“This is my command—be strong and courageous! Do not be afraid or discouraged. For the lord your God is with you wherever you go.”
– Joshua 1:9
It’s been a while since I have had much to say. This blog was created as a place so I could share my story with other congenital heart patients. Being one of the oldest living patients with my condition, I tend to be some what of a rarity. Sometimes it’s really cool. Other times it can be quite intimidating. 2016 has actual knocked me on my strong little bum more than once. The beauty is, this little lady never stays down very long.
I do have to say the last two months however, have opened my eyes to an entirely new world. Our world, this big fantastic place full of so much wonder, seems to be in so much turmoil. It’s actually very heartbreaking. When you realize how short and precious life really is, it should be about finding your joy. What makes you laugh out loud, love wildly and want to dance in the rain with you hands in the air? We are all human. We all bleed red and we all return to ash when we go. So why do we spend centuries fighting, hating and arguing? I think in part it has to do with fear. We are all afraid of something. Of dying, or not finding our love, our happiness or of being heard.
Most of my adult life I never thought I was afraid of much, except for frogs. Those little suckers will take me out fast. (I know, I know) But, I never really thought I was afraid of much. When you survive five heart surgeries and a staph infection you really think that you can handle most things in life. For the most part I do handle things fairly well. Walking on sunshine and smiling with a cheesy grin is how I roll on a daily basis. I mean, why not? It’s so much more fun than worrying about things and being negative all the time. There are a slew of reasons that I could be that way, but I choose not to be, I choose to be happy. Serious is not my cup of tea.
Today though, today I am a little serious. My thoughts are heavy. I spent a month in the hospital in May for gallbladder surgery and that should have never happened. The Mayo Clinic had me in and out in 8 days for heart surgery. So, it’s got me thinking about things today. And not just my hospital care, but my future.
Most people don’t know that I live with chronic pain. Actually, maybe one or two people know and that’s about it. On a day-to-day basis I can live with it by working out or stretching, but that doesn’t always work and I refuse to take pain meds. So, I just deal with it. I also live knowing that right now, at this moment, should my heart have any serious complications, there is no way to fix it. I am not a transplant candidate. And my heart tissue is so scarred from all my surgeries there isn’t a lot of healthy tissue left. The beautiful part of this ugly story is, I feel great aside from a little pain. I can do things that most healthy people can’t do. No one looks at me and thinks, that girl has half of a heart. Nope. Because I am not sick. By the grace of God, I am healthy.
What I also don’t talk about and what I think a lot of people with situations like mine don’t talk about is the scary stuff. The nights where I wake up at 1 am because my heart beat weird or the nights I don’t sleep because my mechanical valve is clicking so loud it sounds like a bomb is about to go off in my chest. Or am I having a heart attack or just palpitations? Should I worry and call someone or just pray? Just so you know, I never call anyone… But the worst for me is, the what if… I don’t live in the what if because I am not a serious person and God has gotten me this far so why dance with the devil? Well, even Jesus sweat blood knowing what he was facing and I am nowhere near as strong, faithful or as pure as Jesus. So for this one brief blog I’m going to share my what if…
If my heart quits on me I am really not afraid to die. What steals my joy is all the life I will miss out on. Like watching my little’s grow up and spoiling them rotten. Playing tea party’s, watching them win games, seeing them graduate and being there for all the in-between moments. They won’t know that Aunt Gena’s heart was so full by the sound of their little voices talking for the first time and their laughter or that the roll of their eyes just kills me. They won’t know that I would have been their greatest ally and that I was one of the coolest chicks around. I won’t get to be there when they need to yell about how unfair their parents are being (even if I would have agreed). My brother will walk his daughter down the aisle one day and I won’t be there to tell her that she looks as beautiful as her mother did. Will she grow up and still look like me? And my nephew is so much like his dad. It makes me laugh just seeing the two of them together – what will his child be like? My other two nieces with all their sass, how will they ever know that our little slumber parties were some of the best days of my life… I can’t even begin to imagine all of the wonder and excitement I will miss in each of their lives.
And love? What if I never know what it is like to wake up next to someone who can’t stop holding me. I don’t even remember what that is like… You know that love where you roll over and smile because you’re so in love your heart might burst when they smile at you. Where you like the same things, right down to the same kind of peanut butter and jelly in your fridge. Or you have silly string fights because who says you have to always act like a grown up? I believe in that kind of love. It’s joyful, but what if I never get that again? At least I know I have had great love, right?! What if…
“Be strong and courageous”, says the Lord. I would like to think that I am strong and courage comes through the battle. My step-brother says that I am his hero. The man has gone to war three times and I am the hero? We argue about this often. I’m no hero. I just feel like a person who keeps going. That is all I have ever really known. My God and my faith get me through. But, what if it does go wrong? Well then I am going to spend every second Living and Loving as much as I can until it that point. The flip side is, what if it goes right? I love the flip side! It’s why I don’t live in the what if. Because yes, its crap that I have to deal with this stuff every once in a while. But 95% of the time, I am living. I am rocking it out. My figurative heart wants everything to go right. The stuff that makes me, me, believes that it will. Like I said, I walk on sunshine baby, I live for the joyful moments. I choose to be strong, in my body, in my mind and in my soul. I can do all things through Him who gives me strength.
I am far from perfect, as we all are. Clearly I am afraid of more than just frogs after all. However, if we just change our mindset, even in the darkest hours, during our what if’s, hopefully we can find our strength and a little bit of courage. What if it all turns our better than we could have ever hoped for?
2 thoughts on “What If…”
“The nights where I wake up at 1 am because my heart beat weird or the nights I don’t sleep because my mechanical valve is clicking so loud it sounds like a bomb is about to go off in my chest. Or am I having a heart attack or just palpitations? Should I worry and call someone or just pray?”….this absolutely resonated with me.
I find comfort and amazement in my valves ticking but they do give me some scares.
I’m glad you’re doing well now.
Thank you so much for the comment. The valve is a catch 22 sometimes. We never want it to not click and most of the time I don’t notice it, and sometimes it cool. My nephew calls me a robot. HAHA! I’m getting close. 🙂 I think the palpitations get me the most. I pray that you are well. God bless!