Wednesday, 29 May 2013

I woke this morning to a big smile on my little mans face. He really knows how to start the day. He so reminds me of my dad whom no matter what was going on he would wake up cheery and smiling. It use to drive me nuts as a teenager but looking back now and even today I find him so inspirational. He never has a negative thing to say and even if his life is crap you would not know it as he would never say its so. Jayden is so much like him.

I feel all choked up today which always seems to begin after school drop off. A simple chat to a mum about choice of high schools for Luke and I found myself in tears, for the thought of not having that same discussion about Jayden is truly unbearable. The mum I was with, whom I barely know and whom I had only just found out her name embraced me in a hug as I cried. You never really know how much people care and I so often feel alone. essentially i am with my feelings and thoughts but i know there are people thinking of me and that's truly special. It meant an awful lot to me for her to do that and i so desperately needed that shoulder. i left her not long after as she chased after her little boy whom i think would be nearly two and it left me with thoughts of Jayden before diagnosis when i was chasing after him. the only stress i had then was him wondering everywhere and making it impossible to stay stationary for more than a second. The concern of what to cook for dinner that night and will the kids eat it was probably my biggest problem for the day. I still think about that of course but so much more is also on my mind now.

I do try and not focus entirely on the future, because if i did I would truly go crazy. But I think about it, I fear it and it saddens me greatly. Every time a piece of clothing is outgrown by Luke I hold it in my hands and hope with all my might that Jayden will grow to fit into it. Luke's Old shoes sit in Jayden's wardrobe and every time i open it i see them and wish for Jayden to walk in them one day. Each milestone luke reaches I hope Jayden does one day too. When I look at him I hope to see his face age that I see his smile on a man someday. So many moments, objects, occasions remind me, make me think and sadden me.

I sit here now at the kitchen table in our home and everyone is asleep. Alone with my thoughts yet again. In someways relieved another day is over as I know sleep will come soon and I will have a chance to feel nothing. To truly relax and let my mind rest. And on the other hand wishing the day was longer so that I may have more time with Jayden. Some days I worry I didn't maximise my time with him enough and that I didn't give him enough attention and worry i will regret that day. I want to have a normal life but to live it is impossible when its consumed with "living the moment". That its so damn vital to live the moment that normality just no longer exists and when it does it carries with it a barrage of guilt. Hanging the washing up when I should have played Lego, cooking dinner when a ball wants to be kicked. Danny picks up where I can't but I feel bad because I wasn't there all the time. That I should have been.

So I sit here now wishing for just one day things were normal. A few hours even. Where for that period of time everything was the way it was. Just to have that time out, just to have a chance to recoup, to breathe. Of course I wish for a lifetime, for our lives to be back the way they were but right now even a small break would be welcomed.

Jayden complained of a sore face today and i noticed him moving his mouth these last couple of days as If something is bothering him with his cheek. Upon examining it I noticed its red and looks like some sort of a rash. To any other mother it's just a "rash" to me, well, my mind just goes berserk. It never stops. There is no break, no finish line to say hooray it's all over. That's the biggest misconception that people have who haven't been through this. There's no end.

what i do know is that i am so grateful to have today. I often hate that I have to be and I wish I could be ignorant and just take the damn day for granted but I can't. I will always wish, hope and pray for millions more but I know I have to be grateful for every damn day I get.

I know Jayden is. From the moment he gets up in the morning with his beaming smile to the moment he goes to sleep snuggled into me at night, he is grateful. I watched him today with his bubbles he was playing with and felt so blessed to have him in my life, he has shown me so much in life and as a councillor once said to me "he's my greatest teacher". Shes right, Every time I feel like I can't keep going on he smiles at me or does something silly that makes me laugh and I just think "what an amazing little man, my little miracle". He truly is a treasure, a beautiful, loving little man and I just love him so much it hurts.













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