It has taken me about one week to write this post, because I wasn’t ready to face the flood of emotions, let alone discuss something so vulnerable publicly. However, the reason I started this site and blog was to help others who are going through similar circumstances, but too afraid to live their life. My hope is that if I show my struggles, and how I overcome the fear, others will have the courage to do the same. Congenital Heart Disease is a relentless beast, always striking when least expected. I have been healthy now for the last 3 years, but still not without my share of punches from this disease. I fight every day for my health, live for every moment, and maintain optimism because I truly believe in beating this disease.
One week ago, on Saturday, I was faced with a hard hit from my disease. It was a normal evening with my boyfriend and son, eating dinner at Red Robin, and we decided to play at the park afterwards. The sun was starting to set, the temperatures cooled, and it was going to be a fun way to end the week together as a trio. We played on the swings, laughed together and everything was completely normal. I ran with my son over to another play structure, and out of nowhere, my disease reared its ugly head. Noises around me began to fade and it was like everything was a dim echo. My body felt so light weight, almost lifted, as the world was seeming to fade. I sat down, continuing to feel light-headed, and that is when it became more difficult to breath. Each breath I took felt heavy, and all I wanted to do was lie down, close my eyes, and go to sleep. My boyfriend kept saying, “Molly, are you alright? Are you alright?” Sometimes I would respond, other times not. Everything sounded weird, felt weird and I just wanted it to stop. My heart was barely beating, and I remember forcing myself to respond back, “I’m still here.” Those few minutes fighting to stay awake and not succumbing to syncope were terrifying. I wanted to escape, but was afraid that if I allowed the force of needing to fall asleep win, that I wouldn’t wake up. Before I was fully capable of walking on my own, my boyfriend and son helped lift and support me in the few steps it took to reach my car. I remember I kept responding, “I’m okay, but I still feel the same. I still don’t feel right”. We got into the car, turned on the a/c and immediately drove home. Once I sat in my car, I couldn’t help but think of what everyone in the park must have thought, seeing me almost collapse, then receive help to my vehicle. It’s embarrassing, yet this is my normal when my heart decides to misfire. The fear of being judged and looked at differently also never goes away.
Some of you might wonder why we didn’t call 9-1-1;. My heart never stopped beating, therefore, immediate medical attention was not required. This life-halting incident is something that will happen again, and is a byproduct of my heart defects. This has happened only once before, about 2 ½ years ago, and I am not used to it. The truth is, my medical team is unsure why it happens. It’s one of those “watch, see, and report” kind of scenarios. As I sat next to my son on the couch, my fears immediately turned into the need to comfort my son. He is so brave, helped me without fear, remained calm, and was so attentive afterwards. He is only 8 years old. I may have needed help in the moment when I almost collapsed, but it was now time for me to be a Mom. I pulled him over to me, asked him to talk about his feelings and allowed him to just open up. He cried, told me he was scared and we just talked until he felt better. He knows I’m a fighter and will not leave him before I’m physically ready to leave this world. I fully intend on living a long life. He is aware I will face these hardships from time to time, and rather than reliving scary moments, we should embrace all the good. We ended the night with laughing, Mario Kart on Nintendo Wii and snuggling until he fell asleep.
The next person to speak with was my boyfriend. He knew I was being brave for my son, and showing him strength in the face of something that was trying to kill me. Rather than being “strong” in front of him, I chose to cry and asked if he would stay a while with me. I was scared that it was going to happen again, and my boyfriend is the only person who I can truly confide in. I was scared that if it happened again, I would give in to the feeling of closing my eyes and laying my head down. I listened to his words of encouragement, and how much faith he has in my ability to fight and overcome. I remember when him and I first started dating; I tried convincing him that being with a heart disease patient could be the worst mistake of his life. I tried pushing him away because I have always loved him and wanted him to have an easy life. It’s difficult for a partner of an affected individual to watch helplessly as the patient experiences traumatic medical events. I want him to have an adventurous life. I remember telling him all the bad, going into worst-case scenario stories, and he just looked at me like I was talking to a wall. He wanted nothing to do with my negative words, and saw me for who I am; a fighter who will never give up, and who will always beat this disease. At first, I was worried that I wouldn’t be able to keep up with him. Before I knew it, he was the one telling me to take it easy and slow down! I have never given up on myself, and because of that, he knows I will always come out on the other side stronger and demanding excellent health. Thank God for people in this world who are more stubborn than myself.
Although this week has been rough, filled with emotion and tears, the next day I did what I love most; I climbed some rocks! That day, my breathing was more rapid and shallow. That is status quo for me after an event like that. My heart just gets so worked and everything is a bit more difficult. I started with easy routes, simple maneuvers as to not make anything potentially worse. Before I knew it, I was climbing my hardest route again, and even top-roping a big wall. When it comes down to it, there is just too much to live for. Congenital Heart Disease is relentless, but so am I. I have not come this far to get scared, back down and fail. I was once again reassured of my health when I received the results of my echocardiogram this week; pulmonic valve unchanged, heart function normal. It was a good reminder to me that I can be healthy, yet still have my CHD punch me in the face and attempt to knock me down. It has been a great week, and although experiencing what I did on Saturday put a scare in me that I have not felt in a long time, it also showed me something important. My heart is still beating for a reason, and I have two amazing guys in my life who give me confidence to fight the good fight.
“The purpose of life is to see what you do when challenges come your way. And the value of the experience is in how you handle those challenges.” – Jeff Lowe
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My brave daughter. I love you.