I love the game of charades that we play almost weekly, where I called and try and speak to anyone/someone Hospital based and then try and interpret what they are on about when they are clearly dodging my questions or fobbing me off!
BUT (don’t faint) having been in limbo and this crazy roller coaster of feeling up and down, with no steady, we finally have been given a ‘pre op’ date, we didn’t even know we were having a pre op?!? The details of which we still non the wiser. Oh and thrown in for good measure a eye test (linked to a kidney scan) that we didn’t know was happening and for what purpose…. Turns out they want to check for ‘tubular sclerosis’ (if you google it you are braver than me, something about benign tumours) thought it rather kind of them to let us know that Reedy was at risk of this… Waaaaaaaaa is what reedy and I are saying fairly regularly atm!
Luckily nothing will stop this little dude:
To take our minds off the game we start swimming lessons tomorrow!…. Wish us luck!
So two weeks have passed since we received full details of surgery and await a date, since then there have been; a couple of job applications completed, a few more counselling sessions to get head round our shit storm, a few beers at the Chiefs, a few tantrums (mostly mummy), operation ‘sort the allotment’ in full swing, been to the beach, play dates with super friends and things are pretty rosey. …. Or is it?!?
Who can complain when we have a two pronged attack for bedtimes, bath times, alternative day lie ins and permanent babysitter if we want to pop out or nip to shop, eliminating the endurance exercise.
I called the surgeons secretary yesterday to poke them into giving us a date, apparently there are 20 children and young people on this list and now there are 21 with Reedy. So could be a while, arrrrggh! So we wait and we attempt to live some kind of weird reality of going through the motions.
Bloody Nora I am shattered, off to play a waiting game where no one wins!
I hadn’t seen one of my boober friends for a long time so we had a wee catch up. A fav place for us but this was the first time that I had taken Reedy there since his seizures got really bad and since we had met the surgeon to talk about the ins and outs of surgery.
The older children played nicely together and in between chasing them, yelling “stop eating that”, “you coming out of that tree?” And “where are you?!” And following Reedy round like a hawk, trying not to compare the abilities of the two 18 month olds My beautiful friend made the mistake of asking “so what’s the latest?”
* tangent! * Now I know I shouldn’t compare as let’s face it with the amout of electric storms going on in his head its a wonder he has developed at all. According to the consultants it’s amazing that he is doing so well, which is a bit embarrassing when we are blue lighted into hospital and then he climbs the chairs and tables or lets himself out of his room and runs off down the corridor!
Back on topic….. Fatal mistake “what’s the latest?” After I regurgitated my practiced, factual spheel, avoiding eye contact, I realised that she had welled up and I too just had a little cry. Our boys are a month and 6 days apart and we are very close. I didn’t realise the pain would be felt quite so much, most people just shrug and say “oh he s in the best hands” or “but he is so normal, you’d never know he was ill” or just sit quietly. Somehow, seeing a few tears in her eyes gave me permission to aswell, without feeling like a basket case or like I was a mad ed! Which believe me there are lots of people that think you are!
Anyway after a super lovely day out, a good chin wag the kids and is in one piece, in the car and driving home (one child asleep and the other just sat quietly – which almost never happens) there was a huge gust of beautiful pink Apple blossom that made me feel that just possibly things will be okay.
Well two days ago we met with the surgeon to talk about the surgery he will conduct on Reeds brain.
Sleep for me has become a distant memory, replaced with fear, uncertainty, panic and constant observation.
Who knew that the reply to “how are you?” Would involve “they will remove the temporal lobe and send it for research” and “they will just disconnect from the rest of the brain” “there is a small chance he will die or have a stroke”. That’s not the normal “oh yeah fine thanks you?!”
Luckily it’s fairly normal to turn nutty when receiving such news, so the psychiatrists were on hand and my local dr has arranged counselling….. Luckily the date for this is fairly timely to hopefully in some way buffer the shock.
There again, not sure why such a shock as this is what we have been waiting for for nearly 5 months…. Perhaps I was holding out for a magic wand, miracle cure, reality of epilepsy sucks ass big time.
Yawn better get back on watch!