Sitting on the Sidelines

I hate the game of tag.  Literally hate it.  I hate man hunt too.  That's just tag in the dark and I'm not a fan of the dark either.  When I took my students to the playground the other day and they asked me to play tag I said, in my nicest teacher voice, "No, you guys play, I've got to keep my eye on all of you." and in my head I was thinking, "Absolutely NOT!"

I  watched them play tag, and laugh, and shriek, and chase each other around, and get in to arguments about who was on the base for too long.  As I  watched them running and playing and got involved when I had to set the ground rules for the base; I thought to myself, ' I hate this game!  Why do I hate this game?'

The answer was pretty clear. Because of my Congenital Heart Defect. Because I can't run.  Because I get out of breath.  Because I get tired easily.  Because my body isn't fast enough to get away from the tagger, nor is fast enough to be the tagger! Who likes a game they are terrible at?  Who likes a game that they are incapable of doing?  Who likes a game that reminds them of all the things they don't have and can't do?  Definitely not me.  Instead, I did what I usually do in these situations.   I stood on the side and watched.

So much of my life has been spent on the sidelines watching other people run and jump and play and have fun.  In gym class, in sports, in any activity that requires physical exertion.  I couldn't participate because of my heart.  I had to sit out because of my heart.  I had to take a break because of my heart. If I were trying to make you feel bad for me, now would be the time where you should start.  But I'm not.  At all.  Because I learned something along the way.  I learned that the sidelines are pretty exhilarating too.

Siting on the sidelines gives you such an interesting perspective.  Sitting on the side lines allows to participate in the experience.  Sitting on the sidelines teaches you to observe. Sitting on the side lines forces you to see the whole game. Sitting on the sidelines causes you to get to know people.  Sitting on the sidelines teaches you how to be an encourager.  Sitting on the sidelines can get your heart racing and your blood pumping too. 

Learning that the sidelines had so much to offer wasn't a lesson I learned over night.  There were day where I spent my time on the sidelines wishing I could be in the game.  Eventually, as I grew to accept that my CHD wouldn't allow me to be 'on the field', I made it my mission to make the best of the seat that I could sit in.  I decided that if the only action I would see was going to be from watching, I was going to make the very best of it. 

Growing up, my siblings played sports and I made it my mission to go to every match, meet, game, scrimmage, competition and tournament that I could. If I couldn't be on the team, I was going to be the team cheerleader, team mascot, team score keeper...whatever the team needed me to be.  In gym class I got A's because I dressed out, I kept time, and I encouraged my classmates as the ran the mile or played softball, or climbed to the top of the rope. I made sure the sidelines was just as exciting as being in the middle of the action. CHD was not going to stop me from enjoying myself.  CHD was not going to stop me from having fun.  CHD was not going to stop me from being active and being involved.  To this day, I LOVE to watch...sports, plays, people...clouds. I think that being able to observe all that's around you is a gift. To be able to sit and to watch is peaceful.  To be able to stop and to see is priceless. You don't always have to do things to truly experience them.  Sure, it may not be the same but, with the right mindset, it's just as exciting as actually being a part of it.  

My dad and I  like to people watch.  Airports and fast food restaurants are the best places if you're into it too.  When we people watch we play a game where he asks me how I think the people are related and what they are saying to each other.  I always ask him what he thinks first.  Because I    already know.  I've become an expert observer. I can read people from miles away.  I can look at a situation and pick out details that many people might not notice.  I can look at that same situation as a whole and put all the pieces to gather to understand the whole picture.  If you people watch long enough, you eventually figure out what you're looking at.  When my dad eventually does, he turns to me and says, "I think you're right!" Yes dad, I  know.  I usually am. 

CHD has stopped me from doing many things in life.  But CHD hasn't stopped me from experiencing life in ways that many people will never get to experience.  CHD has taught me that point of view from the sidelines is a unique one.  CHD has taught me that I don't need to go from adrenaline rush to adrenaline rush to feel exhilarated.  CHD has taught me that there is so much value and importance in observing.  CHD has taught me that being able to encourage people is a gift that our world needs more of. CHD has caused me to slow down and to "stop and smell the roses".  Yes, having to "stop and smell the roses" is a way of life for me with CHD.  Thankfully, I love the smell of roses.  

PS: Heart month as ended and I hope you have learned a lot this heart month.  I know I have!  More to come in the next months because I'm working on getting my half hearted self involved with the American Heart Association.  I promise to keep you posted.  Literally...in blog post! (HA!  See what I  did there?  Yes?  No?...Okay...I promise I'm done.) 

Becoming Heart Parents

Throughout out my life with Congenital Heart Disease I have often been reminded that before I started on my own personal journey, my parents had started one of their own.  Without any prior knowledge, their first child was born with a disease that would change so much of what they thought and so much of what they knew.  So many who know them see them as a couple of incredible strength and unwavering faith...and they are!  What people don't always know is that so much of who they are individuals, and as a couple, is because of what they went through as parents of a sick baby.  But instead of hearing about it from me, I thought it best you hear it straight from the two of them. Here's a glimpse of my parent's perspective on having and raising a child with CHD. My momma wrote this for me to share.  Enjoy! 

When I think back on what it was like when we first found out that our daughter had a complex Congenital Heart Defect, my first thought was, "Will she live?" My second thought was, "Tell me everything I need to know!"

It's funny how different people approach a crisis like this differently. Whereas I needed to know every detail, my husband wanted to know just the necessary information. I guess allowing each other to approach this in the way that they felt most comfortable worked well for us. 

My obstetrician came into my room the morning after delivering my daughter to talk to me.  I will never forget what he said to me.  He said, 'It wasn't anything you did." I thought to myself of course it wasn't anything I did!  I never even thought of it that way!  I guess there are those who do struggle with that. Then he said, "Just be grateful it isn't an atresia!".  I looked down at the little piece of paper that I had.  On it I had scribbled the medical terms my husband had told me the doctors had determined my baby had after her first of many cardiac catheterizations. There in scary little letters were the words "tricuspid atresia". It was an atresia!  

This was before computers and smartphones and those words were foreign to me. Being that I was recovering from a cesarean section in one hospital and my new born daughter had been transferred to a "heart hospital" and post-birth hormones... I think it's safe to say I was a bit emotional. 

One thing that I often tell parents who are going through medical crisis with their children is that God gives His grace as it is needed.  You cannot store it up for an occasion like this.  Throughout her multiple catherizations, hospitalizations, echocardiograms, doctor's visits, three surgical procedures, chest tubes, Pacer wires, oxygen tubes and tents; throughout it all; God's grace was plentiful! He surrounded us with family and friends to encourage, support, and uplift us during those difficult days.

I know I was worried from time to time; when she got sick, when she had a fever and her body shook from chills, when that persistent cough turned into a rolling chest congestion, when walking up the stairs became an exercise that that required several rest periods, and when I saw those blue lips becoming apparent even at rest. I don't think I ever panicked but I certainly worried. I also think the deep faith my husband and I shared drew us closer through all of this. We never disagreed about what the next step would be or what doctors we should see. We shouldered the difficulties together.  We were always grateful for the beautiful little girl God had given us the privilege of raising.

As she grew we had to begin to transfer responsibility for taking care of her health from us to her, and honestly that was difficult for me to let go of. I guess I always felt like I needed to make sure that she was taking her medicine and not ignoring signs of impending sickness, etc. My faith and God's grace carried me through that transition as well. 

I do not regret a moment of the journey we have been on. It has shaped me personally.  It has shaped my marriage in some ways, and it has shaped our family as a whole. Life is precious despite what we see in the world around us. Yes, life is very precious! My daughter's life is precious!  And because of what she has gone through and by extension, what we have gone through, I don't think will ever take that for granted.

-Jayne and Gerard

The Best of the Worst

Middle school is probably some of the worst years of just about everyone's life.  It's a time when your stuck between being a kid and growing up.  Your body is changing, your mind is changing, your friends are changing, and you're trying to figure out who you are and how you fit in.  As a middle school teacher, I often find myself hoping and constantly praying against the "worst" for my students.  I ask God to allow me to do all that I can to make their short time in middle school the best for them. And I hope that maybe one day when they look back, they'll remember some parts being good, really good.

The thing about middle school is that in the grand scheme of life it's only 4 years.  4 years and that's it.  Yet so much happens in those 4 years that it marks some of us for life.  It shapes who we become in later years.  For some strange reason we can't remember what we had for breakfast but we can remember vividly moment after moment of our time in middle school.

For me, middle school was exactly that.  It was some of the worst times.  It shaped me who I became.   It marked me for life.  And as I look back, there are some parts that were good, really good.

My middle school started at 5th grade and 5th grade Emily was even smaller than current Emily. 5th grade Emily was scared. The school had 2 floors and I had no idea how I would manage to get to my classes that were on the other side of the building on time.  I had different books for every class.  I had different teachers for every class.  My friendships were changing.  And, for the first time in my life I realized that my heart condition made me strikingly different.  And that was the worst.

No one was else was tired like I was.  No one else seemed to struggle to get through the day after lunch (which was at like...10:30...).  No one else and to sit out in gym.  No one else's backpack was too heavy from them to carry.  No one else was out of breath when they went from the 5th grade hallway to the art room on the second floor on the opposite of the building.

I soon become confused and angry.  I was lashing out at my parents, my sister, and myself.  I fought with my parents to the point where I hated myself.  I lost privilege after privilege at home.  I became anxious and afraid.  I bit off all my nails.   I would have panic attacks about sleeping at night.  I  worried and became afraid about every little thing.  I became miserable.  I wasn't happy with my life, and  I wasn't happy with myself.  I would go to church and sit in worship and just cry.  Asking God to change me.  To heal me.  To make me better.  To make me fit into my definition of normal.  And when he didn't, the cycle of angry and anxiety and fear continued.  

My mom had set out on a mission to fix what she could for me...as heart mom's do.  She spoke with my doctors, my teachers, and my guidance counselors and together they created a 504 Plan for me to ensure that I got accommodations that made my day easier.  I got to be late to class if I needed. I got to bring a water bottle to class and eat a snack in the afternoon.  I got additional copies of my text books and in my future years, my classes were scheduled so that I could have math in the beginning of the day before I become exhausted.  But that didn't change gym class.  That didn't change the fact that I couldn't participate and had to sit on the side and watch the rest of the class.  That didn't change the fact that when all my friends were trying out for sports teams, I couldn't.  That didn't change the fact that I felt like the odd one out.  And despite all these things designed to make my life easier; I continued on my journey of self-sabotage, not only in my relationships but within my self.  I was mean.  I was hurtful. I was refusing to take my medicine.  I was refusing to accept myself.  

I can't pin point a moment of change.  It wasn't a switch that flipped where one day things were awful and the next day they were not. It was a process.  It started after a night of crying about...everything.  My dad said some very simple words to me that changed my perspective.  He said, "Emily, just serve God and everything will fall into place."  At the time I thought, I am serving God!  I'm a christian.  I go to church.  I pray. I read my bible. I share my faith.  I go to youth group.  I go on missions trips.  But after mulling those words over and over for months and quite a few years I began to realize that by not accepting who God created me to be, and how He created me, was preventing me from truly serving Him.  It was preventing me from even fully understanding Him, of walking with Him and having  relationship with Him.  I needed to do what exactly what my dad said and just, "serve Him" and that started with acceptance.  Acceptance and embracing exactly who and how He created me.  

So I decided to make some changes. I started by sticking up for myself. Someone picked on me in 6th grade gym and told me go get new heart.  I had a sassy come back for her. (Not the best way...but I hey, I had to start somewhere!) I decided to no longer sit on the sidelines and be jealous.  I started going to every single one of my sister and brother's sporting events, becoming their number one fans, and even helping out the coaches and the teams when needed.  I decided to laugh about my condition, to make jokes about why I couldn't do things. "Sorry, I can't do that because I only have half a heart." I decided to see the good in the differences.  Taking my test separately meant less pressure and less noise.  Having a snack during the day meant taking a break from class to go eat it. That was always an added bonus right? I started to realize that my parents had their own journey they were on as parents of not one but two children with CHD. Although it didn't change the teenage attitude I had towards them, it certainly changed my perspective of who they were, and why they were that way.  

At times I still felt lonely.  At times I still felt left out.  At times I wished for change and a lot of times I was angry about it.  But I continued to intentionally change my perspective I began to have a deeper understanding of the nature of God.  I realized and I came to truly believe that He makes no mistakes.  That He hadn't had an "oops" when He made me.  He hadn't "done this" to me as if it was some sort of a punishment. He had created me exactly the way I was, with all my imperfections, with purpose and for a purpose.  He didn't want me to spend my life wanting to figure out what was point if I couldn't be normal, but what was my purpose by being exactly who and how I was.  Half a heart and all.  

Can I tell you what an incredibly satisfying feeling that is?  To know that the God of universe made you unique, made you perfectly, and made you for a purpose.  That is an incredible feeling.  It's the best feeling. I look back and see His hands in every part of my life, even at the worst times and in the worst moments. He has never let me down and He has never let me go. He's not given up on me and I refuse to give up on myself and the purpose and plans He has for my life. 

I've shared this Bible story before but it's one of my favorites.  In John chapter 9, Jesus and disciples are walking and come across a man who has been blind from birth.  The disciples, curious minds that they were, wanted to know...why? What happened that this man was born blind?  Did he do something wrong?  Did his parents do something wrong?  What could the reason for his affliction be?  Jesus' answer is simple yet some of the most powerful words I've ever read.  In John 9:3 Jesus answers them,  “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him." Boom. Mic drop. Exit stage right. That sums it all up. My life's ultimate purpose is to display His incredible and powerful works, to bring Him glory, to be a vessel for Him to be seen through, to used to be His hand and His feet, and even be His heart with every part of the half of mine He gave me.  

Don't get me wrong.  I don't have it all down. Not at all.  I'm still very much on this journey.  I'm still discovering my purpose and learning to embrace the unique imperfections in my body that God perfectly and uniquely designed.  There are days when CHD gets the best of me and I have a 5 minute pity party and even hed a tear or two.  Then there are days when I'm loving every minute of having half a heart.  (Usually when I don't have to participate in some form of manual labor and get to take a nap!) Congential Heart Disease is a life long illness, so it's not going anywhere anytime soon.  The journey will continue to change as life changes.  The one thing I know will remain constant is God. He is perfect in all His ways.  I am perfect in the way He made me.  I am living my life with purpose to be the best Emily, the Emily with a half of a heart that He created me to be. Isn't that the best? 

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A Day In the Life

We have made 365 trips around the sun and we are at heart month once again.  I hope you have you red picked out for tomorrow.  (Find out here why you should wear red for women, for heart disease...for ME!)   

Last year I shared so much of my story, and I know that more than just my mom and my sister (and my grandma too) read it.  I shared the facts and a long with some thoughts and some feelings.  This year, I'm going to not to repeat myself and share my story over again.  I'm going to aim for some of more of my thoughts and my feelings.  If you're  thinking "What?! More feelings?! She has so many of them!" I think you're probably right. In fact, I know you are.  But I promise I'll try to keep them to a minimum.  Although, technically it's my blog so I can do what I want. Also technically, it's your eyes so you can decide what you read or don't read with them.  

If you missed my story last year, you can catch read up on it here and here.  To sum it up.  I was born with Tricuspid Atresia and Atrial Septal Defect...meaning, I was born with out a right ventricle and a hole in the wall of my heart.  Many surgeries later, here I am.  30 (and a half) years old and still living with CHD. Remember, there is no cure.  But my life looks a lot different now than it did when I was first born and diagnosed.  For one, I don't turn purple anymore! (Although I think that my students would find that incredibly entertaining if I did.) So, what does life look like for me as an adult with CHD?  Does it effect my daily life? And how?  Well, here are just a few of the things I do and I think about in my day to day: 

• Trying not to let the shower get to steamy or it will be heart to breathe.
• Remembering to take my medication daily.  (And try not to forget if I took it already or not!)
• Being careful not to walk around too much at work.  
• Trying to save my energy for teaching. 
• Remembering to bring a snack. 
• Taking my time walking up flights of stairs
• Humid days are my worst enemy. 
• Always being on the look out for blue lips. 
• Keeping an eye out for heart palpitations. 
• Trying not to over exert at the gym.
• Hills are not my friends. Take them slowly too.
• Sweating while eating. It's strange but sadly normal. 
• Trying to cover my scars with clothing. (I've pretty much given up on that.)
• Putting myself to bed early. I'm not being lazy. 
• Taking a cold or cough very seriously.  

I'm sure that many people have to think about things like this, or do things like this.  I know I'm not the only one in the world.  At times, that brings me comfort; knowing I'm not the only 30 year old who has to check for blue lips, sweats when they eats, and takes her sweet time walking up hill.  At other times, I feel lonely.  I feel like people will stare, or think I'm lazy, or weak. You'd think after living with CHD for 30 years I'd stop caring what others people think of me but having a heart condition doesn't make me any less human. 

What I have learned, is that I have to take it day by day.  That there will be good days and there will be days when having half a heart will take the best of me.  There will days when I wear my scars with pride and others where I  wish they would fade away.  And I've also learned, that in the day to day; no matter what the day looks or feels like; God is with me in each and every moment. God knows what my days will look like before they happen. God ordained all my days before I    was even born. And in knowing all that, I know that I can face whatever the day brings me, what ever CHD brings my ways today, tomorrow, and in the days to come.  

Happy Heart Month!