Plot twist…

When something goes wrong in your life, just yell “plot twist!” and move on.

WARNING: THIS POST IS DARK AND FULL OF SPOILERS. IF YOU ARE NOT COMFORTABLE WITH DEATH AND DYING, KEEP SCROLLING

I saw this quote the other day and it just so resonated with me. Up until now, this blog has been about our gorgeous son Thomas and everything being his mom meant to me. There has however been a plot twist even George R.R Martin in GoT could not have come up with. Yup, we had our very own version of Oberyn’s head being squashed like a vrot guava. Well that’s what it feels like to us, anyway.

I had met the man of my dreams (or actually my father’s dreams, hahaha), we made a beautiful baby and life was just beautiful. Well as beautiful as being knee-deep in nappies, snot, vomit and teething can be! While waiting for Thomas to be born in those last excruciating 41st and 42nd weeks of my pregnancy (yup, I went up until 42 weeks and 3 days!) we binge-watched a whole lot of shows.

Grey’s Anatomy was one of our favourites. Man alive, that Shonda Rhimes knows how to kill nice people and she’s so the queen of no-happy-endings. Should have had a premonition of things to come when our favourite show was a show where NOBODY gets a happy ending.

We were just starting to really enjoy the start of Thomas’ independence. Out of nappies, off the breast, no more teething and best of all, we could talk and reason with the little guy. We had just moved to a house near the beach in Muizenberg, where Thomas could have more space than the little Woodstock semi he was born in. We were gearing up for bike rides, long walks on the various trails in the Southern Peninsula and lots of swimming and surfing.

Enter pulmonary hypertension (PH) and the end of all that. The average PH patient has about 5 years of good years after diagnosis. Provided diagnosis was early enough. Jenna Lowe was an example of how little is known about PH and how often it is misdiagnosed and the treatment plan worsens the symptoms. Jenna was told she has asthma and to increase her exercise. The worst thing ever for a PH patient.

Elton was diagnosed the same year as when Jenna finally got her proper and devastating diagnosis. We had no idea of what we were facing but thanks to Google and Jenna and her family’s tireless efforts to raise awareness, we slowly realized that we were in a Grey’s Anatomy episode. One of those episodes people talk about for days and openly admit that they were ugly crying.

We are now on year 3.5 of the 5 good years after diagnosis and a lot has happened. We have new furniture (assistive devices) in the house and Elton has been medically retired. We have both had some ugly cries. Like the ones Grey’s junkies freely admit to on social media. We’ve had lots of trial and error sessions with meds, new meds, experimental meds, unregistered meds, whatever it takes to buy us more time.

Because there is no cure for PH, all we are doing is buying time. We have an amazing doctor in Dr Anthony (Tony) L. Biebuyck at Panorama MediClinic. He was the person who tested Elton for everything and wouldn’t settle for “just asthma”. Something about Elton’s symptoms bothered him and kept investigating until he found the cause. There are days I wish he is not such an overachiever 🙂 But that would mean my husband would be dead. Which I don’t want either.

Thomas can read now and knows that  I document his life online so I have to ask for permission  before I “tell my friends on the internet”. 🙂

So in the light of the plot twist and the reading child, I have decided to rename my blog. Welcome to No Happy Ever After?

I know. Dark right? But I warned you at the start of this blog. Something I will do with all the dark posts as we have been told to lighten up and go easy on the death and dying already.

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