One of the hardest things about this whole nightmare is from the moment it started our lives will never be the same while everyone around us continues as per normal. I spend my days and nights worrying my sons cancer may come back while everyone else gets about their lives as per normal. i even had a friend say once "well i will continue with my life and when you need me I'm here". It was meant to be a kind thing to say I know but it hurts.
I ran into and old friend from school at the shops the other day and he went into full swing about his divorce, juggling kids and how depressing that all was. He never once asked about Jayden. He was clearly consumed with his life and worries.
I walked away from him after listening to him and wishing him well and inside felt sad for him. Not because of his situation but how sad it is that he doesn't realise how lucky he is. Lucky that he has two healthy children, lucky that even though they don't live with him every day he doesn't have to worry that he may lose one of them forever one day.
I also realised that to him his life is sad, that his concerns and worries are very real to him but as I stepped into my car I wished they were mine. I love my husband dearly and wouldn't ever want to separate from him but I would swap places with this man in an instant if it meant i would have my healthy boy back.
I would do anything to take away the endless pain of the thought of losing him one day. Anything to stop this awful nightmare.
It's 2:40 in the morning and I can't sleep. Jayden hasn't been having a good sleep either and has been waking intermittently. I've always had problems getting back to sleep when I've been woken as it switches on my mind to Jayden and its almost impossible to turn off.
He has Luke's virus which we expected to happen. I hate seeing him unwell. I always feel like its so much more unfair for him because surely he's had his fair share of illness already.
So now I'm sitting on the toilet so I don't wake anyone and writing in this blog. From the moment I find myself awake my mind is thinking, worrying, playing past events in my head, scared of the future and its hard to slow it down in order to sleep again.
I can hear my kids sleeping. my neck hurts, no idea why. I guess I'm just tired and should be sleeping.
There's so much going on in my mind yet I know I've written it so many times before. Nothing changes. There is no end to this nightmare, not for anyone who lives it. Just a day to day learning somehow to live with it. Enjoying every moment I have with my kids and hoping with all my might those moments won't ever be taken away from me. Existing. Loving my children, hearing them, being with them and hoping I have a lifetime with them.
Everyday spent keeping it together so they don't see the hurt that lives inside me. The fear. The worry.
Everyday spent hoping and praying my son gets his miracle and he have the long life he deserves.
Everyday feels so long.
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