Wednesday, 23 April 2014

It's 2:45 in the morning and I can't sleep. Jayden has been tossing and turning as he's not well at the moment. I went out today to do some shopping and when I got home he had fallen asleep on Danny's lap. So unusual for him and as always has got me panicked. Trying not to think about everything but it's truly impossible not to worry like crazy.

It's been a while since I've written in here regularly and I think a part of me is trying to stay away and block things out. Figuring maybe if I stop writing it might all go away. Logic of course knows otherwise but living in a state of denial sometimes makes life more manageable. I know however that I'm constantly sitting on the edge. That the slightest thing could tip me over. Today while I was out I ran into a lovely lady and we had a chat. We discussed family, holidays etc all the normal things mums talk about. I'm not sure what exactly triggered my emotions, the normality of the conversation which I always find hard or just that another emotional wave is on it's way through. But when I walked away I wanted to cry. Why isn't my life normal like this other ladies? Why can't I really just be thinking about the holidays and what to have for dinner? Why? Why? Why? . I had to go into the shopping centre next but what I really wanted to do was hide in a corner and ball my eyes out. I walked through the shops trying to focus on what I needed while desperately fighting back the thoughts and the emotions that go with the reality of our life.

I hope and pray Jayden will be that 10% and I know of so many other mums hoping and praying for the same thing. And I try to live each day in the moment. I can no longer plan for the future and having those conversations with people is really hard.

I'm so excited about being able to plan his 4th birthday but so hurt as well that I can only live day by day. I want to be able to think about his future but I can only plan from one MRI to the next. I watched him at the dinner table tonight as he entertained us with his beautiful personality as he does every night. His smile, his laugh. His beautiful big brown eyes. And I wished I could be seeing him through the eyes of a mother that wasn't fearful of his future. The mum I use to be before diagnosis. Now I look at him and feel the tears well up inside me worrying, that he may not get to grow to be the beautiful man he was born to be. It breaks my heart. I'm so scared.

As I write in here tonight the tears fall down my face and I'm glad of it. I haven't had a good cry in a while and I know I needed it. I'm not sure if fighting it all the time is best but then crying all the time isn't either. I never wanted this for my sons life and not having any control of it is so damn hard to live with. All of it. Just trying to manage sometimes is damn hard. Pulling myself together everyday to live a life that no longer is the one I chose is hard. I feel so sad for my son. I love him so much. I tell him every moment i get. Hug him, kiss him, to the point that he's telling me "no more kisses mum". I just want him to stay. To be with us for a lifetime. I so hope and pray for that.

I need to sleep.



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