Sometimes

Sometimes the day is exhausting.  My list of things to do feels so daunting and everything is overwhelming.  Even the fact that my hair just will not look cute in a messy bun.  

Sometimes I feel so small in a world that is so very, very big.  I wonder if the tiny part I'm playing is making a difference.  Are my words and my actions part of the solution?  Or I am simply adding to the problem? 

Sometimes I feel physically heavy and I need a way to let it out, to blow of steam, to release all the thoughts and emotions I am feeling all at once.

Sometimes, I put on my pajamas and let my fingers dance on the keyboard in an attempt to get the words in my brain out of me and onto the screen before me. I wonder if the words I have to say should be kept between just me, myself, and I, or if sharing them will be worth the effort it took to get them out.  

Sometimes I have to inspire myself.  I have to talk myself up. I have to give myself a pep talk...a reminder of all the things I am and can be and can do...and all the things I will be and will do. 

Sometimes I have to speak sternly.  Other times I can speak softly and gently to myself.  

Sometimes I have to catch myself before I spiral.  I have to unwind my self and get myself back on two feet.  Balance Emily, balance. 

Sometimes I let myself cry; for no reason and for every reason.  It's cathartic and it's self pity and it's frustration and it's injustice and it's hurt and it's healing.  All at once.

Sometimes I huff and I puff and then I let out one long, deep breath.  I listen to the expanding and shrinking of my lungs and let it my own signs of life soothe me. 

Sometimes I walk myself down memory, the good and the bad.  The pictures are all so clear in my head.  The sounds, the smells, and every feeling.  

Sometimes I day dream about the future and plan it all in my head, down the littlest of details.  It seems silly and it seems confident too. 

Sometimes I feel guilty and I apologize to myself.  I'm sure I need to apologize to more than just me. 

Sometimes I'm proud and I give myself praise for a job well done.  Congratulations.  I've made it through this day, this hour, this minute...

Sometimes my heart starts to race with worry and I am certain it's going to beat right out of my chest.  Or if nothing else, it's certainly going to explode.  

Sometimes I can rest so well and my breathing is slow, and deep, and steady, and my heart beats almost as if it wasn't working as hard as it is. 

Sometimes I remind myself of all I've been through and allow myself to use it as a reason to do or be less than...just for a moment. 

Sometimes I am impressed with myself for all I have accomplished with all the limits that have been placed on me.  But I know there are so many who have it much worse than me. 

Sometimes I get lost in wondering "what" or "if" or "why" or "when".  Those can be full of worry or fear of full of beauty and magic.  

Sometimes I focus on all my energy on being in the moment I'm in.  I won't get it back.  I won't get another like it.  I want to remember that one.  And this one too 

Sometimes I wonder what it would be like to look or feel or be someone besides me.  Taller.  Smaller.  Blonder.  Greener eyes.  Quieter.  Smarter.  The list goes on...

Sometimes I don't feel woman enough, empowered enough, strong enough, brave enough.  At least not as much as I sometimes pretend to be. 

Sometimes I feel as though I could take on the whole wide world...and win. 

Sometimes I fully embrace being me.  The many, many thoughts.  The incredibly deep feelings.  The past, the present, and looking toward the future with hope and excited anticipation.  

Sometimes I run out of words and out of thoughts.  My fingers slow down and I realize that I feel lighter, brighter and somewhat free. 

Sometimes All the time I know, I boast in, I have confidence that I have been fearfully and wonderfully made by a God who loves and is with me and fighting battles for me all the time.  

My victory over all of the many 'sometimeses' of life has already been won.  Because of the blood and the name of Jesus.  

The exhaustion gives way to rest in the arms of grace, mercy and love of my Savior.  And I am feeling whole again. 

Why I Wear Red

HAPPY HEART MONTH! Today is the beginning of an entire month dedicated to the heart!  Heart health.  Heart disease awareness.  Heart disease prevention.  Supporting, encouraging, and remembering those who've lost, those who live with, and those effected by heart defects and disease. 

Today the American Heart Association has made the day National Wear Red Day.  Across the globe, people are wearing red for some of those same reasons. I will gladly, proudly, and boldly wear my red for ALL of those reasons.

29-ish years ago, I was recovering from my open heart surgery, my final surgery of three major surgeries.  I had been born with no right ventricle and several holes in my right atrium. The shunts they had put in to try and alleviate some of the problem weren't doing their job any longer. I wasn't even able to walk up the stairs in my house without having to stop several times and catch my breath. The surgery "corrected" the congenital heart defect I was born with before the strain of trying to living with one side of my heart working damaged the parts of my heart I had, before my body began to feel the effects of the lack of oxygenated blood, before my other organs began to try and compensate for the fact that my heart wasn't doing its job. 

Bits and pieces of that time in my life are still vivid and clear in my mind.  Others are a bit hazy as if I am watching them from the outside, like in an old home video.  As a little girl I was confused, I was hurt, and I was angry.  So much of my energy was spent in trying to understand and trying to be something I could never and would never be.  As a teenager, that anger and frustration was deflected on to the people in my life who loved me the most.  My heart defect was no longer causing damage, but I still was. 

My perspective began to shift in the winter of 2006 when my family took a trip to Boston for a college visit for my sister.  We went back to Boston Children's Hospital, which is where my open heart surgery had taken place.  The hospital had changed a lot but some of the nurses on the cardiac floor where the same ones who had cared for me when I was there.  The nurse took us to meet a little boy who had just had the same surgery I had had all those years ago.  There he was, tubes and wires everywhere, monitors beeping and machines keeping track of his signs of life.   His mom, looking tired and exhausted, was brushing the hair on his head and stroking his cheeks in all the places the medical tape and wires were not.  The nurse called her out and introduced her to me, telling her that I was patient here years ago, and had the same surgery her son had just had.  She explained to her that I was 18 years old now, healthy, and in my first year of college.  The mom touched me face, told me I was beautiful, and just cried; glancing back at her son through the window. 

I saw all that I had been through in whole new way that day.  I saw my parents in the little boy's mother.  Standing by my side through every single moment, worried and exhausted but praying over me every prayer they knew how to pray.  I saw myself in that boy.  Wires, tubes, machines, completely helpless to how my body was born but so ready to fight.  In that moment I was no longer angry.  In that moment I understood.  In that moment I was completely one hundred percent okay with having a congenital heart defect.  In that moment I thought that if meeting that mom, and seeing that little boy, was my sole purpose in life, it had all been worth it.  And from that moment on, I embraced my heart defect.  From that moment on I wore my half of heart and all that I had been through as a badge of honor and with incredible pride.

So today, as I kick of Heart Month by wearing my red, I have so many reasons to wear it.  I wear red for women who fight against and fight to prevent heart disease each and every day.  I wear red for the 1 in 100 babies born with congenital heart defects, fighting alongside those who are surviving and in honor of those who don't.  I wear it for the little boy I met when I visited Boston Children's, whose name I don't even know, and for his mom who stood firmly by his side through all of it.  I wear read for Brady, a little boy who spent his days in the hospital making friends and reading to and writing notes to baby me after I had my first surgery.  I wear red for Kayla, my roommate during one of my many hospital stays whose family we lost touch with over the years but survived some complications she had a few years after her surgery.  I wear red for Carol and her son Kevin, she's one heck of a heart mom and he's one heck of a heart warrior and both of them have been huge inspirations and incredible friends.  I wear red for my sister, who shares an open heart surgery scar with me and whose healthy heart does everything I can't for the both of us. I wear red for my parents, who have walked through every single step of my CHD journey with me and continue to be my biggest cheerleaders in all aspects of my life.  For all those people whose lives have been forever marked, forever changed, and forever enriched because of person with heart disease or a heart defect. For all those doctors and nurses and technicians and researchers who help to ease the difficulties and search for a cure for heart disease and heart defects.  For all those who can put their hand on their chest and feel the 'thump-thump, thump-thump' of their beating heart. That's why I wear red.

What about you? 


Happy Heart Month!

-Emily

PS: If you have a heart story, or know someone with a heart story PLEASE reach out and share!  I LOVE connect with those who wear their red for a great reason!

Flowing Through My Veins

Do you ever think about your veins and what is flowing through them? Do you ever think about how they give life to your entire body?  From the tippy top of your head down to the soles of your feet.  When we go to the doctor we either hear  "You have good veins!" or "You have bad veins".  Some of us pump stuff into them, like vitamins and nutrients, and other times medicine like chemotherapy, and sadly sometimes things that can cause you bodies serious damage.  Do you ever think about what is flowing through your veins? 

We say things like "It's in my blood" when we talk about things like the sports team we root for or the reason we act or think a certain way.  When we get angry, and we say things like "our blood is boiling" we literally feel hot all over as if hot blood is running through and spreading all throughout our body.  When we are cold or sad and maybe he even when we are dehydrated, we can see them through our skin and we notice how blue they appear.  Do you ever think about what is flowing through your veins? 

There is a song by Christian Worship Leader Chris Quilala called Miracles.  It's an amazing song but one line brings me to tears every single time.  The line is simple.  It states "The One who put death in it's place/His life is flowing through my veins/His life is flowing through my veins." If you've ever wondered like me, what is flowing through your veins, Chris Quilala just answered you question.  Jesus.  He is.  The God of the universe.  His life.  His life is through through your veins, through my veins, from the tippy top of my head down to the soles of my feet. His life is flowing through my veins. 

I have a love/hate relationship with my veins.  I feel like most people who have heart disease do.  I need those veins to do their job and do it right because the parts of the heart that are functioning properly are counting on them.  I'm constantly hoping and praying they do what they are meant to do, and do it right.  But His life is flowing through my veins. 

My veins have had more needles in them then I care to count, more fluids pumped into them than you can imagine, and more blood taken from them that I'm honestly shocked at how I still have any left. They have been collapsed, bruised, relentlessly poked and prodded, yet they somehow still manage to do their job. But His life is flowing through my veins. 

I worry they will quit on me, or that my heart will quit on them and then they will have to quit too.  I worry that if I get sick it will flow through to my heart.  I worry when I get a cut that I'll get an infection and it will flow through my veins and damage my heart.  I worry that one day I'll have to pump them full of medicine that will weaken them again, bruise them and make them collapse. But His life is flowing through my veins. 

John 1:12-13 says,"Yet to all who did receive him, to those who believed in his name, he gave the right to become children of God-children born not of natural descent nor of human decision or a husband's will, but born of God." and Romans 8:11 states; "And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of his Spirit who lives in you." and 1 John 4:4" "You, dear children are from God and have overcome them because the one who is in you is greater than the one who is in the the world." His life is flowing through my veins. 

He has created me in His image. He has given me life. He has called me daughter. He allows spirit to reside in me. He has given me hope through his promises. His life is flowing through my veins. So if my veins are strong, His life is flowing through my veins.  If my veins get poked and become a little bruised, His life is flowing through my veins.  If my veins bring my blood throughout my body, His life is flowing through my veins.  If my veins grown weak and start to quit on me, His life is flowing through my veins.   

The fact is, it has far less to do with what my veins are or are not doing, but what my God is and will continue to do.  When He made me, He knew full well what my veins would endure. He knew my veins would have to be strong, even at their weakest.  He knew that they'd face pain, and be bruised, and even collapse at times.  He knew it all and He knew what he was doing.  He did it with love and with such purpose and perfection, because He knew whose life he was going to flow through them. His.  His life.  His life is flowing though my veins.  I no longer have to wonder. 

-Emily

Miracles

Reflections

2019 has officially been around for a entire week.  Congrats.  51 one more of them to go.   So far, this new year still has me filled with excitement for what's to come.  I'm off to a good start on my new year's resolution of giving up Diet Coke.  It was killer when I had Chick-Fil-A the other day, but I did it!  (Who knew there were other beverage options?) So far so good but check in with me in a few weeks. ;)

It struck me in 2018, that I've been living, I've been alive, with only half of a heart for 31 years.  It's crazy to me to look back on not just the past year but on the past years of my life.  Often times in life, things that people take for granted, things that are 'no big deal' are a very big deal for me.  Things that as a little blue and sickly baby, people doubted I would ever be able to accomplish or do.  Navigating life with a heart defect can complicate things, but the drama queen in me loves the extra dose of spice I bring to any given situation.  Here are just a few 'big deal' deal things that I accomplished and experienced in 2018.  

Beat Altitude Sickness and Explored the Wild West

I'll start out by sharing that in February of 2018 my baby brother was deployed to the middle east.  Being a military family is no joke.  I thought my prayer life was pretty good until my brother was sent overs seas. Whoa.  Not only did his deployment greatly increase my prayer life, but it also ruined our Easter plans to visit him.  It was difficult for the rest of us (my parents, sister, and I) to think about all being home without him.  So, we didn't do it.  Instead we all few to New Mexico (the state-not the country) to visit my aunt and uncle and to explore the western part of the U.S.  New Mexico is called 'The Land of Enchantment' for very good reason. It's stunnnnnnnnning.  It's also very, very high above sea level.  Oxygen deprivation is a real thing when you have a half a heart, even at sea level.  So you can imagine how real of a thing it is when the elevation is far, far, far above sea level.  Toss in some mountain and mesa climbing and you're in for a real oxygen deprived treat.  My mom checked on me with her "How ya doing Em?",  every few minutes.  And my dad said, "It's okay Baby. We all need a break.",  every time I apologized because I needed to slow down or stop.  But I did it.  We did it.  The girl with half a heart climbed mountains and mesa's in New Mexico.  The view at the top, was so incredibly worth it. The satisfaction at the top was worth it too.  The feeling of euphoria that says "I can do anything!" was wonderful as well.  Or perhaps it was just the lack of oxygen to my brain?  We'll never know.  Either way I don't regret a moment of catching my breathe.  The views took my breath away anyways.  And so did my sister when she dangled her legs off the edge of the cliffs.  

5 Hour Wait for 5 Minutes with the Doctor

My yearly check-ups are getting old.  At least for me.  At this point in my life with CHD, I could probably give myself an EKG and do the Echocardiogram by myself.  When I go to the cardiologist,  I have two choices.  I can be afraid they're going to find something wrong or I can find the joy and gratitude in being "same old, same old".  This year I choose to do the second one.  And God sweetened the pot by giving me some things to laugh about. (Looking back at least.  At the time I was pretttttty peeved.) Things like, when the Echo technicians spent an extra 20 minutes looking for blood flow to the right side of me heart.  Umm...you might there forever looking for it because, it's not there.  The Fontan Procedure I had done when I was 3 took care of that...but thanks for trying to find it more me.  Or like when the Cardiology Intern (Fellow) tried to convince me that I needed to go off my heart medication and take a daily baby aspirin.  Ya know pal, you may have a medical degree but if you read my chart you can see that for 28ish years this half heart of mine and I have been getting along just fine so don't come in here and try to change things up on us after knowing us for .5 seconds. Thankfully when the doctor came in for a whopping 5 minutes, he assured me that the right side of my heart was still non functioning, that I did not need to change my medication, and that he'd see me next year for the another"same old, same old".  My yearly cardiology visit is the one and only time I am completely happy with being completely boring. 

International Travel and Walking where Royals Walk

Before I went away to college, I was afraid.  I'd never been that far away from my parents, my family, my doctors for such a long period of time.  It was hard for me to go and hard for my parents to let me.  It was only 3 hours away and since then I've been blessed with numerous opportunities to travel across the globe.  However, every time I've traveled internationally it has been with one or more family members.  Every time expect for this past August.  In August I traveled out of the country by myself for the first time. And I made it there and back again. (Yes, like Bilbo Baggins. And probably about his height too.)  I traveled across the big pond we call the Atlantic Ocean to Scotland to visit one of my friends from college who lives there.  And it was pure magic.  It was so nervous going there that I slept for about 5 minutes on the plane and about 3 minutes in the airport during my layover.  Once I got there, instant relief and satisfaction in myself for doing it.  For doing what I could have left fear, could have let CHD, stop me from doing.  I enjoyed every second of exploring Scotland and every second of spending time with my friends. I walked miles around the medieval city of Edinburgh on very little sleep and extreme jet lag and I'm so thankful I did.  I traveled to the Scottish Highlands and searched for the Nessie the Lochness monster.  I tired haggis and ate the most delicious fish and chips.  I checked so many places and experiences off my bucket list.  It was a short trip but it was an incredible one. When living life to it's fullest is something you aren't sure you'll be able to do, you take every opportunity to what you can, when you can.  I'm so glad that I canned I did.

I'm a Survivor

Yes. That's a Reba McEntire song.  And Destiny's Child too. (#mymommataughtmebetterthanthat)  It's also the incredibly overwhelming feeling that I had in September when I volunteered with the American Heart Association at the Triangle Area Heart Walk.  I had my heart shirt on.  My mom likes to get us sarcastic/humors shirts for Christmas and she's run out of teacher shirts to get me. A few Christmas she got me a shirt that has a picture of anatomical heart and it says "I'll always have a place for you in my right ventricle." (Jokes on you though,  since I don't have a right ventricle...and those echo technicians apparently.)  Some people read my shirt and looked confused.  Others read my shirt and laughed but one lady came over with her toddler in her arms and said, 'Him too!'.  I looked at the adorable little boy in her arms and noticed he had an oxygen tube in his noes and several wires that ran under his shirt. I smiled at him and reached my hand out to wave at him. He smiled back and me my eyes welled up with tears.  His mom was looking around at the information on the table in front of me and once she was done, walked away.  If she saw my eyes watering I hope that she knows that it wasn't out of pity for her son.  I know how frustrating it can be when people pity you.  It was because all of a sudden it hit me.  All of a sudden I realized I was surrounded by people, of all ages, or all genders, who were survivors.  Survivors just like me.  Just like her son.  I don't meet many people who know much about the ventricles of your heart, and even less people who know what Tricuspid Atresia is.  I've meet even fewer who have a heart defect and are living with it like me.  But there, in front me was a beautiful little boy who knew.   And if I searched hard enough in that arena, I could have found hundreds more who knew too.  Never in my life had I been surrounded by so many people who knew.  Really, truly knew.  The feeling in that moment is one that I will always treasure in my little half a heart. Together we are still fighting.  Together we are still searching for a cure.  Together we are surviving.

There were days in 2018 that felt like good gut punch.  Other days, I was wishing they would never end.  Regardless of what the highs and the lows of 2018 were, they were moments where I learned (and probably definitely relearned) some valuable lessons.  Moments where my faith was weak alongside moments that caused my faith to increase.  Times where I cried out to God and felt like I wasn't getting an answer, and times when I saw God's hand so clearly.  There were days that my CHD got the best of me and knocked me on feet.  Days when the humidity was so high I couldn't breathe and even ice cream didn't help.  (#summerinthesouth) Then there were days where I beat the odds.  Those days are more frequent.  Those days are the days I'm so grateful for.  Those days are the ones I'm excited for more of in 2019.  2018 saw me travel, saw me learn, saw me grow,  saw me dream, saw me victorious, saw me survive.  And that's what I choose to remember.  That's what I choose to take with me into 2019.  To fuel me forward on the days that I'm convinced I won't make it.  To push me on those days I feel like I can't push myself anymore.  Every day is another chance; another opportunity.  Every day is another day of beating the odds.  365 of them. 

Bring it on 2019. 

-Emily

PS: What did you accomplish in 2018?  What odds did you beat? What are some of your 2019 goals?  Any exciting plans?  Leave them in a comment below!