I do manage to get him in bed early every night though and he reminds me if I'm running late. His little body is like a clock that is set at the same time to go to bed every night. If I go past that time he gets overtired and understandably cranky so we try to get it right as much as possible . If of course unexpected visits to the hospital arise like the other night then that just blows it all out again.
Yesterday Jayden was still up and down all day with his energy levels. One minute he will be sprightly and happy and the next he wants to be carried everywhere. I thought id start his day with something he would enjoy and i have to do anyway and took him to a wonderful toy shop. understandably he had a blast and didn't stop talking but after a while he stopped and asked to go home. its as if a switch is turned inside his body and he just has to stop what he's doing. its very unusual but no doubt makes sense when you think about all the drugs that have been put into his little body this year. It worries me though because when he does this I can see in his little face that something is up. He can't articulate it but his facial expression says it all. I wish I knew what it was and I wish I could make it better. All I can do is cuddle him. At these moments while I'm cuddling him, I'm scared. Really scared. When I don't know why he's feeling yuck it frightens me. I don't know what's going on In his little body but my instincts know something is wrong. I squeeze him tight and wish with all my might whatever it is goes away and he can feel better soon.
During our look round at the toy shop a lovely lady approached me and asked me what Jayden's condition was. I really like it when people ask. I much prefer them to say something than stare and say nothing. by saying something it feels like Jayden has been acknowledged that he exists and so does his condition. It was really lovely of her and it turns out her friend is a mother I know from 3b who also has a child with cancer. A baby should I say. Her 6 week old baby was diagnosed with cancer. Truly nothing about childhood cancer makes any sense. I spoke with this lady for sometime and I can't even put it to words how much I truly appreciated her listening to Jayden's story. It really made my day to be heard. Lovely woman.
After she said goodbye I continued to follow Jayden around until I was approached by a guy who asked if I needed any help. He too asked about Jayden and again I had a lengthy conversation about him. It turns out this guy owned the toy
shop we were in and he too had been diagnosed with a brain tumour. Fortunately for him his was benign and was removed. he was so wonderful to talk to and had so much to contribute to the conversation. He told me his sister died of leukaemia at age three and I asked him how his family managed in particular his mother after her death. It is so therapeutic to talk about Jayden to people who want to hear, who ask. i don't think these two people that morning really knew how much that meant to me or how much it helped me get through the day. i am so very grateful to them.
Shortly after we came home from the toyshop and had lunch Jayden fell asleep on my lap. We were sitting out the front on a rickety cane chair that my mum use to sit on in the exact same spot. I sat there with Jayden asleep against me and thought about her. I wondered what she would say to me right at that moment had she be sitting with me. I didn't get an answer but I felt this overwhelming sense of warmth that maybe she was there with us. I hoped she was. I hope that she was with me all through this journey and that if I do lose my son she will be wAiting for him with her arms out wide to embrace him in the biggest, warmest cuddle that she always knew how to do best.