You can’t always get what you want…..


Sorry for the long time, no post. I was having major technical difficulties which seem to be resolved after a quick trip to the computer shop.


As usual things have been moving along at a cracking pace in a ‘the more things change the more they stay the same’ kind of way. The big news for this week is that Son Number One has finally received his admission booking for the MRI and other tests he has to have. This really could not have come at a better time.


Last week I was waiting a a bus stop on the edge of a highway with Son’s Number One and Two and Daughter Number Two (thankfully in her pram). Son Number One stuttered that he wasn’t feeling very well before freezing where he was sitting on the bus stop bench. His eyes were open but he was totally unresponsive and turning a greyish bluish colour. This ‘freezing’ is something that I’ve seen before in his seizures but on this occasion it lasted for 20 WHOLE MINUTES. I was starting to wonder if he would ever come back when he collapsed to the ground and started babbling incoherently as he tried to get his bearings. I had sent Son Number Two home with Daughter Number Two and the house keys so I was free to deal with Son Number One. Picture this; 70 odd kilos of 187.5cms tall Son Number One terrified out of his mind because he can’t remember where he is, who he is, who I am, freaking out as peak hour traffic with lots of big trucks roars past two metres away from us. Just for comparison, although I have a few kgs on him I am 165cms tall. I managed to get him to his feet in an unsteady fashion and tried to guide him towards home. To say this was a challenge is an understatement. Because he doesn’t know who I am he will not let me touch him. I was totally focused on getting him away from the main road. Getting him home would be good but getting him away from the highway was my priority. We made slow but steady progress. Halfway between the bus stop and the corner to turn off the highway a small dog being walked on a lead barked. Son Number One only heard a short sharp loud noise. He did not have the capacity to process the noise and it sent him into further terror as he took off running. Thankfully he ran down the sidewalk in the direction we were already heading, but it struck me that if he ran into the traffic there would be not much I could do about it. Trying to grab him only increases his fear . Anyway, we finally made it home. He took about 45 minutes to ‘come back’ to normal. I’m still recovering.


As you can see that these investigative procedures have to happen. So the appointment date should be a good thing. And it is. But it does raise some other dilemmas. I have to stay on the ward with Son Number One for all of the time he is there, day and night. Son Number Two will be perfectly fine flitting between his grandparents and his friends houses while I am away.


Daughter Number Two is a different matter. She has never ever been away from me overnight or for more than a few hours at a time. She still has a breastfeed when she wakes up in the morning and before she goes to bed at night. I am broken hearted at the thought of spending four days away from her, when she will not understand the reason for my absence at all. I spent hours last night just crying at the thought of it. I am sick of making hard choices. I am sick of never having any easy options. I truly do understand that the buck stops with me, that these are my children and my responsibility but it is hard being a single parent. And sometimes it is REALLY HARD. At the moment it is really hard, and I feel very alone.







I woke up feeling anxious this morning. The current person of interest and I had a minor misunderstanding last night. That is really all it was, nothing of any substance. But I had been floating around in a bliss bubble for a few days and I guess it hurts to fall back to earth. I am frustrated with myself about this. Frustrated because I feel like Maxwell Smart in the show’s (Get Smart) credits when he is walking away and all the different doors are clanging shut behind him. Frustrated because my reactions and feelings are so out of proportion with actual events. Frustrated because I don’t want to live a life ruled by fear but it is so much damn hard work not to just curl up and hide. Frustrated that my relationships and day to day life will always be seen through a prism of past betrayal.


On the plus side Daughter Number Two slept in until 8am. OH! MY! GOD! This is a miracle and as I couldn’t force myself to sleep until nearly 2am it was much appreciated. Just fyi, for comparison, Daughter Number Two was awake the night before from 11.30pm until 3am. Obviously she was catching up on some sleep but her timing was fab. Because it is Saturday I didn’t have to be up earlier to get the boys to school. It was very good! Decent sleep equals weird dreams and nightmares for me but I am kind of resigned to that being the price I pay. I can’t say I feel completely rested but I feel human and that’s a step in the right direction!!!


Also on the plus side; I had a call yesterday from a case management service. They are coming to see me next Thursday to discuss how they can help with support for Son Number One (Epilepsy, Asperger’s Syndrome, ADHD). I am quite exited by this. Like the respite I am hoping that this will mean big quality of life improvements for us all. Now if we could just get the appointment we are waiting on for Son Number One to have an MRI then things would really be falling into place. I do feel like I am managing things better on a day to day basis. I do feel like I am making progress, however slow.


So, I’m going to keep counting my blessings, and taking one step at a time. I’ve still got a few things to unpack and organise from my Nana’s and three kids to look after, so that should keep me busy! Cuddles from Daughter Number Two help alot too!