Guys? I turned 40 last month and on the 1st of February this year I made a decision to consciously uncouple from Pulmonary Arterial Hypertension (PAH). I was heading for 40 and just finished the latest round of going through all of the tests the medical aid and medicines council need to help us beg for them to pay.
The news of wrong arterial pressure readings knocked us further sideways and I needed to uncouple for the sake of my sanity. Also, I had a desperate need to celebrate. And celebrate I did. #Oneis40 was my hashtag and I owned it. After 4 months of glorious uncoupling with wanton excess and indulgence, I now need to go back to tricky terrain.
Another round of tests await. Another round of having to go to the various medical bodies with begging bowl in hand. The double dosage of meds we were trying based on his new arterial readings has done nada in the last six months, so we have to go back to the drawing board. The drawing board that has loads of fab meds — in the US/Europe — but just two in SA. The weakest two. The runt of the litter, so to speak.
First on the agenda will have to be a heart catheterisation to definitively establish the pulmonary arterial pressure. Based on that, doctor will have to decide which meds to try next. Milpark hospital up north has been doing some great work with PAH patients and have helped patients get their hands on the super IV drugs we don’t get here easily. We might have to move the husband to Jozi but first things first… get into that heart and see what the real deal is.
So, yes it looked as if things were going fabulously well in our little world, but that was just because I was in deep denial and taking a break from carer wife-ing. That little break from PAH did me a world of good. Perspective and all that. I feel renewed. Energised. Bracing for what comes next.
You know those moments as a parent where you turned away for one second and something bad happened or almost happened? Yup, I know we all have one or two.
I had one of those moments that haunts me to this day. Four years later and it still haunts me. Nothing bad happened. But it was SO close.
Our almost horrible incident: We were at Rhodes Memorial, he was 4. Thomas was running on the upper part of the monument on the right, closest to the parking lot. I was taking pictures of him running. Laughing at him playing peekaboo with me by hiding behind the pillars. I didn’t see the big drop at the end of the platform. A drop of about 15 metres with trees, gnarly roots and bits of granite foundation at the bottom. He was running for the edge and I didn’t register that there was no wall to stop him as I was standing on the steps. He somehow managed to stop himself before vaulting off the edge but I was paralysed with fear once I realised what could have happened.
When that horrible event happened in the Tokai Forest in March, it brought a lot of things to the surface. We used to go to the Forest regularly before it became too long a walk for Elton. Thomas used to get impatient with us and we would let him ride his bike ahead of us and I would try to keep up with him and shout for him to stop if I felt he was too far away from me. In my head the threat was always a horse kicking him, an unleashed dog attacking him or him drowning in the stream. Someone grabbing him in the forest wasn’t really high on my list. Then that horrible event happened and people asked why was Franziska Blochliger alone? When I heard the full story about her running ahead of her mom, an icy hand gripped my heart. That could have been my child. Thomas went ahead of us so many times. I know what I go through every time I relive my almost horrible incident.
Most recently the Cincinnati Zoo thing happened and again people asked how was that boy alone for long enough to slip through the fence? Again my inner torturer reminded me of how I was watching Thomas all the time when my almost horrible incident happened and yet it almost happened.
Thing is, parenthood is effing relentless. You have to stay woke every second. There is some measure of peace when they’re asleep, but that’s when you start worrying about other things. And thanks to my almost horrible incident, I know better than to ask where was the mother? Because that mother is me. I was right there with Thomas, I was watching him. And it almost happened anyway.
I am a bloody good mom. I can handle this. I am woke. I am certainly not careless. But kids are fast and they want to explore and things happen.