I Am Congenital Heart Disease Survivor
What does that even mean?
I was born with a congenital heart defect, a structural heart defect, that sent me to have my first open heart surgery at 11 months old. My pulmonary valve was hardened and blood was unable to efficiently make it to my lungs. I also had some holes in my heart, called Ventricular Septal Defects.
Can I say the heart is fascinating? Quick nerdy fact - the SA Node in your heart generates electricity which causes your heart to beat. It's your heart's built in pacemaker. If the SA Node ever became blocked before it can make it down the heart's conduction system, a group of cells that are further down would become the heart's pacemaker!!
A true miracle from God. I mean - God is real.
After my surgery as an infant I was told I was "cured" and fixed and would live to be a ripe old age. Well, that was a lie. Because once you cut into a heart, there is nothing normal about your future. I had about 27 healthy years and then three months after I got married I went for a check-up and left with a referral for heart surgery.
I was a little more than shocked. I was scared.
Having no pulmonary valve (removed from my first surgery) created such a strain on my heart that my right ventricle had tripled in size. I needed an intervention. I needed a new pulmonary valve.
So two months before my first wedding anniversary I went in for my second open heart surgery. Yay. I was terrified. God used this moment to wake me up from a lifetime of struggling with anxiety. In fact, he used surgery to heal my spiritual heart of fear. I would go on years later to write my first published Bible Study about anxiety relievers I learned through this whole open heart thing.
Surgery was difficult. It hurts to get your sternum sawed in half. It hurts to move it, it hurts to breath, it hurts to be awake. I became proficient at pillow origami and watched way too much PBS (#nocable). After cardiac rehab and lots of cookies, I finally went back to work 8 weeks later.
It's been almost 4 years since the surgery and God has blessed me with two beautiful children and normal pregnancies. I will have to have another surgery when that cow valve wears out, but I hope to have a very different outlook.
Here are a collection of a few stories that I wrote before and after my surgery.
A Letter From Dad
[A letter from my Dad when I found out I needed to have open heart surgery]
This isn't the first surgery for my heart, but I was too tiny to remember the first one. A month ago my Dad sent me an email telling the tale of my first open heart surgery nearly 27 years ago from his perspective. This was indeed a sweet gift. I am so thankful for my Mom and Dad who, filled with courage and caffeine braved I-75, hospital rooms, and sleepless nights for their daughter. And they'd do it again.
Email from Dad
November 28, 2011
Get out the tissues.
As your Dad, I remember a lot of things about my life that happened before you were born.
I want to tell you about when you were a baby and how God delivered you, and how he will again.
I was with your Mom during labor at Munroe, and I was in tears when you finally entered my world.
The day after you were born, Dr. Casey told us about your heart.
I took you and Mom every couple of weeks to Dr. Gessner at UF Shands to monitor your heart.
I made the decision with Mom to proceed with your heart surgery when you were 11 moths old.
We were there every minute you were at Shands. We traded shifts.
Mom in Gainesville, then Dad in Gainesville - back and forth.
I think it was 10 days before we could bring you home.
But we did bring you home, and we loved you intensely, and cared for you every minute.
Time erased what happened then. We did a lot of living together. You grew into a beautiful woman.
But as you grew physically, you grew spiritually - in a way that I could not have expected.
It started with Alathea at the Springs Theater. Then it was Navigators at FSU. Then it was Eagle Lake during the summer.
Now you live in Colorado, not because of material pursuits - but because you chased people who knew Jesus.
And through the time from Alathea to today, you have changed hundreds or thousands of peoples lives because you were blessed with faith, and the passion and courage to reach out to people who were lost or broken, or hurting. You stepped into people's lives and told them about Jesus Christ, the ressurection, and personal salvation.
This was God's plan that I did not see when you were born.
God sent you with a purpose - not my purpose - his purpose.
He aimed you to Colorado. He directed you to Andy and his family.
He connected you with hundreds of Christ-following friends.
He is now challenging you again.
The first heart chapter is over. The second heart chapter is beginning.
I saw God's plan come to action over the course of Lauren Chapter 1 - starring Lauren.
I am ready for an even greater experience with Lauren Chapter 2 - starring Lauren and Andy.
I cannot change the pathway to Lauren Chapter 2 which involves getting a new valve for your heart.
I will do everthing I know how to help you get past the beginning of Chapter 2 and into the next great adventure.
I believe that God has a plan for you for Chapter 2 - but I don't know what it is.
With Lauren Chapter 1, God demonstrated that you are a messenger and a teacher of his word.
There are no words left to tell you how much we love you.
I just know that God will bring you through with a life of joy and happiness.
He showed me once already.
Fight For Joy
[A month before open heart surgery]
Advent is here. . .the joyful anticipation of Christ's birth and his return. I love it.
This week's topic: Joy
It's a hard one, joy. Because in the midst of pain and suffering and in the midst of goodness and fun there is to be joy. Joy because Christ reigns. Joy because truth will prevail. Joy because everything is being used to transform us to be more like our perfect Savior, Jesus.
So why do we have to fight for joy? Because we forget why we have it in the first place. Joy is bound to Jesus, yet our hearts seek communion with other things. We stake our territory and fight for our will to be done, all the while forsaking joy.
I have to fight for joy.
Today was so difficult. The approaching surgery is a source of anxiety, fear, and a ton of "what ifs." I find myself in the dark room of Unknown, meditating on the mysteries of what hasn't come. It drives me crazy. I doubt God, I panic, and there is no rejoicing to be heard. Then I fret. How can someone who proclaims the love of Jesus doubt her Savior?! Embarrassed, I tend to tuck in my fears to look presentable to the outside world, when really what's going on is, "What will happen?" "What if I'm different?" "What if I die?" "What if I am unable to recover?" "What if my life capacity changes?"
I have to fight for joy.
Joy says that God is working for the good of those who love him and are called according to his good purpose (Romans 8:28). The good God is referring to is the blessedness of becoming more like Jesus; conforming to him.
I can think of no better opportunity to conform than in the midst of pain, suffering, fear, and anxiety.
I have to fight for joy because in this world there are monstrous surges of not wanting to be like Jesus. Of saying yes to me, to what feels good. Saying yes to what I want when I want it. Ignoring the call to submit to Christ and pretending my tiny acts of service are an acceptable substitute to following God.
I have to fight for joy because joy submits to God no matter what happens. And there are lots of things I do not want to happen.
I have to fight for joy because joy has a grateful heart no matter what happens. And like I said before, there are a lot of things I do not want to happen.
We have to fight for joy.
Today I am fighting. I am slowly and painfully turning from my own desires and submitting to God. And you know what, even though today has been hard, I feel so close to God and there is no where I'd rather be than with him.
With God the fullness of joy is found.
"Rejoice always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18
I Didn't Die
[written after open heart surgery]
My first thought when I woke up from the anesthesia of surgery was, "I didn't die."
Honestly, I really thought this whole open heart surgery was a 50/50 thing. And while statistically the odds were strongly in my favor, I still wondered if I would breath my last on January 11, 2012.
Upon my return home I opened up the Bible to Psalm 40, and there, waiting for me, was a verse. Have you ever had that moment? The second you read over a verse it's like angels start singing and your brain cells start to jump around and your skin tingles? Well, maybe it wasn't quite like that, but I do know God was speaking to me:
"He put a new song in my mouth, a hymn of praise to our God.
Many will see and fear and put their trust in the Lord."
I'm no singer and my iTunes collection is about 120 strong, so I wondered what a verse like this was doing rooting itself deep in my heart. Perhaps it was just a joyful noise at this new opportunity at life post surgery? But as the days unfold, I am realizing it is much richer.
I am reading a book called Redemption-Freed by Jesus from the idols we worship and the wounds we carry by Mike Wilkerson. Usually I skip the introductions in books, because, in my opinion, if it was worth reading it would have a "Chapter" in front of it. Since being married, I am highly encouraged to not skip introductions and after reading this one, I wonder how much I've missed out on in life. Still, if I ever write a book you can expect Chapter 1: Introduction. I digress.
Within these pages I am discovering true worship, renewed worship, and each day a layer of my heart is peeled back and affections for things beside God are revealed. But greater than an exposure is a delightful revelation that humans are created to worship. Mike Wilkerson says, "To not worship is to not live." We worship what we live for and broadcast our affections to this world. It is a constant stream of what we believe, why we get out of bed each morning, what we are really living for every day. Wilkerson says we're like water hoses that cannot be shut off. You can point the water at the grass, the car, the shrubs, but you can't turn it off.
We are worshippers, regardless of our goals, our spiritual beliefs, our political affiliations; we have chosen something to set our affections on and that steady stream of love will not be shut off during our time on earth. Our hearts are singing, projecting love songs to something or perhaps someone.
I am a worshipper. I am constantly choosing where my affections will go. But now God is putting a new song in my mouth, a hymn of praise, and I am humbly learning this new song. And you know what, it's not about singing. . .it's about living.