Yesterday while danny was at his course I decided to take the three of them to the Perth Royal Show, on my own. I was hoping it would be quiet as I headed out when the grand final was about to start. I couldn't have been more wrong. It was packed. Really packed.
I so wanted Jayden to experience the excitement and fun of it as I don't know if he will get another.
However it was so busy so he spent most of the time in the pram and no time having fun. In fact none of us did. He couldn't go on the rides as the cues were so long and there was only one of me (not very well planned). I'm not one for crowds and neither are my kids so the whole event was really quite stressful. After an hour or so Jayden understandably lost his cool and talking him through his tantrum was difficult when all I wanted to do was make him happy. It truly broke my heart.
I really wanted him to have a memorable day but the only thing memorable about it was how stressful it was. We spent the whole time trying to avoid the crowds so he could get out of his pram for a bit of a run around but everywhere the kids wanted to go was mayhem. Honestly wish I had of stayed home.
He was so unhappy about leaving when we finally did and a huge tantrum to get in the car topped the shocking decision to go in the first place.
Today is Sunday and I'm still feeling crap for not being able to fulfil my little boys excitement about going to the show. Honestly, guilt is an awful feeling.
It's no doubt made worse after watching a video from utube of another family who's child was diagnosed with ATRT and after years of fighting it, sadly passed away. Shocking reminders that we may only have a certain amount of time with Jayden and how long, we will never know. So the need to cram everything in to his life is so great its overwhelming and the task to do it seeming almost impossible.
I try to appreciate and be happy with all the little things he does get to do, like catching a ball, walking down the stairs on his own, new words etc but inside I just want so much more. What mother wouldn't? I hate that I feel like we are living like a time bomb, wAiting to go off. It's awful. And so when I try to do something special and it fails, I feel so enormously crap and guilty and so wish that it were different. not a day goes by that i don't wish that.
I just want him to have the best life he can and experience as much as possible in it so he doesn't miss out on anything. But to achieve such a goal is so hard, so much pressure that contains an enormous amount of guilt when I don't make it perfect for him.
I hate that I live like I'm controlled by time. That every second is so precious and I can't afford to waste one of them. That when I do I then feel guilty that I may have missed a precious moment or denied him an experience.
I can only hope that my worries are unfounded and like the easy going three year old that he is, he didn't care. That he hasn't given it another thought- unlike his mother.
Jayden at the show grounds
Stopping to have something to eat.
I truly hope all my kids have full lives with loads of exciting experiences and more than anything, long lives.
I always feel the need to end each blog with my hopes in the hope that the more I say it, write it and feel it, then it will be true.
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