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navigating life with a terminal illness

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Disguised blessings

Posted on May 28, 2023 by Monika

I’ve never been maternal. I’ve never been the teenage girl dreaming of her white picket fence and 2.5 children. I remember a boyfriend asking me “well, do you see yourself marrying me? Do you see us having kids?” . I replied that I didn’t know, but I didn’t know if I saw that with anyone.

Even in my twenties I knew that I could inherit what my dad had. But back then, in the absence of any symptoms, and your life just ticking along like everybody else’s with parties, boyfriends, jobs.. it was a relatively faraway dark cloud on my horizon.

Slowly friends got loved up and knocked up, but this didn’t change my sentiments at all. I went through every excuse I could invent to avoid baby showers and still every time I’m shown a photo of a baby, I don’t feel much at all. So, no, thank-you I don’t want to hold your baby but OHMYGOD is that your cat!?!?!

And I love this, and am thankful for this, so much. I can’t begin to think how much harder my life would be if I had kids who I had to support and comfort while progressively getting sicker, let alone worrying if I had passed the gene on to them.

My mother desperately wanted a third child she has sometimes told me. But when my uncles got sick, then my dad started showing symptoms too, they knew the right choice was to stop at two.

Now, at 39, the choice has physically been made for me. I will never bring life into this world. I’ve never wanted to and given then state of this place I never will.

For my immediate family, the illness stops with me 🙂

About Me

Welcome to my page! Im a 40-something Dutch-Indonesian Kiwi girl living in Brisbane, Australia. This is my story living with a degenerative, life limiting illness.

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