens to me. He doesn't let ego block him from hearing me.<br />
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Fast forward a few days I had been trapped in my room for days with a dayglo bracelet on my wrist that says "FALL RISK" they gave me yellow socks too which means I'm not allowed in the hallway. But I knew if I didn't walk we wouldn't figure out what happened so I snuck out. I changed my clothes so they wouldn't notice me as fast. I went around the unit 1 lap and then the alarms went off and the nurses were full out running towards me telling me I was about to crash. But I wasn't. I didn't even feel bad right then. They said I was in V Tach, which can lead to sudden death. Several docs checked the montiors and confirmed the v tach. Then Dr. Razavi called and said it was the pacemaker. So I snuck out again. The nurse hates me by this point and thinks I am an idiot. It happens again, they run at me again and make me lay down in the nurses desk. I'm still not feeling that bad. They tell me my heart rate is 270. But it wasn't. <br />
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So the whole crew shows up. About 7 cardiologists. They changed some settings on my pacemaker and turn down the voltage. I turn my head to the left and like magic I can do it. Then one of the docs tells me I was breathing 150 times in a minute. People normally breathe 20 times in a minute. So it was awful. The team realized right then what it was. I moved my lead!! Yes, it was still connected, electricity was going through it. But it was moved so it was now hitting my phrenic nerve. So every time I moved my shoulder, arm, or head I was hitting this nerve and couldn't breathe. It was a Eureka moment. We had an answer after days of not knowing what was wrong. After days of not being able to move at all.<br />
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So Dr. Razavi called me. He was amazing as usual. He's going to operate on Tuesday. As it turns out my heart is a little more horizontal than most hearts. Fun fact, Did you know when you bend over slightly the bottom of your heart tips forward? I didn't know that! Docs often ask patients to learn forward in an exam. This is exactly why! So they can listen to your heart better! So my leads needs to be placed further away from this nerve. But since my leads are screwed into my heart I may have torn my heart slightly. We won't know for sure until he gets in there. So my whole device will be removed, the leads will be in a new location and then we recover for 6 weeks all over again.<br />
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It's going to be a long wait until Tuesday because I can't move. I want to see the kids but the slightly movement is shaking my leads and I can't breathe. So I'm home but stuck in my room. I'm so relieved my daughter knew what to do in an emergency situation. Something all our kids really need to practice with. Make them remember vital information. Practice what to do in an emergency. It's so important.<br />
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So next week Bob Marley and I have a date with the OR. Then I'm be back to my normal robot self!! I promise to behave this time. As it turns out you can pull hard enough to break a lead!!!<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com1tag:blogger.com,1999:blog-5991635848634690379.post-74745219891379201372013-07-29T23:48:00.003-07:002013-07-30T09:45:33.084-07:00Sometimes when God closes a door, he nails the windows closed too! <span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-size: 18px; font-weight: bold; line-height: 24px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> </span></span><br />
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<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-size: 18px; font-weight: bold; line-height: 24px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Hi everyone...I want to apologize for my unexpected hiatus! After the last court date I wanted to take a week or two off to gather my composure and get a clearer picture of things, then I had some unforeseen health issues come up. With all that behind me, I wanted to tell you what I've learned, because I was delightfully surprised to find that something could actually be gleaned from all this!</span></span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> First, I was completely disgusted with the sentence given to Derek Perilloux, the man who nearly killed my daughter and myself because he chose to drive with a blood alcohol content of 0.16. House arrest is too good for a man who inflicted over $1,000,000 in insurance costs alone, not including my $45,000 vehicle he totaled and taking my nursing career from me! So, I thought..."what would be enough? Would ANYTHING really hurt as bad as the pain he's caused us?!?"... I decided there was NOTHING that could do that!!! No earthly sentence will ever do justice to the pain this man has caused my daughter, my family, my very LIFE! So, to him I say "karma is a BITCH! You'll get yours and no court, no victim like myself will have to make her impact statement to ensure your punishment".</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> I didn't reach those conclusions easily. I went home from court that day completely disgusted. How could this happen?!? Why wasn't a harsher sentence imposed?As a person who always looks for the "signs" around me, I couldn't understand what could possibly be learned by all this! After weeks of deliberation, I came to one conclusion: this wasn't God's punishment, but that of a court filled with flawed, imperfect humans imposing what THEY thought was "good enough". Why wasn't God there to let me know things would be worked out somehow, some way? Because sometimes, we have to go on blind faith. We can't have the answers all the time, that would be too neat, too tidy. Sometimes shit happens, and you just need to hang on for dear life with all you have and trust that even though you have no control over the circumstances, things WILL even out in the end.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> Needless to say, I didn't wanna accept this. I felt so alone, so deserted. So many of you have told me how strong you think I am, how "inspirational" my story is. I wasn't feeling inspirational...I felt like a failure. I'm a control freak who has to have everything just so. Things and people outta my hands make me uneasy. Then, it dawned on me...maybe that was why I had the accident to begin with. Sometimes things, people we love, need to be taken from us, because they aren't right for us, and maybe so we know how much we can handle on our own, how strong we are. Without coming out of our "bubbles of comfort", we never truly know what we can do.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> You've heard people say "Sometimes, when God closes a door, he opens a window"? After these last few weeks, I say "sometimes God slams the door in your face and nails any possible alternative exits closed to prevent any hope of possible escape from the shitty clusterfuck in which you find yourself!!!"! You're stuck like chuck and MUST accept that which you naturally resist! Now, this is the part where everything came together for me! I felt alone, "woe is me, it sucks to be me sometimes". Then, I naturally thought back on other difficult moments in my life, to remember how I got through...times where I only THOUGHT it sucked to be me because of surrounding conditions, but have been lucky enough to work through. I concluded that sometimes, when God locks me up to swallow my medicine, he gives me amazing people to help me through! I suddenly realized that all those times I thought I was alone when I was younger, I had my parents, big sisters and big brother to guide me through. In grammar school and high school, I had my best friend, Lizzie, to pull me through. Sometimes, after I got sick with my autoimmune disease then had my accident, when I had to have surgery after surgery, I had Jen to cheer me up and </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">make me step back to see how lucky I am that my heart works the ways it's supposed to! And when it seemed that my family and friends were out of reach, I had my fiancé, and the best man I've ever known, Kevin, holding my hand through it all. I've also had all of you, telling me how brave I am. But, I want you to know, I'm not brave, just extremely hard-headed and incredibly blessed with people who love me enough to make sure I get through it all! </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> The conclusion? No matter how our situations differ, just about all of us are lucky enough to have a handful of people we can always count on. We are never REALLY alone. Life sucks and, inevitably, we will all, at some time or another, feel that we are alone. It might seem we've somehow been foresaken, but even windows that are nailed shut aren't shatter proof! It's just a matter of having people who love you enough, know you well enough, to help you break through them! When caged like an animal, fight back like one! Thanks to my awesome family, best friends-Liz and Jen, and especially my sweet angel, Kevin...and to all of you, without whom none of these important lessons could be learned! I love you all!!!</span></div>
Anonymoushttp://www.blogger.com/profile/09262957884781285812noreply@blogger.com4tag:blogger.com,1999:blog-5991635848634690379.post-18219302233911036392013-07-20T15:33:00.001-07:002013-07-20T15:33:34.293-07:00Jenny-The bucket listSome people might see these things that happen in life as reasons to stop trying. Reasons to stop living. That wasn't my experience with the other side. Getting so close to losing my life or life as I knew it made me just want to try harder to fight harder. Not just for myself but for my kids. So when you have one of these setbacks just don't forget to see the bigger picture. Lessons can be learned everywhere.<br />
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I didn't have an easy time with my pregnancies. I had to go through a LOT of testing, medications, and trials to have our precious kids. So I don't take them for granted. I don't think anyone should take having children for granted. Because so many people can't have children, or never had the opportunity. It's something that has fulfilled me in ways I cannot express. My kids have the greatest questions about life and offer some pretty great insights at times too. Makes me feel like we must be doing something right. Since I was injured on vacation I've had lots of time to think! I just started back at the gym but I try really hard to make sure everyone in the family is happy. Mason wanted to go to preschool so I found one for him. Ava has lots of plans for the summer too.<br />
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That being said we all have days when the kids are screaming and you are so tired you could cry but you can't stop. You can't stop because you are a mom. My two little driving forces are always there to make my realize what is important, who I'm fighting for, and who I need to teach each moment I have available. I'm so lucky to have them.<br />
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So we work on life lessons, we play, we explain things over and over again. Aren't we all searching for something? Trying to learn something new? I hope I never lose that enthusiasm for life that children have, their inquisitive nature, the many questions they have about things I've never thought about. Put me at the kids table during Thanksgiving. I'll have a great time.<br />
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I have a lot to do this summer. We just moved to a new city and I had to get everything set up. We're also on the hunt for a new house. So these things have taken up a lot of time. But Ava has a bucket list. Yes, our six year old keeps a running tally of things she would like to do and it's my job to make them happen. I'm not exactly sure how this happened but she makes sure I know what's on the list. I'm basically a part-time chef, teacher, driver, and all around planner.<br />
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Making promises to kids (and keeping them) is really important. So when I say I'm going to do something I really try to make it happen. So in between writing deals, making offers, working out, and cooking I've been subjugated to make these dreams come true. Which is really more of a gift to me than is it to Ava. Because I get to experience these things with her. So we took the family vacation. We showed Ava the ocean. She got to meet a famous dolphin. This week it was seeing the movie Turbo, without her screaming brother, go to a trampoline place with Stacey and me and literally bounce off the walls. Next week it's making a pineapple upside down cake (Seriously where does she come up with these ideas?) and riding a horse. Not at the same time!<br />
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Stacey and I were really excited to go jump and happily got ready to go without thinking other parents wouldn't be jumping. The thought just didn't occur to me. So we went today and for an entire hour we jumped, and laughed, and fell, and bounced off walls. I jumped in the foam pit and climbed out cracking up laughing. Yes, I was one of the only adults out there. Why? It made us sad to see parents there on their phones, on their computers waiting in the lobby. Sure, we all have stuff to do. Not every minute can be dedicated to fun. But these moments are the ones we will treasure. These are the best days of of lives. The ones we can spend together.<br />
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But in 10 years or 15 years is any of that stuff going to matter if we didn't spend this time with our kids? No, it's not. Their dreams should be our dreams too. That's the way it should be, because we brought them into the world. I wouldn't have it any other way. So I'm off to find a place for Ava to ride a horse and I guess we'll be baking this week too. Don't worry. Mason gets his dreams too. For now they mostly involve superheroes, or drawing sharks eating a variety of things. But pretty soon he'll be making a list for us too. So they are directing us on what they want in life. It's our joy to provide it. Hopefully all of us never lose the wonder in a child's eyes when they get to experience something new. <br />
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Like I always say, "don't forget to stop and look for ladybugs." It's things like ladybugs that kids notice all the time and we are blind to seeing anymore. Because we're always looking up, propelling forward in some crazy foot race, while kids are looking at the ground and happy with things that are free.<br />
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Hope all of you have a great week.<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com1tag:blogger.com,1999:blog-5991635848634690379.post-2567525847414021362013-07-13T12:23:00.003-07:002013-08-03T16:22:31.111-07:00Jenny - Dream #1 Realized and Setback!<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I'm baaaack!!!! Sorry for the hiatus! We were on a VACATION to sunny Clearwater, Florida!</span><br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">So over the years I've had lots of time to think and dream of what I would do if given a healthy heart. Last week we finally had the chance to cross our first dream off the list...Go on our first family vacation. Mason got to go on his first airplane ride. Ava hasn't been to Tampa in about 4 years and we were all thrilled to be there together for the first time. It was the culmination of a dream for me, to see our friends, expose our kids to life outside of Houston and hospitals, and act like a normal family. I should apologize now to all the people on the plane that had to endure his antics! Especially when he yelled for 15 minutes that he needed to poop. It was kinda hilarious. But we arrived safely. We met with our Matchmakers, Anne and Matt and their beautiful kids. Had a fantastic week. Full of lots of swimming and cooking (not at the same time.)</span><br />
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We got to see Winter, the dolphin from the movie Dolphin Tale! It was incredible to see her swim without a tail. She was precocious too, trying to open a door to get into another tank to play. No disability in Winter!! She was playing and swimming just like all the other dolphins. I think she is a great example to kids with disabilities to not let anything stop you! Ava was really glad to see all the sights from the movie. Mason was thrilled they had stringrays and a hammerhead shark display! The kids got to hold her prosthetic tail!<br />
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Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com2tag:blogger.com,1999:blog-5991635848634690379.post-55999378796320321382013-06-28T09:25:00.004-07:002013-06-28T09:52:50.938-07:00Jenny-Kale Yeah!So the Katy adventure is continuing. I was grumpy about it the first week, resistant to change. I almost cried when I saw the closest gym because I hate it there. It's hot, the machines are older, and I just wanted to complain. I think the culmunation of a lot of changes all at once was just getting to me. I always thought I was pretty good with change. But I'm realizing that's just not true! I'm stubborn as hell and I plan. I should just accept these facts and work within them! I'm over being grumpy now over the move. But I don't like the "new kid" stares at the gym. Why do people stare? I wish people would just talk and ask me questions. I can't focus on the negatives so I'm choosing to see the positive in our move. Like my gym has a juice bar! A juice bar!! I'm telling you people it's not that hard to make me happy! The whole foods is really close to where we live and I laughed my butt off seeing this last night...<br />
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Kale Yeah anyone???</div>
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Busy starting our 3rd week week here I'm excited at what this city has to offer. I'm learning my way around town and figuring out that this city is much more focused on health. I'm also trying to adjust to all the changes this new city forces me to make and old habits to break. It's very hard to move further away from my friends. I've always thought of myself as a person that handles change well. But I don't. I'm a planner. I like to see my plans through until the end. It's just something I need to accept about myself and use it to my advantage. But I'm trying really hard to accept what this move is going to do for our family. SO many positive changes for us! Being resilent is one of the most important things I can teach my children. But I have to teach them by example.</div>
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I've spent a lot of time this year having surgery. It's time for me to rebuild my body and make myself the best me I can be. I could list all the stuff I can't do with a pacemaker but what would be the use in that? I choose to focus on what I can do and working within those "limits" so I can stay healthy. I run really slow. But I'm freaking running. Something I haven't been able to do in a long time. I'm convincing a bunch of my friends to run too. So we can all celebrate together. It's a good time in our lives and I want to be that role model for my children. I want them to grow up knowing that working out, and eating right is a part of life. </div>
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I've been focusing on eating extremely clean and I'm seeing fantastic results. I read Kelsey Byers new book about Eating Clean called Eat Clean and Follow Your Dreams . My overall review of the book is it's a quick read, and it's a great jumpstart for people who aren't familiar with eating this way. Experts say your results are 80% diet and 20% working out. So I'm shifting the balance of things. I'm focusing on eating very good foods, focusing on putting certain nutrients in my body and detoxing from sugar. I still eat one small piece of dark chocolate a day. But I'm not on a diet. This is the way I need (and want) to eat the rest of my life. People write me all the time about how to start eating clean. So if you are interested check out this book. Incorporate some small changes at first then work your way up, or go cold turkey, whatever works best for you. Work with your strengths to overcome your weaknesses.<br />
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I got mad this week seeing a so called "health expert" suggest that people should eat junk then just work out more. That's such a load of crap. Of course I love good food, I'm from New Orleans! But do I think we should just cram our bodies full of junk? No! It's not just about weight, it's about feeding your body nutritious food to reduce inflammation and reduce plaque in your arteries. I improved my running time by 2 minutes in just a week because I was fueling my body correctly.<br />
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We all have to start somewhere. So make the decision today that you are worth it, your family is worth it, eat to live. I had to cut down on all our material possessions movings from a large house to an apartment. I thought I'd miss all "my stuff" but I don't, at all. I'm realizing I didn't need all that stuff anyway. The same way I don't need junk food in my life. I don't need it in my home. Scale down your life and make things simple. We're all too complicated these days. So start small. Focus on your health, your family, your emotional wellness, and being a joyful person. With every negative find the positive. Fight to see the light at the end of tunnel. So Kale yeah, I'm on board. Are you?<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-75105408005242448862013-06-26T17:03:00.001-07:002013-06-26T17:03:52.053-07:00Monique, EtcIt's Wednesday afternoon, and Our Heroine is Proudly Watching her amazing Son train for swimming races. She has this week Conquered Setbacks, overcome Adversity, and has braved Many New Experiences. She has Relearned how to continue Forward and not be held back by the Chaotic nature of Life. She says, "Nolite Le Bastardes Carborundum!"Anonymoushttp://www.blogger.com/profile/03200696618595450273noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-75283816536475822982013-06-22T12:28:00.002-07:002013-06-22T12:28:30.276-07:00Jenny- New dreams...New Realities...I'm at a place I could not have imagined a year ago. A place where I can dream and bring those dreams to reality. I have a working heart and we've struggled for so long it was hard to imagine THIS place. I went to a work function with Jeremy this week and NO ONE cold tell under my pretty, lace cocktail dress I hid a secret. A secret maze of scars and a robot heart. I was so amazed and giggled at the thought I can blend in now. I'm so grateful to finally be here. We just moved and I packed all the boxes. I moved boxes. I helped unload and I unpacked everything myself. Being self sufficient isn't something I take lightly. I can make plans now to travel, plans to take the kids to events and introduce them to new things like horseback riding.<br />
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So my new dreams are starting. I played golf with Jeremy this morning and conquered several flights of stairs to go to this awesome driving range called Top Golf. Something I would not have been able to do just 3 months. Heck just 6 weeks ago...I found an amazing gym yesterday and I ran 5 whole minutes. Sure, that doesn't seem like much but to me it was amazing. I was born with a heart I couldn't use and Dr. Mehdi Razavi built me a new heart. He gave me one I can LIVE with. <br />
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This feeling of guilt is something heart patients struggle with and I am no different. You meet people in the hospital and you know which ones aren't going to come home. You vow to never forget them so you always remember to do what you need to do to stay alive. But they haunt you. Wondering about them, wishing you exchanged numbers. I have to tell you about an experience I had a few weeks ago.<br />
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I was attending the Woman Heart Houston meeting where me and an AMAZING, FANTASTIC, group of CANTANKEROUS heart patients get together each month. No, it's not the somber, boring meeting you might think. This is a place where we CELEBRATE each other. We SUPPORT each other, and we understand how the other one feels. I joked with the table when the waiters walked up and told them we wanted as much fried stuff as they could bring to the table. We all chuckled. Then proceeded to order wonderful kale and beet salads and rave about them. <br />
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We don't look back at what we can't do anymore, we talk about all the things we want to do in the future. I met two heart transplant recipients, which was an honor. What a gift to be in the presence of such brave women. We talk about how hard it is to trust that these surgeries will "hold" and we are allowed a brief respite to feel safe. Several of the people there were perfectly fine, then had their aorta tear and they woke up on ventilators with their chests cracked open. I had several rough times but I always knew when I was having surgery. Can you imagine how panicked you would be waking up after emergency open heart or bypass surgery? So today, wherever you are in your life, whatever challenges you face, remember to thank GOD that you are here, alive, and breathing.<br />
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I looked across the table and the lady looked familiar but I couldn't place where I had met her. <br />
She grabbed my hands after the meeting. She look deep into my eyes and said, "I was so worried about you. Did you get your babies back? How are they?" Then it hit me. I choked up and I remember where I had met her. I was in radiology talking to her about my friend's bakery, The Peacebaker, because she makes things heart patients can eat! This was the lady I have often wondered about. She sat in radiology with me wearing oxygen. She was surprised to see someone my age with a bad heart and I explained that I too had been on oxygen for months. I named my oxygen machine "Big Bertha" and refused to address it by any other name. I was there in February getting evaluated for a pacemaker. We laughed as we waited for our echocardiograms. We talked about New Orleans, and food, all the things we can't eat anymore but love. She was a foodie and she was a lovely person. I'm so happy I was able to find her again. I can cross her off my list of people to worry about. Because she's back with me where I can support her in her heart fight.<br />
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So many things came full circle in that meeting. Just feeling loved and supported by this group is amazing. I am so lucky to be alive and able to move now. We're planning a family vacation, something we have NEVER done. We're making plans for summer fun activities and I'm able to celebrate this summer with the man I love and have been married to for 10 years. We've lived more in those 10 years then some people do in a lifetime. I'm so grateful for what we learned about each other in those 10 years, for what I learned about myself. Lessons maybe we would not have learned without my heart being "special."<br />
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So I'm not going to look back with sadness at the athlete I used to be. I'm going to redefine my definitions of things. I'm going to continue to be grateful for my life, for my family, and for my marriage. I'm completely unable to even express how grateful I am to have found a doctor who didn't give up on me. To have friends that rallied around my whole family. To have parents and in-laws that took my children for months at a time. My doctor told other doctors working with him that I would get through the surgeries, that I was tough enough to handle it. He was right. Feeling so blessed. On to our new adventures....<br />
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com1tag:blogger.com,1999:blog-5991635848634690379.post-4973793127278678422013-06-14T11:56:00.000-07:002013-06-16T06:48:27.741-07:00Jenny-10 years ago today we got married....We met because of Anne and Matt. I introduced Anne to Matt and they got married. They thought Jeremy was a great match for me. Jeremy asked me out, (actually he told me he was taking me out) on their wedding day. I drove Anne and Matt from Baton Rouge to New Orleans after their wedding and the entire ride they talked about how Jeremy was the perfect guy for me. They actually said, "He's really short, hilarious, and we think he's perfect for you!" We've been together ever since our first date. We both knew right away that this was serious. Our first date was on my dad's birthday. He made me really nervous, in a good way. Ten years ago today I married Jeremy and I'm still excited every time I see him. We got married at St. Anthony of Padua in New Orleans. In June, in the heat, and I couldn't wait for my dad to come get me out the limo so Jeremy and I could get married. It seemed like the longest 5 minutes of my life waiting for my dad.<br />
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I couldn't get the unity candle lit on the alter and could not stop laughing. I was doubled over cracking up laughing while our priest was telling me to stop laughing. Which only made me laugh more. So the ceremony may not have been complication free but it was perfect for us. That church is so beautiful, cherubs carved into the windowsills, stained glass windows glowing with light. We were both so hopeful about the future. We were blissfully happy and had no idea where life would take us in ten years. So excited to finally be married after 4 years together. Little did we know the path life would take us on. So many great times and so many terrible, scary ones too. 14 bladder surgeries, 9 heart surgeries and 2 kids later we're more in love than ever. Because we truly accept each other.<br />
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The best gift Jeremy ever gave me...<br />
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Some people told me that they thought Jeremy would leave me because I had so many medical problems. (Which is a terrible thing to say in the middle of a medical crisis.) But he always told me, he didn't marry me thinking everything would be perfect. He married me because he loved me and we would get through anything together. He was right. I can't explain what it is like to be totally accepted by someone. But it's more than amazing to know I have someone by my side who loves me unconditionally and will be there to support me until the end. Someone who is even stronger than me, which is pretty darn tough! What an unbelievable gift to give someone to love them despite their flaws.<br />
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No one is perfect. But when you love someone you accept their imperfections. Fairy tale romances aren't real. Life isn't perfect. Life is about rolling with the punches and getting back up to fight another day. My dad used to always say marriage isn't 50/50, it's 100/100. Because if your wife needs something you step up and you take of it, 100 percent. Ten years later I can say my dad is right. Sometimes you have to put in more work than other times but we both support each other 100 percent of the time. Jeremy is my best friend. I have been blessed with wonderful amazing friends, some of which have been around almost my entire life. But Jeremy is the one I want to know all my stories. He's seen me at my worst and I like to think we have our best times ahead of us. With our beautiful kids and my cyborg heart.<br />
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I hear people talking about this "perfect" fairy tale life they are seeking, the "perfect" partner for them. People are not components on a list. We are all human beings which means we are imperfect. But it's about finding someone who has the character traits you need in a partner. We all are going to look the same in a pair of jeans at 80 years old. So superficial looks aren't important. It's about matters of the heart, loyalty, and the true meaning of commitment. For better and for worse till death do you part.<br />
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I never really cared about our wedding. I wasn't a bridezilla. My mom planned our wedding while I was working in Houston and Jeremy and I just basically showed up. The "wedding" wasn't really important to me. The marriage was/is important to me. Choosing the right person to spend the rest of my life was important to me. So lucky to have found Jeremy. I can't wait to see what the next 10 years will hold for us and our family. Thank you for staying with me through everything and making me a mom! Love you always and forever.<br />
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Our babies when they were little</div>
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Our babies now</div>
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<br />Jenny http://www.blogger.com/profile/02536620823013877081noreply@blogger.com0tag:blogger.com,1999:blog-5991635848634690379.post-41437200361664631992013-06-11T19:06:00.000-07:002013-06-11T19:06:00.433-07:00If it can happen to us, it can happen to you!!! Please, please READ THIS, and send any and ALL suggestions to me!!!! <span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;"> When someone else's irresponsible choices hurt you, or nearly kill you, you should be allowed to have some closure. You should be allowed to rebuild your life as best you can with the pieces you have left. On December 31, 2011, My daughter and I were hit in a head-on collision by a drunk driver named Derek Wade Perilloux. He had a BAC of 0.16; 0.08 is considered intoxicated. </span><br />
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At the last court date, the judge told him he would receive 5 yrs., 4 yrs of which would be suspended, and one year which had to be served in jail. Today, however, he received one year house arrest, 3 or 4 yrs. of probation, and $1000 restitution for the over $900,000 of surgeries I've received over the last year and a half. THIS IS UNACCEPTABLE!!! This man has had 4-5 DUIs, but was allowed to plead an article that reduced the charges, so his insurance wasn't informed of his many, many indiscretions. He was also charged with drug paraphernalia possession in 2010, which has somehow gone missing from his record as of today???</div>
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What happened to my daughter and myself can happen to YOU and YOUR CHILD!!! Please imagine for a moment, that this accident had happened to you. You've had 14 surgeries over the last year and a half, you've lost your car and your job as a registered nurse because a drunk driver drove into your lane and hit you head-on. You are struggling financially with the mess that someone else's life choices brought into your life!!! You've lost your home, and your 3 children have been yanked from the only private school they've ever known, to attend public schools because you've lost your job and can't afford their tuition. My life as I knew it, is over. This man was not made to serve ANY jail time for this crime. This was not a victimless crime!!! I've gone to every court appearance to advocate for my daughter and myself, so our story could be told, and this man could be taken off the streets. He doesn't deserve to drive or have a license. He shouldn't e allowed to move on with life as usual...I can't, and my daughter can't!!! </div>
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The judge told him at the last court appearance that he had to serve one year jail time. Today, however, when it was announced he would serve one year house arrest, the assistant DA said nothing to correct it. She stood by, knowing fully well that the judge had said he must serve one year, and did not remind her of that fact. Instead, she stood by while the judge mistakenly charged him with one year house arrest. You are not immune to these events. They can happen to you, especially now that he'll be out on the streets again. The assistant DA did not advocate for my daughter and me, and I will do all I can to ensure that the BAR association is made aware of her misconduct. If anyone has any ideas or comments that might help, please, please email me!!! We must do something to make these people accountable for their actions, or this could all happen to you!!!</div>
Anonymoushttp://www.blogger.com/profile/09262957884781285812noreply@blogger.com0