Last night as we all lay in bed and after the lights had gone out Luke asked me," mum, is Jayden still sick? Does he still have his cancer". I replied "no darling he doesn't have his cancer anymore". "Will it come back mum?" He asked. "It could". I replied.
"I hope it doesn't mum, I don't want him to be sick again".
"None of us do sweetheart" i said.
He went to sleep shortly after and I lay awake, eyes wide open, thinking about what he said. He knew from the conversations that we have had that other children like Jayden have their cancer return. We all know this can happen. I laid there with that tight feeling in my chest and the sadness in my heart and turned to watch my little mans face in the darkness. As a mother this is no doubt the hardest thing in the world to face- the very real possibility of losing my child. i try not to think about it, truly i do. But I watch him now and see him as the beautiful boy he is, the baby he once was, the first time I held him, kissed him, laid with him. Every time I went to him in the night when he cried, so many memories and thoughts swirl around in my head as i watch him. I love him beyond words and I truly can't bare the thought of losing him. I'm so scared.
I held him in my arms tonight for the longest cuddle he'd let me have and thought about how grateful i was that we were sitting in his room and not on a hospital bed. I know as I'm cuddling him and with him at home there are others in there doing what we did and it scares me beyond words. I am so frighten of having to go back there, of having to walk through those doors again with my son.
It's no way to live, I know. I spoke to a man today who reminded me of that as that has been what he has been doing with his wife. Wasting time worrying about the future. But I know it's there and I'm frightened. I always will be because I love him and I don't want to lose him.
I thought I was doing ok today and was managing but as the day went on I could feel myself becoming more fragile, then finally a text message from a dear friend sent me crumbling.
This journey is so hard on so many levels its truly overwhelming. I find myself not knowing how to relate to people the same way I could but needing to so badly. I'm trying so hard to keep my feelings at bay so I can live on some level of normalcy but its almost impossible. By the end of a day of trying to do it 'normal' I'm in a heap. I think I'm coping and about to pat myself on the back and out flow the tears, fears, anxiety and sadness.
It's when I'm on my own and no one can see me, like now as I lay in the darkness with my little man that it comes. I wish our lives were so different. I wish this pain in my heart was not so agonisingly unbearable, that my son was the well little boy he once was. As my tears fall I lay watching him sleep and I wish with all my heart that I can watch him sleep a million times more. That I see his beautiful face on a man and his face on his children.
That's what I wish for.
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