Wednesday, November 14, 2012

One Month Later...

Well, it's officially been a month. One month to wrap my head and my heart around our trip to NYC and Baltimore, Maryland. I'm sorry for the usual. This year has been for my family and I. For the first time in my life, I find myself speechless more often than not. It's hard for me to put insecurity and fear into words. These days, I just simply feel them. I know they are there. I can sense them at every turn and every decision. There is just SO much more to think about now than there was six months ago. I ache. I cry. I get angry. I laugh in amazement at the wonder of it all. And I try...oh, how I try to not let it defeat me. But, some days it just gets the best of me. And how does it come out? As silence. As thoughtfulness. As me searching and waiting for the right time to pour my heart out. If you've been waiting, thank you for your patience. If you haven't, well, I promise there will be a few awesome pictures of NYC in this post :)

As many of you know, on October 5th, my sisters, my mom and I left for Johns Hopkins in Baltimore, Maryland to learn more about our recent positive diagnosis for the gene that can cause a rare heart condition known as ARVD. We made a side stop in NYC, which was truly the trip of a lifetime! We saw the sights:

Yep, that tiny blimp in the background, The Statue of Liberty :)

The Phillips girls take on Times Square!

The Statue of Liberty from the ferry to Ellis Island.

Faith and I getting educated at Ellis Island.

NYC skyline from the ferry.

My very first Broadway play, Wicked! 

NYC was an amazing experience. I would go back, especially to see another play, but I could never live there. I'm still a small town girl at heart, and at the end of day, I like the quiet pace of my life here in good ole' Missouri. 

After we spent 2 days in NYC seeing the sights and taking it all in, we headed to Baltimore. This is where the trip got NOT so fun, but we survived and we didn't kill each other...which is always an accomplishment in my book! LOL! We spent day one in Baltimore finishing up some testing. Faith and Randi both received cardiac MRI's, my mom had a few doctor's appointments, and then we nosed around the city a bit. The next day was our meeting with Dr. Caulkin, the heart specialist at Johns Hopkins who specializes in the diagnosis and treatment of ARVD. He met with us all in a tiny room and delivered his thoughts on our EKG and holter monitor tests that we had done at home before we came out. He said that all of our test results were okay. There were some rapid heart rates and arrhythmia, but he seemed positive that if we all would take a proactive approach to this disease than there wasn't any reason we couldn't all live long happy lives. 

Granted long happy lives means we will all have to give up any form of strenuous exercise. No more running, women's volleyball league, and I might as well forget about that gym membership I was considering. We also monitor our heart rates a lot more now. Some of it is mental, I'm sure, but I'm definitely more aware of how I'm feeling and the toll that stress truly takes on my body. There are certain medications we can't take anymore, and for the rest of my life an EKG and holter monitor will be apart of my yearly check up. Deep breath. These things may not seem all that life altering to you, and they probably aren't. But, that's where the insecurity comes in. I have NEVER thought about dieting and exercise more than now because I am no longer able to exercise. I have this irrational fear of becoming morbidly obese, and for the first time in my life I have started to worry about calories. Thankfully, I have been blessed with my mother's great metabolism, but I know as I get older, I will have to think more and more about how to maintain a healthy weight now that exercise is out of the question. It's overwhelming to go from never giving something a second thought to having it ever present in your mind everyday. 

I also worry about Emma, now that I have been diagnosed as a carrier of this gene. Emma will have to be tested for it when she's 13. I find myself worrying about things like:

"Should I allow my child who may have a rare, genetic heart disease to play sports?"

"What if I encourage her to play sports, and then I have to make her quit if her diagnosis comes back positive?"

"Should I encourage her to play less strenuous sports like golf?"

"How do I give my child a happy, well rounded childhood without endangering her health or encouraging her to love something I may eventually have to take away from her?" 

I mean, these are the things that go through my mind almost every minute of everyday. My ultimate concern is for Emma, and how this could possibly affect her life. I know your not supposed to borrow trouble, or worry about things that are out of your control, but sports were an important part of my childhood, and I can't imagine not giving Emma the opportunity to enjoy them. I feel very torn. Plus, I have had to watch my sister, Faith, struggle with giving up the sports she loved because of this disease. Sports are a popular way to make friends, and "fit in" during your middle and high school years. I know there are other clubs and activities, but sports teams are by far, the most popular. I have hated watching Faith struggle with this transition and I think about one day having to watch Emma struggle with it. It sucks. 

So, while it isn't as life altering as cancer or other genetic diseases, these are just a few of the ways it has changed my life. I worry. I think about things I never thought about before. I am overtly aware of my body these days. Sure, it may not seem so bad to an outsider looking in, but for me, it's a struggle. Another weight I am forced to carry. My heart is heavy, and I worry more about watching one of my sisters becoming sick like my mother more than I worry about myself. I hate it for them. For us. But, the more I think about it, the more I realize God's unique plan in giving me 3 sisters to carry this load with me. He definitely knew what He was doing when He gave me my own built in support system, and for that, no matter what life throws at us, I will always, always be grateful. 

After our emotional stay in Baltimore, we boarded the train and made a side stop in Washington D.C. I am a huge history buff, so I truly enjoyed this leg of our trip. It was amazing to see so many historical monuments and take in a piece of country history, especially so close to the election. 

The Capital Building

The Jefferson Memorial 

The Washington Monument

The trip home was long, and I have never been so glad to be at home in my own bed. After a few days at home, and once I got over my extreme loathing for train travel, I was able to look back on that week with my mom and my sisters with a smile on my face. Who knows, that may very well be the last time we all get to take a trip like that, and I will forever be grateful for the memories. 

That trip changes us. It made us stronger, wiser, and more aware of the days ahead. We will never be the same. I'm not sure where we are supposed to go from here, but my mom has encouraged all of us to keep living, and that is exactly what I plan on doing. I plan to take each day in stride and be more thankful for every breath. I want to live my life to the fullest and embrace every opportunity to find happiness throughout this journey. God has blessed me with some of the most amazing people to walk this journey with me, and I will never take any of them or the part they have played in my life for granted. Depsite everything, I AM blessed, and I have so much to be thankful for. These are thoughts I try to keep in the front of my mind, because these are the thoughts that have helped me fight back the darkness and defeat. I was given this life for a reason, and I have every intention of really, truly living it to the fullest. 

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