Dear Lily,

I have such a wonderful following from all over the world. People read my blog, they follow me on Facebook and message me all the time and some follow on Twitter. Last night, I found out one of my followers is a 14 year old girl living in the UK. She has Brugada and no ICD. Her mother told me they sit down and read my blog together.Lily’s brother also has Brugada and they both lost their father to it. I cant imagine the loss this family has endured and I cant imagine the weight that is on this child’s shoulders. I am so touched that Im reaching out to children who find comfort and knowledge in what I write. So I decided to write a post just for Lily.


I understand what you are going through. I really do. I lost my Daddy too. Im sure you think about him every day, with either sadness or anger that hes not here. Its completely normal to feel this way. I prefer to think about my father everyday. It wouldnt be normal to forget. We are connected with people who have passed on, and our thoughts and heart help us stay connected to the person we cant see. But he can see you and watch over you.I really believe that. It gives me comfort to know that even though we cant see our father’s, we know they are still with us. We carry them in our hearts and minds forever. No illness or heart defect can take that away. There is a story and I cant remember it well but its a about a ship. A bunch of people are standing on the beach watching the ship slowly sail away. They sadly exclaim “There it goes!” They are sad it is leaving and it moves farther and farther away from the coast until its just a tiny dot on the horizon and then its gone. Is that ship still there? We cant see it but isnt it safe to say its still sailing on the ocean? Yes! The other part of the story says although there are people on one beach sad to see its gone and disappeared there is ANOTHER beach with people WAITING as they see the ship moving closer and getting larger and with big smiles and excitement they are yelling “Here it comes!” So what does that mean? We are on the beach watching the ship depart. But there is another beach we cant see where people are reuniting and happy. That will be us someday…

As far as having Brugada, remember this. You are Lily, not Brugada. Follow your doctors orders but live your life. Things can always be worse. Always! Some people cant walk, cant breathe, have cancer and are dying day by day. Dont take for granted the things you can do everyday. I know there are things you CANT do. But dont concentrate on what you CANT do. Think about what you CAN! Take a walk, read a book under a tree, go out to eat with your family, listen to music, watch a movie, go to a zoo and enjoy the animals, plant a garden, go swimming. Enjoy the sun, the birds, the sky and the clouds.Dream about your future and things you want to do. I know thats hard to do but you have to force yourself to do it.Life is not a noun, its a verb. Its something you have to DO! You have to live. Are you living with rules? Yes! Many many people with all sorts of illnesses and disorders live with rules. And thats fine.It doesnt make life horrible. Life is a journey, a path filled with lovely grass and flowers but also big rocks and logs that we trip on. We end up in the dirt, we fall, we cry, we lay there. But you cant stay there.You have to get up, wipe the dirt off, dry your eyes and keep walking the clear path. Another rock or log will show up and knock you down. But no big deal, you keep going! Matter of fact the more times you fall, the easier it is to get up and keep walking. It becomes second nature.There is no other option but to be strong…head up, shoulders back and walk.As your on this path in your life, dont worry about the hurdles up ahead, when you reach them you will be less fearful and as strong as ever because youve fallen before. In the mean time enjoy the beauty of that path,the beauty of life.Take a deep breath and say “Im alive, Im here and Im going to live my life.It can always be worse” 🙂

1 Comment (+add yours?)

  1. Jane Burns
    Apr 13, 2013 @ 20:33:56

    Wow, that was so inspirational Alicia. Brugada Syndrome has given you powerful wings!!


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