5 Things You Should Stop Saying to This Congenital Heart Patient

I planned a recent trip full of fun for myself. It was going to be an epic adventure and my first time traveling since moving home. For those of you who don’t know, I plan BIG! I love a good soul searching adventure and consider myself to be a nomad at heart. So of course I planned a trip that had me sailing the waterways on my annual trip with my uncle and cousins, road tripping to spend the week with my sister and traveling by rail to see my two besties in Portland. After hour 2 of the sailing trip, I realized that I mistakenly overestimated where my energy level was.

5 Things You Should Stop Saying to This Congenital Heart Patient        5 Things You Should Stop Saying to This Congenital Heart Patient

Our first night on the boat was our traditional “first dinner” at the dock with my cousins and their friends. While those that know me and are a part of my support system know a lot about congenital heart defects, those that don’t tend to ask a lot of questions. Don’t get me wrong, I don’t mind telling my story and answering questions….but some questions/statements have started to strike a sour chord with me.

5 Things You Should Stop Saying to This Congenital Heart Patient        5 Things You Should Stop Saying to This Congenital Heart Patient

While there is a large community of people living with congenital heart defects, it is not largely publicized like many other health issues. That is why I love advocating and teaching others about congenital heart defects. I don’t want people to stop asking questions. However, after the dinner, I had a weekend out on the water to reflect. I came up with a list of things that, as a heart patient and a Christian, I could go another lifetime without hearing.

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Starting point…

I’m officially moved home! Scratch that…all my stuff is down in one location now. My parents are continuing to help me sort through everything and we are now playing the puzzle game of how to merge everything into my room. So we now find ourselves at this starting point of sorts. I thought it would appropriate to give everyone an honest look at what my “starting point” looks like. I want to document everything and so even though I am NOT comfortable sharing my weight (I’m a lady!) or other medical facts, this journey won’t make sense if I don’t paint a picture of what a very tired congenital heart patient looks like.

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Yes, that is what I look like very tired. (what, you think I was going to post an ugly photo?! LOL)

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My “control” funeral…

I’ve been trying to anticipate what emotions I would have when I started this “journey” and to be quite honest I thought maybe I would have a lot more excitement or feel like I was on the verge of something big. What I didn’t expect was to be mourning the loss of all my control. I am a woman of faith, so I know the phrase “Let go, Let God.” However, I don’t think people talk enough about what happens when you decide to do that.

When you are sick your whole life, you find the things around you that you can control…you become indepedent where you can and you try to make sense of why its happening to you. My independence has been so important to me, because I knew if I still had that my illness hadn’t gotten the best of me. So I have been “controling” things and hanging on to that last shred of what I can….my career, my home, living alone. You don’t want to ask for help, worried that you will become to much or a burden on those you love the most. So, needless to say this transition I am in at the moment goes against that all.

This last week I have been withdrawn, moody and crying sometimes at the drop of the hat. I woke up early the other morning freaking out, having a panic attack and my parents did what came naturally to them, they thought back to when I was a child and went with an old standard method. Drive her around until she falls asleep again. I woke up an hour and half later on a gravel road somewhere, my parents still driving me around. First, thing I noticed was the views…

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Needless to say this plan of attack by my parents was exactly what I needed and my head was in a much better space. Then it hit me, I am greiving. I am mourning the loss of my control, my walls, my independence. My mind is having to really “Let Go, Let God” and my grief is raging a war. So I’ve decided to do this right and I’m holding a funeral for my “Control”. Some of you might say this is a morbid way of looking at it…but instead of pushing back what I’m feeling, I’m allowing myself to grieve and move on. In order to heal I know that I need to change what I have been doing, but that doesn’t mean I shouldn’t acknowledge or be sad about what I’m giving up. So here it is…my “Control Funeral”…(cue the sad music)

I will miss my apartment and miss living alone. I will miss my program and my career I have built up here. I will miss living next to my two best friends. I will miss my church.

I am angry that I can’t get better right away. I am frustrated I have to rely on others and can’t do this on my own. I’m angry I have to leave my program and not be there to help it grow.

I’m sad that my life isn’t what I thought it would be at 34. I’m sad that I’m leaving this chapter of my life.

So I have put it all out there. I’m lamenting and letting myself feel every one of those things, so I can move past it and foward. I still believe this is what God wants me to do and I know that there are amazing things just around the bend. This week will be a bit of a test, saying goodbye to so much…but I continue to pray for strength and courage to continue down this trail.

Thanks for continued support and listening to my View from the Recovery Trail…

Love you all!

 

First Steps…

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Am I really doing this?! Am I about to quit my successful career and move home with my parents, all in the name of healing and change?! I’m 34 and for the last 12 years I have been dedicating myself to improving the lives of people. I was born with a congenital heart defect and spent my childhood in and out of the hospital for various open heart surgeries, tests and procedures. I knew that God has wanted me to use my struggles and my story to encourage and help others. So instead of letting my heart problem stop me, I used it as a way to reach others and devote my time to serving them. Then two years ago my health started to decline and every day turned in to this struggle between being there for my job or making it through the day. My medical team started using old familiar phrases like “We don’t know how to make you better” or “We are waiting for science to catch up to you.” However, this time the phrases didn’t fall on the ears of a 16 year old who still lived at home, but a woman still dedicated to her career and her independence. Then after 5 hospital visits,a very embarrassing and scary incident of being shocked by my defibrillator during a meeting, I realized that I couldn’t do this anymore on my own. It was humbling to call my parents and say the words “I need to come home.” I had been praying, crying out and asking for direction…and it came…on a drive home, after a long day at work. I knew that in order to start living again, to really heal, I would need to drastically make some changes. I didn’t want to be just a sick person struggling, but I wanted to really be alive again.

This brings us to the now…the part where I stop working, move back to my hometown to live with my parents and start focusing on healing. I want to be the old “Kimmie” that people knew, have energy to be the world’s #1 Auntie and to live again. I’ve had many adventures so far in life, but I know this is the craziest thing I have ever chosen to do. I know this is the direction God wants me to take, so I am going for it. I decided to start this blog not only as a way for me to process this new adventure but to continue to reach out to others.

My recovery trail will be long…it will be tough…it will be humbling…it will be exhilarating…

but I know it will be full of love and laughter…it will change my soul…it will bring me back.

So I hope you all enjoy my View from the Recovery Trail….

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