Emotional Tug-of-War

My 5 year old son, Liam, has a serious heart condition called Wolff-Parkinson-White Syndrome. He began seeing a Pediatric Cardiologist in January this year. After the EKG, Echo, Holter Monitoring, and Clinical exam, we learned that he didn't have what we originally thought, ASD, and were then referred to a Pediatric Cardiologist Electrophysiologist. Dr. Gamboa is the nicest specialist/surgeon I have ever met, and believe me when I say that I have met dozens. He cares and he calls us personally to check on Liam. So with Liam's WPW diagnosis we have been thrown into a whole new world with medical terms that are sometimes hard to pronounce and spell and even harder to explain. In a nutshell he has 2 problems: an extra electrical pathway in his heart and a PFO. With this extra pathway Liam has SVT episodes where his heart beats so fast you cannot accurately count the bpm. It is normal for Liam to have a heart rate of 170 bpm doing absolutely nothing. Can you iagine how that would feel? I can't. We are fortunate to have found this problem as early as we have, most kids are not diagnosed until adolescence. This is the kind of syndrome where people will die of sudden death. The doctor warned us several times about the real possibility of sudden death. Liam could go to sleep and not wake up or go into Atrial Fibrillation, which if that starts (the top 2 chambers of his heart beating at over 300 with no time to eject blood) there is nothing in this world that can save him. There is also nothing to prevent atrial fibrillation. So he needs 2 different heart surgeries. However, to have the first and most important surgery you have to be 5 years old and weigh 20 kilograms. Liam barely meets these requirements. If surgery is done to soon, permanent damage is risked to the heart, and he ends up with a pacemaker or dead. If we wait too long we risk sudden death which is always a possibility. I have never in my life, until this moment, had a life or death decision to make. My heart is so heavy. I love this little boy so much, When he has this surgery they will go into his heart, inject medication into his heart to stimulate a SVT episode, find the pathway, reverse the meds and then burn or freeze, depending on its location, this pathway. They will leave him on the table for some time because his heart will try to reopen this pathway or create a new one, that's just part of his syndrome and if that happens, which it probably will they repeat the whole process. He will stay in the hospital post-op, for how long depends on the surgery. The first 3 months post-op are the most critical. Once the surgery is deemed successful he will have a second surgery to close a hole in his heart, a PFO. And then for the rest of his life he will see a Cardiologist. He could end up repeating ablation many times, end up with a pacemaker, and/or be put on medication. When he has episodes now, we use vagral methods to slow his heart, which have worked so far. If he ever has heart rate 200 or above for 20 minutes, we call 911. I had a meeting with his elementary school about his condition and what to do if Liam says that his, "heart isn't taking any breaks". A conference room full of people who have contact with Liam, Kindergarten team, Speech Therapist, PE teacher, school nurse, principal, and office staff, listening to me while I spoke and showed them diagrams. They have handled his episodes amazingly well. He is in good hands there.

But the emotional tug-of-war, is real. I am overwhelmed, sad, stressed to the max, worried, frustrated, and many other things depending on the moment. But I am grateful beyond description for knowledgeable and caring doctors and the technology and safe medical practices that we have available here. I go back and forth between these 2 sets of emotions. Sometimes I am ok and sometimes I am not. I totally fake it. I have an extremely difficult time letting people in and confiding. I smile and pretend that everything is fine and we are so lucky and blessed, and we are, it's just that I don't feel only that way all the time. We have had many surgeries and trials of health and I worry that people have labeled us as "people with sick kids". I have been told supportive things and mean things. Once after a very difficult pregnancy loss a neighbor actually said, "Maybe if you were a better mom God would not have taken your baby away".  I was speechless. How could someone think like that, let alone say it out loud? There are many "before and "after" moments in your life and that pregnancy loss was a defining moment in my life. And unfortunately no matter how many wonderful people have come into my life, that one stupid comment has haunted me. I second guess myself all the time. I look at Facebook and see everything that I am not. I tend to keep to myself which is painfully lonely sometimes. Life is so hard, harder than I ever could have imagined. Someone recently said, "you haven't learned what you were supposed to learn, that is why you keep having these trials." Really? I think our mortal bodies are imperfect and we get sick. I don't think my Heavenly Father is punishing me for not "getting" some lesson by making my kids sick or have syndromes. I know that people mean well. But off remarks that try to rationalize and make sense of things hurt, they don't help. I will gladly take a hug any day or just a sincere "how are you today?".