(photo credit Kate Krivanec)
Let me just start out by saying, I absolutely loath congenital heart disease.
I hate seeing what these little babies have to go through and I hate that I can’t trade places with my son. That being said, congenital heart disease has made me the best and strongest version of myself. I am a better mother and wife because of congenital heart disease.
I know it’s odd to hear someone say they are thankful for such an awful thing, but hear me out.
It has brought me closer to God, but it took a while to get there. I grew up the type of Christian that only went to church on Easter and Christmas. That’s changed a lot now that I have children of my own. I want them to grow up knowing God on a personal level. I never got that so when our world came crashing down the day of our diagnosis, it was a sink or swim kind of a deal, and in the heart world, there is no sinking.
I knew I would be no good to my unhealthy child if I was broken and depressed. I prayed for strength and grace to get through this. I prayed to be the kind of mother that this child deserved. I prayed that God bring my new husband and I closer and be the strong united front that can tackle anything CHD throws our way.
It hasn’t been easy. There have been some BIG curve balls thrown our way that I hate to admit, put a dent in my faith for a second. When my son went into cardiac arrest the first time, I was angry. Why? Why did my precious one week old baby have to be revived? I mean, if God was punishing me for something, then punish ME, not my baby. But then he was brought back to life and I was so thankful.
So imagine how mad I was when he went into cardiac arrest again a week later. Anger doesn’t even begin to describe it. So I prayed to God to help me through all my emotions and to help me because even though I knew in my heart that it wasn’t God that did that to my baby, I knew he could help me out of it and not direct my anger at him and help me conquer my mind from the evil thoughts that swarmed around.
I didn’t want to be angry with God. When we got the news that after the second cardiac arrest that there was absolutely no sign of brain damage, I knew that was God answering my prayers and telling me that He’s got this. Ever since, I have completely handed over my life to God. I’ve started actually studying the Bible. My husband and I joined a new church and have felt closer to God than we ever have before.
CHD has taught me to love deeper. My husband and I had just gotten married the week before we found out about my son’s heart condition, so it’s safe to say we never got a honeymoon phase. Fun fact- we found out THE MORNING we were leaving for our honeymoon. Starting your marriage out with such tragic news about your unborn child is again, a sink or swim kind of a deal.
Let me tell you, when you see your husband lean over a NICU pod and gently stroke your baby’s face and shush them back to sleep, you fall into a deeper love than you knew existed. When we took our vows, I knew we would have problems because what marriage doesn’t have problems? I had no idea that our lives would be shaken this much but that man has humbled me. He has been my rock every step of the way and I can only hope I have been that for him.
Along with loving deeper, it teaches you to not take small stuff for granted. I know that is such a cliché thing to say but it’s true. I cried when I got to hold my son for the first time at a week old because I didn’t know if I would ever get that moment. I cried when he peed on me for the first time because again, I didn’t know if I would ever get that moment and for the first time I felt like a REAL mother. Every single milestone is a punch in CHD’s face.
I have the honor of knowing many heart moms that never got those milestones because their beautiful heart warrior was called home to Heaven. So when Colston hits a milestone, I think of them. I think of how blessed we are to be here and thank God immediately for giving us this moment and say a prayer for the families that never got that milestone.
I have met so many other heart parents and have made some wonderful friends. Our hospital was 8 hours from home. The Ronald McDonald House helped us tremendously feel like we weren’t so far away. It truly was a home away from home. There were about 14 other families there and out of those, about four of them were fellow heart families.
We have laughed together, cried together, and prayed together.
In the beginning of this journey, you feel alone. I can’t speak for other heart parents, but for me, I didn’t know a whole lot about heart defects before my son was born. In fact, I didn’t know anyone that had a child with a heart defect. We felt utterly and completely alone, like we were the only ones in the entire world with this diagnosis. But then we started meeting other heart parents online, and in person that I talk to all the time.
Like I said, I loath CHD, but I believe in my heart there are a few good things to take away from it. One of my all time favorite scriptures that I refer back to often is Jeremiah 29:11. Whenever I find myself questioning God, or not obeying him and fulling giving each situation to him, I go back to this and remind myself.
“For I know the plans I have for you,” declares the Lord.
“Plans to prosper you and not to harm you,
plans to give you hope and a future.”
To say that I live by this scripture is an understatement. To me, this scripture is a reminder that no matter what happens on our CHD journey, whether Colston gets called Home before I am ready or not, there is a plan that God has had long before I realized.