Monthly Archives: June 2015

I promise not to sell drugs, Mama

You two suck at peddling meth

We’ve just discovered the labyrinth of blood, destruction and hell that is Breaking Bad. If you don’t know it, hell where have you been?! ūüôā

It’s only one of the best shows. Ever. We’re late to the party but it’s perfect for binge-watching. And it’s right up our alley. Guy has wife and child (and one on the way). Guy gets diagnosed with terminal disease. Guy’s medical aid does not pay for everything. Guy has to make a plan. Guy is a chemistry teacher (actually a whizz who¬†was blindsided by a love interest who schnaaied him, took off with his ideas, and built a Fortune 500 company with her new love).

Guy finds degenerate ex-student and cooks meth to pay his bills. The purest meth ever. Junkies love it. Drug runners love it more. Drug lords love it even more.

Thomas¬† has been seeing bits of it when he comes to check in on us for a snuggle or when he’s hungry. Or he hears us discussing certain scenes. Otherwise he mostly entertains himself like only an only kid knows how to do.

Last night there was a scene of three degenerates being, well … degenerates and I thanked Thomas for being such an exemplary kid. And I mentioned how astounded I was that degenerate me¬†made such a good kid. This is how the rest of that conversation went.

Me: Aww Thomas, you’re such a great kid. I am so lucky to have a cool kid like you. I was so naughty when I was younger.
Thomas: I will try to never do anything wrong, ok?
Me: No, no, it’s a rite of passage. You have to be naughty as a kid. You have to live. Just don’t break any hectic laws that will hurt people or land you in jail. Don’t be a bad person.
Thomas: Ok, I will try to live and do stuff. But I won’t ever sell drugs, ok Mama?

Whahahahaha. What an awesome kid.

 

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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 ūüôā 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”. ūüôā

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.