HEP Hero Linh Nguyen

June 1, 2015

Linh Nguyen

Public Speaker, Community Advocate for Hepatitis B

“I am a Hep Hero because Hep B shouldn’t define you” 

I have become Hep Hero because I want to offer mine and my son little voice to raise awareness. My story is a letter I wrote to my son.

This letter is for my little man, in hope that I can explain to you why I sometime looked a little sad at you; I don’t really know how to tell you verbally so I decided to write you a letter instead. After reading this letter I hope that you can appreciate that I didn’t treat you any different from your sister, to me you’re a normal little boy with Hep B who often brings home flower for his Mama.

I don’t think Hep B should define you as a person. I found out that I have hep B when I was pregnant with your sister, I didn’t really know what Hep B was or how I got it.

When I first got diagnosed I didn’t really worry about it, I didn’t know why but the Doctor told me that I could of gotten it from my Mum – your grandma or sexual intercourse (this is the reason I couldn’t talk to you either and this letter won’t find its way to you any time soon).

I did try to find more information about it through local GP but the information was limited at the time or I didn’t know where to get it, not sure. Then I got really scared because I’ve got something that does not offer much information for me except for a few pamphlets.

Although your sister’s Dad didn’t have Hep B or my mum, so I was left feeling frustrated and feeling that I been lied to and somehow I was responsible for this.

Eventually, at 30 years old I found out I was adopted, I was devastated and angry with your grandma, so much I really didn’t speak to her for more than 2 years. I guess I needed time to heal and found out who and where my birth parent were, I supposed it was hard because there were no prove of birth date or place of birth, so in the end I made peace that in this life time I would never find out where I came or how I got hep B.

My philosophy is that you live your life well, so you don’t have to come back to do it again, so I have always do the right thing for myself – which means that I try to have a healthy life style, I drink those veggie and fruit smoothies in the morning so I can eat whatever I want this includes ice-cream for breakfast, and Mr don’t you dare do this.

I always try to be content and thankful for what I’ve got and always surround myself with those I love the most. For 2 years now, I’ve made a decision not to have any more children. I’ve explain my reason to your Dad and I thought that he really understood my heart break after I found out that you also have Hepatitis B just like me.

The day I found out that you have hep B, that night I stood at the side of the bed staring at you thinking that there was something that I should have done to prevent this, or did the nurse at the hospital gave 2 injections just liked I’ve asked? I must have stood there for very long time for your Dad to notice that I did not leave you and come out to the living room. I was so angry, mad and disappointed all at the same time, I was angry with myself and the universe, I wish that I would be the only one who have this disease and not you, not my baby!

Your Dad told me a couple days later, not to worry so much because you’re my boy so there is nothing that you couldn’t do and there is no-one that you couldn’t be, so I guessed that could forgive him for never taking me out on the first date.

You see 4 years ago I or we decided to have another baby but I was so unsure because I didn’t think that I am brave enough to bear heartbreak. After many discussions and sometime arguments, I decided to see the Hep B specialist to see whether that I could have another bub without hep B, but unfortunately this would not be the case for the new baby, even though the specialist assure me that there were drugs out there that I could have during pregnancy but again that only reduce the risk from 8 – 10% down to 2-3%, after all to me the risk was still there.

I started to think about all those time we visited the hospital for you, every 6 months with all those blood tests, the times when you cried and times when you didn’t, but you always remembered to asked for an extra lolly for me, as we ate our lollies I wiped away those tears and my heart broke every single time, so I decided not to have anymore babies, please don’t get me wrong I would love to have another version of you or your sister.

But I often think that I was blessed twice in my life time, I have fallen in love with someone that I haven’t met and twice I was head over heels in love at the first meetings. I always hope that there is a cure in your life time and in the mean time I hope you will Live, Love, Learn, Laugh, Forgive, Let go, make peace and always stay true to you.

Linh’s message to others:

“Live, Love, Learn, Laugh, Forgive, Let go, make peace and always stay true to you!”

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