Saturday, 29 September 2012

Time at home

Haven't blogged for couple of days as we have been spending some beautiful time enjoying having Jayden home.
Having a tough day today though and finding it hard. I think the lack of understanding from others really pushes me back a step and I find myself smack back in awful land. Where I can't think about anything else but this dreadful crappy situation that rips at my heart and makes it almost impossible to breath without aching in my chest.
I'm trying so hard to come to terms with my life now but somedays I just can't. I try to find away in my head to accept what is but most days I just want to cry.
It's not until I talk to someone or receive an email from a friend that I truly realise how alone I am. They will say something that is not meant to be unkind but in some small way disregard what we are going through and then I'm reminded we are truly in this on our own. Everyone is just looking in from the outside, no idea what's really happening here or how much this whole situation on a 24 hour basis is so painfully consuming and heartbreaking. I watch my son everyday go through so much crap it brings tears to my eyes just the thought of it. When I look back on the last six months and what he's been through I'm beyond words. I can't believe to this day how much he has suffered, how mentally scarred he must be and certainly i know he is physically scarred. Danny and I talked about it this morning as we both went to bed last night thinking the same thing... What we have put him through. Now that his treatment Is nearing an end we will find out if it was truly worth it. Kids diagnosed with ATRT like Jayden typically have a life expectancy measured in months not years, as a doctor said on a video I watched the other day and posted on my help Jayden stone Facebook page. So we can only hope and pray that all the pain, tears and absolute torture at times would have been worth it. I do hope so. With every inch of my being I hope so.

I cuddled him tonight in bed and as he was chatting away to me I found myself crying. Tears trickled down my face that were unseen by him as we were in a dim light. Every time I hear his little voice I want to cry. Tonight I couldn't help it. I couldn't help but think will I ever hear him put all those little words into a big sentence and then a conversation. Will I ever get to hear him tell me about his day at Kindy, pre primary, school. What will happen if I don't? What will happen if I never get to hear that. I try so hard to come to terms with that very real possibility, but I can't. How could anyone? I can't just be thankful for each day when all I want is a lifetime. I don't ever want to say goodbye to my son and I'm so very scared I will have to one day.

We went to Danny's parents today and from the moment we walked in the door I wanted to ball my eyes out. The last time we were there Jayden was well and to be there again with our circumstances so different it was truly heartbreaking. After arriving and general chit chat which I find so damn difficult I found myself in the kitchen looking at photos on the fridge. A picture of Jayden with Layla and Luke before he was diagnosed cemented how damn hard it was to be there and how damn hard out life is now. It took my breath away in a bad way and I cried. No matter what we do we will never be able to get away from how shit this is and how awful we feel. I can't run from this, hide from this or even get a break from it. I watch my little boy every day, hold him as much as he will let me, kiss him and hug him as often as possible and there's no easing of this pain.
No comfort to be had in a cuddle from a friend or family either, no words can truly ease this pain, nothing, nothing stops this heartache.
I'm glad we went to Danny's parents though, for Jayden, as his cousins were there as well and we will keep doing it for him no matter how hard it is. I want him to know his cousins well and for them to know him well, for he is so very special and I think they should know that. I want everyone to know how special he is and how important he is to us. For he is a little hero and beautiful little man that asked for nothing but to be loved. We are going to make sure he gets that, my only wish is that i had a lifetime with him to do it.

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