Its midnight and I cant sleep. i went to bed early and fell asleep OK but have woken and cant get myself back to sleep. I just keep thinking about everything and it makes it virtually impossible to get back to sleep. I thought if I got up and blogged and put it all down I could sleep. but I'm not sure sitting in front of a computer screen is the best remedy for sleep.
I don't know what woke me but once I'm awake I always find it difficult to sleep again. I laid there for a while listening to the boys snoring and watched my little man peacefully asleep, but that just pains me deeply. seeing him there so innocent and unawares. I'm sure that's probably a good thing that he doesn't understand and I certainly worry enough for all of us but I so wish he really did have nothing to worry about.
He had a very itchy bottom today when he woke from a nap and I'm suspecting he has worms, of all things. I spoke to the doctor about that and he agreed so we wormed him and the rest of the family tonight. I couldn't help but think why cant that be the only thing that's wrong with him? why cant he just be a normal two year old and have worms? Honestly this whole thing just frustrates me so much as to how damn unfair it all is.
I had a moment to talk to my daughter today which was nice. she came for a drive with Jayden and I as he desperately needed to sleep and wouldn't at home so we went for a drive and within five minutes he was asleep. It was nice as it gave Layla and I time to chat. We talked about a lot of things and of course Jayden was mentioned. See said she rarely thinks about Jayden dying and that sometimes she just thinks of him as a normal two year old until she sees his NG tube which then reminds her hes not. She said she thinks about her guinea pigs dying (and that's because she has had a few die) but she doesn't think about Jayden dying. I'm so glad about that as I would hate to think its on her mind as well. I told her how frustrated I feel sometimes about how unfortunate our family has been and she said; "mum, it could always be worse you know", and I said "yes, I'm sure it could, but that's difficult to see sometimes". and she said "we could be a family that lives in one of those countries that war is going on and all of us kids could be affected, not just one". She is right. Shes scarily right, and sometimes I do wonder where that old sole comes from within her. I wish by thinking like that it would somehow alleviate some of the pain and heartache but no matter how much I know things could be worse it still hurts as to how things actually are.
Jaydens nanna came to visit today which was really wonderful as he loves to see her, all the kids do and it gave me a chance to pop out and do something for myself. Jayden has become so clingy that I really cant do anything without him being attached to my hip. I have to say I don't mind a bit though but sometimes there are things I just cant do with him. Hes also become really needy of staying in the home. whenever we go out now to the park or to the neighbours is not long before he says "home now mummy". Its as if he suddenly has a wave of feeling very unwell and wants to lie down but he doesn't lie down when we go home he just hangs with me and mostly on my hip. He wants to be carried every where and just isn't himself. Its making me really suspicious as to whats going on. I don't know the specifics with Chemotherapy and how long it takes for them to bounce back after its finished but it just seems like hes not improving. there are moments in the day where he seems himself but they are fleeting and the rest of the time he just wants to sit and watch TV or as I said, sit on my hip. I'm still not completely convinced his lung is OK and am very keen to speak to the doctor about that but I know without an xray we wont know for sure.
Its so nice to have him home though and just having him with me when I'm cooking, doing the washing and just everyday stuff is truly magic. He loves to help me or just sit and watch and chat to me and I so love having him there with me. He constantly makes me smile with his little things he says and games he plays and I just couldn't possibly love him anymore than I do. When we went to bed tonight he asked me about love. I said to him as we laid down to sleep that I love him so much and for the first time he questioned what it meant. He said "love Luke?" and I said 'yes' then he said" love Layla?" and I said 'yes', then "love dad?" and again I said 'yes'. then he thought for a moment then said "love that?" and pointed to the ceiling and I said 'no' and he then, "love light", referring to the light on the ceiling and I said 'no' and then he thought again and looked at me and said "love you mum". It was the first time he has said I love you mum! Oh my god how nice it was to hear those words come out of his mouth. hes so clever and just so damn scrumptious!
I held his hand as he slept tonight and its so hard not to cry. During the day I can manage to hold back the tears because hes with me on my hip and I'm cuddling him and busy doing stuff. But at night hes sleeping and I have nothing to keep me from thinking about what he has been through and what could lie ahead. I know I should take the advice from my daughter and not look into the future but at night when I'm on my own and there is nothing to distract my mind ,I think. Its impossible not too. its what keeps me awake at night and what enters my dreams when I sleep. Hes my little boy and I m petrified of losing him. I know he would make such a special man. i know there are big things out there for him. i know if he got to grow old he would be a fabulous person and a good husband and father. I know this because he is a beautiful loving child and i wish he could have the chance to be that man. That man that would tower over me one day and give me a big hug, come visit me with his children and make me so proud. I love him so much and want that for him so badly and there is nothing I can do to make sure that happens, nothing. I hate that. I hate that I cant fix it, change it, make it better. All I have is hope. One small word that means so much to me right now. Hope.
I have nothing else, no bag of tricks, no magic wand and I feel utterly useless. Just waiting and hoping.
I don't know how I'm meant to do this. How I'm meant to get through this.
I know I need to start by trying to get back to sleep. Its now late and even though I'm truly awake now, I know i need to have sleep to get me through tomorrow. One day at a time. and no day is easy.