In Memory

This website is dedicated to my father Robert who lost his life at 55 to what we believe was Brugada. As you you know the gene comes form a parent. My mother is negative for the gene so that means I got the gene from my father. He died young of cardiac arrest so we can pretty much figure this one out, cant we?

So here is the crappy part. I just started a blog and I have to get down and dirty right away with the worst part.And whys that? Because you cant talk about a fatal heart condition without a fatality. Its like having a blog about cooking and we talk about taxes (another crappy subject).If Im going to talk about BrS I have to start from the beginning. But before I can discuss me, I have to discuss my father, the VERY beginning. In May he will be dead 4 years .I dont believe Ive ever wrote about that day. God knows Ive played out that day in my head every day but its never made it to paper (or computer screen) I should stop trying to be funny because its only a sad attempt to keep myself in check because I hate this subject. The hardest part for me so far since being diagnosed a month ago is that it FORCES me to think about my fathers death. That is something that my mind has shoved to the very back. When it pops up, I shove it back. It always pops up. Hes my father. I was only 30 when he died. He was only 55.We lost a lifetime together. So it will ALWAYS come up but I shove and shove and shove it back. Thanks to BrS, I cant do that. I think of my heart and I think of his. I think of how lucky I am they found it in time and I think of how unlucky he was. I laid in a hospital with a new guardian angel implanted in my chest and he got shit. Sorry I cursed. I warned you in the “about me” section. Oh well.I dont want to make a novel out of this. I really dont. But it was very traumatic and dramatic. Isnt death always that way? Unless your already forced to face a death such as a relative dying of cancer or something like that. Which I did with my grandparents. There is a stark contrast between KNOWING someone is dying and having time to come to terms with it and finding out, out of the blue with no warning that someone has died. The latter is very traumatic.

It was initially a sunny day in May when I went out shopping with my newborn baby, only 4 weeks old. By time I got home, it was grey and rainy. My kids brought me home flowers for Mothers Day and they were disappointed I couldnt plant them immediately because the rain. So instead I made dinner and we sat down to eat. A couple bites into our meal, the phone rings. I told my husband to ignore it because its a pet peeve of mine when people call at dinner time. He answered anyway and brought the cordless phone to the table with him. He answered, we ate. I heard yelling coming from the phone. My husband jumped up from the table and yelled “WHAT?!” into the phone. He stood up so quickly he knocked his chair over and dashed from the table into another room. I just continued eating. I wonder why I didnt react to his behavior but I think I was so sleep deprived from having a newborn and 3 other children, I was on another planet. My oldest daughter looked at me and said “whoever is yelling, I think they said someone died” Now I was back to earth and at full attention. I left the kids to eat to find my husband with the phone. He was standing in the foyer by the front door , not talking, just listening, and the person (who turns out to be my sister) kept yelling in the phone.He just stared at me while listening to her. I said to him, “Did someone die?” He looked at me with a look Ill never forget. It was sad, pitiful, shocked, empathetic. He just stood there with the phone to his ear while my sister ranted on staring at me while I waited for an answer.He finally nodded confirming there has been a death.”Who?” I can tell he really didnt want to say the next sentence and it would hurt him terribly to say it but at this point he had to tell me. Louder this time… “WHO!!!!????” He quietly said in barely a whisper…. “Your father”. “What?!!! What?!!! What?!!!” Thats all I could say as the tears flew out and it felt like someone punched me in the stomach and chest.I almost fell in shock.He hugged me and I pushed him away and snatched the phone out of my husbands hand. I got on the phone demanding details. My sister was hysterical. I could barely understand her. I caught bits and pieces…”Dads dead” “found in the back yard” “he was all alone” “what are we going to do?!”…Like a deer in headlights I just froze and listened, I said nothing. I was rendered speechless. I couldnt process what she was saying, I couldnt answer. My voice wouldnt work. She kept crying and asking me questions and I said nothing. I was disconnected. I hung up and called my mother (they are divorced so she didnt know) and screamed in the phone “Dads dead!” My sister called her at the same time so she had one phone up to each ear, with each daughter screaming in her ear. She barely understood either one of us. Luckily, my mother lives a few blocks away and came over right away.From here its a blur. A lot of crying, hysteria, shock, disbelief, nausea, headache. I just sat on the couch and cried and cried.I havent seen my father in years and we were fighting and JUST started finally talking again long distance. Now he was gone. No making up, no goodbyes, no “Im sorry”. It was over.I didnt believe it.Guilt and regret crashed down on me to the point of suffocating in it. My mother made a few phone calls and found out the details and relayed them to me. He was mowing the lawn after he already worked a full day. My step mother was inside watching TV. She looked outside and saw him sitting in a patio chair under a big beautiful tree “sleeping” She thought he looked so cute “napping” under the tree in the lovely back yard after a hard days work.She yelled his name out the window to wake him up and come inside but there was no answer. She tried and tried but figured he was exhausted and she better go outside and shake him awake. She said as she got closer she had a feeling of dread because his color wasnt right. He looked peaceful like he was sleeping but his color was off. She shook him and realized he was dead and barely warm. 911 was called. They flipped him out of the chair and onto the ground and tried to resuscitate him although we dont know how long he was dead. Its protocol I guess.His little chair flew across the yard and stayed upside down, untouched by anyone for days. They rushed him to the hospital and pronounced him dead at 5:21 PM. The doctor said it was cardiac arrest, his exact words “sudden death”. An autopsy was never performed so we arent positive how he died. If he was in pain or aware of impending death I dont think he would have sat in a chair. I think he would have attempted to get inside or call out for help and the doctor thought the same.He would have been found on the ground or near the house, not what looked like a peaceful rest on a May day in his new favorite spot, his back yard…..(to be continued)


6 Comments (+add yours?)

  1. amanda
    Sep 09, 2018 @ 14:54:11

    Hello my name is Amanda , I have twin boys ages 8 Nathaniel and
    Samuel . My Nathaniel was diagnosed with Brugada syndrome type 1 with fainting spells. I cam e across your story and your blogs have helped me allot, I would love it if u could maybe call or message me. I have so many questions and I’m still learning about his heart disorder. I have 5 children and were doing our genetic testing on September,18,2018 . Please if u or anyone else could call me id really appreciate it. THANK YOU , Amanda 724-754-6699


  2. amy
    Sep 26, 2015 @ 22:53:58

    I sister died of this condition age 17 doctors didn’t no what brugarda was they missed it and didn’t see it


  3. Sheii Lao
    Dec 20, 2013 @ 09:51:53

    Hi! I’m Sheila from Philippines. I’m a student conducting research about Brugada Syndrome. I’m finding persons who were diagnosed of having this syndrome and give testimonies. Could you help me? 🙂


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