Sunday, 20 October 2013

Jayden has been a goof ball all day and has had us in fits of laughter for a lot of it. Precious little man who brings so much joy to our lives. Love him to bits.

It's late now. Everyone's asleep. I use to enjoy these quiet moments late at night when everyone was asleep when I could watch what I wanted on the TV and actually get to sit and watch it, and or read a chapter or two in a book. I can't remember now the last time I was actually able to focus on reading a book or really enjoy the time alone spent watching a tv show . The ability to concentrate on either left me the day Jayden became ill. In fact I feel as if sometimes part of my brain went as well. For I am forever finding it difficult to focus on conversations and my memory for things is useless without a diary . I know this is because my mind is full of concern for Jayden. So much so, that it has little room left for anything else. I also feel like with the loss of my normal way of thinking and living the feelings that replaced that in my body seem to consist of a big major chunk of sensitivity. It really doesn't take me much to cry, to be upset, or hurt, in fact any feeling seems to jump at me 100% stronger than before. I feel like I'm a nervous wreck, often.

getting back to my evenings now alone... Now my nights when I'm left alone I'm with only my thoughts. I busy myself during the day and there's always so much happening with kids in the house. But at night, no one Is distracting me, no one needs me for something, it's just me and my thoughts.
Most nights I hate this with a passion , especially the nights that come with the emotional waves. The nights where I find myself reaching for a sleeping tablet just to escape the thoughts that haunt me, as silence settles on our home.

Fortunately, Tonight is not one of those nights. I'm not on an emotional wave , Jayden had a clear MRI the other day and he's well. I know however it doesn't stop there . I'm very aware another wave will come , and more after that and before I know it another MRI in January. the constant concern of any unusual signs by Jayden will never cease and fear of his cancer returning will always be with me.

I spoke to another cancer mum today and we talked about how life is for us now. It made me think about how I use to feel before Jayden was diagnosed. " normal " was the first word that came to mind when I thought about that. For a brief moment when we were told Jayden's scan looks ok I felt that feeling again. Not exactly the same, as my mind knows better than to get cocky, but close. But other than those moments after you receive good news the " normal " feeling no longer exists in my life. And I know now as time passes it's a feeling I will always yearn for but have to learn to live without , and instead manage the feelings that are left.

I am grateful for everyday I have with my kids and when people talk about old people passing I feel happy for that person having been so blessed to have lived that long , rather than sad . When you enter this world you know children who have not been so fortunate . They never had a chance to live their lives. Knowing this and living amongst this really changes your perspective on this world and life. It's truly crushing and it makes you want to stand on every roof top in the city and scream it out so everyone knows. But more than that, you want everyone to care . That's the tricky bit . And that's the bit I truly don't get. How can people not care? The Facebook user I wrote to in this blog the other day has really stuck in my mind.

I went and visited a friend and her little boy in hospital the other day . Going back there to the wards was really hard . Really hard. I saw her at the doorway of their room and was welcomed with a smile and cuddle. Truly beautiful lady. One of those women you just can't not like, a treasure . On the hospital bed in the room sat her beautiful sweet boy . He sat with his back to me quietly playing with his mums phone. Watching home videos is his favourite. That reminded me of when Jayden was in hospital. He loved to see his siblings on video.
This little boy was sitting there quietly, so innocent, and cancer is robbing him from being a little boy and having the life he so truly deserves.
He has the most perfect beautiful bald heAd , perfect little frame, perfect little face, he has the biggest brown eyes (just like his mum) and he adores her so much. Perfect little man. But nothing in his life is perfect and I can't understand how anyone could not care. A walk into those wards and it's truly heartbreaking. I know what it feels like to be in there and I will always know what it's like to be a cancer mom. It hurts. Hurts like hell.

I wish I could take the feelings I felt for that little boy as I stood in his hospital room and place them into the hearts of every single person that is able to make a difference in this world. Let them feel how much I wish I could change this for him. I wanted so bad to give him a big hug but In That hug I wanted to have a cure. Rap him up in my arms and cure him. Fix him, give him back the life he deserves and allow his mum and dad to see him grow into the man he deserves to be. And believe me , he would be a great man. I'm not exaggerating when I say his father is truly one of the nicest, kindest, men I have ever met and a true gentlemen. Honestly, beautiful, beautiful fAmily. He would be destined for great things, I know it .

I was truly gutted when I left that mother and her child that day. Before I left I helped make their hospital bed with new sheets and it made me feel good that I was able to do something even if it was just to make them comfortable for a short while. because other than raise awareness and contribute to cancer research, I'm helpless. I can't change if for her son just as I can't change it for mine. And I hate that feeling. The feeling of complete helplessness for a situation you want so bad to change. I walked out the hospital that day and I felt an overwhelming sense of sadness that has become so familiar. The innocent of this world I once knew ( like a good friend of mine said recently) is gone . This is what I know now, and it's truly, sad.

- Posted using BlogPress from my iPhone


  1. Dear Leisl, it hurts so bad having opened that door! The feeling of helplessness is heart crushing. The sad dark spot that is etched permanenly in my soul that hits me sometimes out of nowhere - even in a happy moment, has changed me. Even so I'm grateful! People should be braver and take the plunge to help however they can to stop our kids dying from this hideous disease. Hugs xox

  2. Hi Leisl,
    Just love you all, truly beautiful family.I myself dont know why people just dont care.
    Special blessings
    June xxx