Saturday, 30 March 2013

Easter weekend




Jayden fell asleep in his playhouse tent today. He had a big morning at the park and is now fast asleep. I should be too. I tried but my mind will not for the life of me shut down. It just doesn't stop. Constantly zipping around with thoughts id rather keep at bay.

I'm looking at him and I can't believe how beautiful he is. His precious hair has gotten so long and his little face is changing from a baby to a little boy. I try so hard not to see into the future but its so very difficult not to. When I see him laying asleep as he is now I'm speechless as to how precious he is to me. How much I truly love him and how difficult it is to live knowing so much about his cancer.



It's the next day now and we have spent the whole day hanging around the house and only popping out to the park for a quick walk or play. The kids have been fantastic. Playing happily together all day. Just beautiful. I honestly believe the serenity was because of how happy we were that we are spending this time together, at home. this time last year we were in hospital and Jayden had been there for four weeks. he had not been home once in that time. So today was definitely a better way to begin the Easter weekend, and we are all aware of that.

Layla and Luke made Easter bunny ears for tomorrow and yesterday made cupcakes with Easter decorations. Everyone is getting ready for tomorrow and very excited. I'm especially excited about it because I remember how damn sad I was last year. I remember trying so hard to make it good for the kids but failed dismally in pulling it off. They were still excited about the Easter bunny coming and all I wanted to do was call the whole thing off. How could we possibly celebrate Easter without Jayden. It was truly damn awful. I was absolutely miserable, and completely devastated. Awful.

I'm so glad, so grateful, and so relieved that it is not the case this year. But as I say that I know it still is for others. There is no forgetting the heartache of others. Of my beautiful friend who won't have her son with her, as well and those that are in hospital now. Nothing can take away their heartache.

Special occasions are beautiful and special when you're able to spend them with the special people in your life. But are truly gut wrenching if you can't.

Tonight as I wait for my children to go off to sleep I'm so grateful we are home, all together. I'm looking forward to placing their Easter treats by their bed and seeing their faces when they lay eyes on them in the morning. I know that we are lucky to have us all at home. I know that it is a gift we are together and i know never to take that for granted. I try not to worry about how many more I will get and instead be grateful for this one. But damn its hard. I want to know i will get a lifetime more but I don't know that. I hate that I have to be grateful for each day, truly i do. But I know I have too. I know that's what gets me through and the only choice I have.

I am Looking forward to Easter and i will always hope with all my heart that i see so many more with us all together, for it truly would not be a Happy Easter if we weren't.



Thursday, 28 March 2013

Woke up yesterday after the procedure to my little man smiling in Danny's arms. Beautiful. I was so very happy to see them both. Jayden jumped straight into my arms and gave me the biggest and best cuddle ever. When we broke from the cuddle He had a very worried look on his face and when the nurses drew the curtains for me to get changed he freaked. He was so upset because he thought we were staying and kept saying "mummy, we go home now." Poor little man. He doesn't forget, I don't believe he ever will. I know for sure, we won't. Past memories often play back in my head, especially at night and are truly traumatic to go to, ones i try so desperately to suppress but often can't.

I dressed as quick as I could so he wasn't worried anymore and we left. In the car, and home.

Its now the next day and I'm waiting outside my daughters tutoring centre to pick her up. I've not had the best day. Tired, little cranky and struggling to get through it with a skip and a smile. My stomach feels like its in knots and I have to say I feel beaten.

The morning started fine. I woke to the voice of my smiley little man and was so very excited to see him as Danny and I went out last night with his brother and wife and I missed my kids terribly. When we got home they were all asleep and I had to wait until morning to see them. We had left at about 5:30 in the afternoon and it was a whole 12 hours before I could give them Cuddles again and tell them how much i loved them.

Breakfast went fine, I dropped the kids of to school then saw my beautiful neighbour. After that we took Jayden to the kinesiologist I had seen previously and danny now too. Jayden wasn't impressed, in fact not happy about it at all and I felt like a mummy lion desperately wanting to keep her cub from harm. As soon as he looked uncomfortable I was done. I just don't have any emotional energy left to make him do anything that will upset him in ANY shape or form anymore, or ever. So he and i exited earlier than we were meant to and danny remained to get some exercises we can do with him Jayden at home.

I think it was about then that i started to feel very weary. Emotionally and physically. the events in the past few days, going in for a gastroscopy and worrying what they would find, keeping it together for an evening out but feeling very stressed at the time. Knowing I'm not the best company at times as my life is consumed with stuff that most people have no idea about. Basically just feeling like falling in a heap.

It's a few hours later now and I'm laying next to my little man as he sleeps. As I watched him sleep I thought about how much I missed not being able to put him to bed last night and how happy I am that I am doing it tonight. I thought about How Danny's mum told me Jayden asked after me, and as he went to bed he wanted to know where I was and if I would be home soon. It dawns on me now as I think of that, how important I am to him. Sounds silly I know as its no doubt obvious but all I normally think about is how important he is and my other children to me. I forget how important I am to them. How much they need me. So with that thought in mind i then realised how vitally important it is for me to really look after myself. People say it all the time but i could never get past thinking about My children. Yesterday My gastroscopy came back as me having gastritis. Caused through stress. So now as I look at my beautiful little man I know I have to change. i have to start taking care of myself better than i have been. Whether its making time for meditation, going for a walk I just HAVE to do it.
Not for me but for my beautiful kids. That's the best motivation ever.


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Tuesday, 26 March 2013

I'm laying in a hospital day surgery bed waiting to have a gastroscopy. I have a history of reflux and get these done every four years, the last in 2011. Of course I've forgotten about my own health in the last twelve months and am now showing symptoms of reflux again so here I am earlier than normal.

All i can think about is my children and leaving them all sound asleep this morning. I wish this would be over quickly so I can get back to them.

When I left they were all asleep. Unusual because Jayden is usually up early and the others follow shortly after. But today when I woke he was still asleep all snug in our bed with Luke close by.

I tipped toe d around him while I got changed to leave and worried as I left that I wouldn't be here when he woke and he would be upset. I've thought about that the whole time I've been here until danny text me just then to say when Jayden woke up Layla went into him and carried him into the kitchen and he has been fine ever since. She's so beautiful. That message made me feel so good. And so proud of how much my kids love each other and look out for each other. I'm so lucky.

So I'm now waiting to see the anaesthetist and get this over with. I use to worry about these procedures but now I don't give it a second thought. Now I'm just anxious to see my kids.

Luke had to go to the dentist this morning and I'm worrying about him as well. His first ever filling and he was very nervous about it when we spoke last night. Fortunately Layla told him its easy and not to worry about it. When she says it he believes her when I say it he thinks I'm just being mum. Hopefully it is all ok and he's not too stressed.

Danny's with him and so is Jayden. It must feel different for Jayden to be the one watching his brother have a procedure rather than the one doing it.

I feel really tired, Numb and a little teary. I'm thinking about my children, my friend who lost hers and others I know with similar stories. It's tricky to get on with things knowing so much sadness.

I caught a taxi here this morning and found myself talking to the driver about Jayden, now that I'm here. the nurse, the anaesthetist., The doctor. All conversations lead to Jayden And as each person left my cubicle I know my story may have left there minds as well but I can only hope it remains in some and that with each conversation a seed of awareness is planted and that one day that will make a difference.

I'm going in now. Looking forward to drifting off to nothingness and my mind resting for a while and of course hoping for good results.

Thinking of these beautiful faces


-



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Monday, 25 March 2013

Other people

I'm sitting in the car in our driveway and Jayden's asleep. He's had a big morning, first going to Gymbaroo then a big play with his neighbour. It's the first time they have really played together since they have known each other and it was really beautiful to watch.

The magic of seeing him so happy with her though was clouded by an overwhelming feeling of despair. sadness within me from knowing my friend just lost her child to this absolutely crap disease. I woke this morning to find the news on their Facebook site and my heart sank. One day you have hope, the next day it's pulled from under you and your flat on your face on a floor of despair.

Another beautiful child. A courageous family, a loving family. A beautiful boy, a sister left to live life without her only brother and parents to spend the rest of their lives trying to work out how to live without their precious son.

I walked the kids to school this morning with that knowledge in my head. The knowing a beautiful boy has passed on, taken by this disease. A beautiful mum I've gotten to know through this horrific journey. Now destroyed.

I watched all the family's mingling, laughing, chatting, pushing prams and a feeling of emotional exhaustion came over me. I felt my legs go weak and i thought i was going to collapse. i wanted to. i wanted to fall. i wanted to get down on my knees and scream how damn unfair this is.

No body there knows and i sometimes think they don't want to know what mums with children diagnosed with cancer live day In and day out. To most people I imagine we are "the other people". Cancer is What happens to "other people". But the truth is all of us mums were those mums once. All of us had healthy pregnancies, healthy babies and pushed our prams through the school grounds, pleased as punch with our babies. We aren't 'other people'. We are the same. No different. The only difference is cancer picked our kids. It can happen to anyone.

when i walked through those grounds today i wanted to scream it out. i wanted people to hear about this little boy and really give a hoot. I wanted them to hug their kids and be so damn grateful to have them. I know when I'm with mine I think it constantly. I hear myself saying it in my mind always and really feeling it from the depths of my being. I will never ever take them for granted.

All day Today I watched my little boy, with fear consuming my mind. Will i lose mine? How much longer do I have. Every time I hug him I hug him like its my last. I never want to live with regret that I didn't give each hug my all. That I didn't soak every bit of him up with every second we have.

I sat in his bedroom with him tonight after bathing him and we played cars. All the while I was thinking of the mum of the little boy who passed. his bedroom. Her sitting in it. I remember when Jayden was first diagnosed and after surgery we nearly lost him to meningitis. I remember the first night I came home to be with the other kids and I sat in his room. I sat on the chair next to his cot and I cried so hard. So hard, hoping with every tear our lives would return to how they were and he would be back in his cot the healthy little baby he was. I will never forget that moment or any other moment there after.
Our lives didn't return to how they once were of course and as days have past and now a year we have had to learn to live the life we have now.
I thought about this woman and my heart was full of pain. How does she learn to live her life now?

Now that I'm in this world I will always know children suffering, dying and it will never stop hurting. We have our little man with us now but so many don't. There's certainly nothing fair about childhood cancer and its not until your living it you truly realise how big it really is. Not rare.




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Saturday, 23 March 2013

Changes

I thought about the song "take it easy" today by The Eagles. Every time I found myself bothered by stuff and things i had to do I sang it to myself. Although I don't really need a reminder to grab every second of the day and enjoy it. I only have to look at my son and I know that's what I should be doing, just as he does.

When he insisted on going to see our neighbour this morning even after I told him she wasn't there, I followed. I walked with him down there explaining to him she's not there but he wanted to go anyway and I followed anyway. When we got there and knocked on the door and she didn't answer he wanted to stay and sit on the seat out front. I sat with him. For over an hour. I knew I had a load of washing at home to hang out and lunch to prepare but we just sat. Together chatting and playing games on my phone as well as watching all things "wiggles". A beautiful breeze was blowing and I thought about how nice it was just to be sitting. Sitting with my little man. I only felt guilty I wasn't with my other two as well whom were home with dad. I hadn't seen much of them since the day before and would have loved them to be hanging out with us too.

Both Layla and Luke went to "dads camp" last night with their grandad as danny unfortunately had to work. They had a ball. It's a night organised by the school and the local church when the dads take their kids camping on the school oval. They have activities for the kids and the dads and kids and its a wonderfully fun night. Jayden and I got up early this morning and were very keen to see them.

We didn't go over till about 8:30 even though we both wanted to go much earlier and helped grandad pack up. it was so lovely to see the kids so happy. When I got there Layla was off with her friends and so was Luke how quickly they grow up where mum just isn't the centre of their universe any more. that always makes me sad. happy for them to be happy but sad they grow up so quick.

I helped grandad dismantle the tent and as I did, I looked over to see Jayden happily sat under the tree right next to us playing with a glow bangle he found in the grass. Honestly he sat there quietly content to be outside with his glow bangle for ages. He truly is such a beautiful little soul. So content and happy.

The kids came home with us shortly after we packed up and happy as they were they were also very tired. to bed early for everyone tonight.

So now I'm sitting writing this blog entry and I intend to watch a movie for the first time in I truly don't know when. But sadly as I sit here anticipating I will enjoy some "me time" I'm feeling lonely. Essentially I am, as no one else is with me but I don't think I enjoy my own company anymore, not near as much as I use to. Left alone I think of everything that I fear and left alone i just want to cry. cry because i can, because no ones watching and cry just because. just because its damn hard. its hard to keep up beat, live the moment without thinking about the future. really hard. really, really hard. So my own company isn't what a call a good time anymore. In fact I lot of the things I use to enjoy do nothing for me now and often bring me sadness instead of joy.

There's no doubt I have changed as a person since my son entered the doors of the children's hospital last year. My friendships have changed, my relationships with my loved ones have changed and what matters most to me has not changed but gone up a hundred notches, and some. What worried me before I couldn't care less about now and what frightened me before doesn't even make me squirm. For its only now in this journey do I know what really matters, who really matters and what fear really is. The thought of losing your child is far scarier than anything you could possibly imagine and hurts far more thAn any words said or pain I have ever experienced previously. It is beyond a true description.

So I sit here ready to do what I would normally look forward to and all I want to do is jump back into bed with my beautiful boys and snuggle up to my little man. Because that is where my true enjoyment in life is. With my children.




Thursday, 21 March 2013

Take it easy

I'm laying next to my little man as he naps and soaking up every bit of him. So precious. So innocent and so content in his dreams. We had a really busy day and I'm not surprised that he's all tuckered out. A little disappointed it had to be that way and sad that I didn't remember just to "take it easy". I read recently an article a woman wrote who's son had died and she advised all parents to "take it easy". I thought those were beautiful words and sums up what we should be doing as parents beautifully.

Today however that's not what happened. Danny worked today so I was flat out getting kids to school and Jayden hates it when I'm busy but I find it good in that it takes my mind off other stuff. Jayden and I walked them over to school then dropped into our neighbours for a quick coffee. We didn't even get to really enjoy it as I had to go to a doctors appointment at 9;30 so not long after arriving we were leaving.

Normal stuff to me but not to a two year old whose happy playtime had to end. We whizzed down to the doctors just in time but only to find I'm an hour early. normal stuff but i wanted to cry. the simplest slip ups bring me to tears. So we left and went to the toy shop as a beautiful friend had organised for us to pick up a pirate costume for Jayden for his birthday in May. A little early I know but you can never be too prepared. Jayden had a wonderful time playing in the shop but again I had to stop him playing and pack him up to go to the doctors. By this time he had really had enough and was nearly asleep on the way there.

We got there just in time and didn't have to wait long before we were called in by which time he was very grumpy. When he set his eyes on the doctor he began to cry and I had to explain to him it was me the doctor was seeing and not him. He sat on my lap during the consultation and at one stage I thought he had fallen asleep. Really nice doctor whom always asks after Jayden when he's not with me and today asked how I was doing. I told him about what's been going on and found myself saying "all I want to hear from somebody is that everything is going to be ok and no one can say that". He said to me " you clearly have yourself well educated on this topic of his cancer and a sense of realism about the outcome but he does have a chance and miracles do happen. Try to believe in that".
With that tears streamed down my face and I wanted to give him a big cuddle. "Thank you for saying that" was all I could muster and not long after we left.

After the doctors we had to whizz home yet again to grab some lunch, organise afternoon tea and dinner and then race over to take Layla to tutoring. Jayden was yet again yanked away from his happy playing and not at all impressed. we Dropped her off at her tutoring and when I told him we now had to get back in the car to go back and get Luke, well, that was it. He spat it big time and who could blame him. He didn't get one moment to truly relax all day and neither did I. Stupid. I forgot to "take it easy", most of the things we did today could have waited but i squeezed it all into one day instead. I think maybe I do that in order to take my mind of things but if anything I'm left feeling worse because I didn't take any real time to soak up my little man.

By the time we drove back home though he was fast asleep and I gently transferred him into our bed. I couldn't even lay with him for a while as I had to race over and get Luke, leave them both with my dad whom was here then race back to pick up Layla.

I'm now back from picking up Layla and finally laying with my little man. Exhausting. He's been asleep for sometime but I know he would need it so I'm not going to wake him up.

It's a few hours later and I'm super tired myself. About to sit and read to my beautiful boys and finally "take it easy".






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Wednesday, 20 March 2013

Article

I vomited tonight after dinner? Not Jayden, thankfully. I have no idea why but I'm definitely not pregnant, sadly. No more babies for danny and I. Wish I had of started younger as I would have certainly had more. Feeling very stressed and a little browned off about stuff and things and extremely tired.
The other day I received a text message from my dear friend which contained a recent article on proton beam therapy and ATRT kids. I posted it on Jayden's Facebook page because it seemed like good news, finally. Not great news as a CURE would be greAt news but it said that 9 out of 10 children treated with proton beam therapy with ATRT were still alive after 2 years. Of course unless you read the full article you wouldn't know two of the children had relapsed in that time and some were much older than Jayden so they would have had full brain and spine radiation and many other finer points.
Of course i hadn't had a chance to read the whole article, and i posted it on Jayden's Facebook page without doing so as i was excited about the news and wanted to share it. I was beginning to feel good about the prospect of Jayden being with us for a couple more years. Its sad, very sad that our hopes are measured in small amounts of time rather than the lifetime we assumed we would have with our son when he was born. Now we get excited about the possibility that he may get a couple of years. In fact, every day we get is a huge bonus and worth celebrating.
Of course the document wasn't as i thought it was and someone was able to point that out to me and it pissed me off to say the least.
Why cant i get a piece of good news (as small as it was) and it stay good news. damn it.
Sometimes I think I would be better off not knowing all the crap statistics, just like Jayden. Then at least I would just cruise through each day without thinking about it as Jayden does.
I still haven't read the whole article and i don't think i want to. what is that saying? 'Ignorance is bliss?'
That's my whinge for today. I am now going to lay down with my boys and hope this pounding headache i have goes away.
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Tuesday, 19 March 2013

The sound of my kids laughing as they play is undoubtably the best sound in the world. luke always knows how to make Jayden laugh the hardest, its not just your little giggle kind of laugh but the big "from your belly" laugh. Every time I hear it I smile. Sometimes its so infectious I find myself laughing as well, even without knowing whats so funny.

I just walked in to see what they were laughing about and both of them were sitting in the bath with wash cloths on their heads, wearing them like hats. Obviously hilarious to them. I stood there listening to them and smiling as they sat in the bath laughing and making fun, but in the back of my mind i was worrying and my thoughts made me sad. i thought about how wonderful their relationship is and how each day it blossoms more. As Jayden grows older the four year gap between them seems to get shorter and their closeness stronger. I know luke loves him dearly. They may argue sometimes but he's got his back always. I saw him accidentally kick a ball into Jayden's face today and you could see Luke was horrified he had done it and raced right up to him to give him a cuddle. they didn't know I was watching at the time. It would have hurt but with Luke's arms around him he didn't cry. He did say to Luke "that really hurt luke", which made me smile. Luke cuddled him for a while longer, said how sorry he was and not longer after they broke away from each other and continued playing. A beautiful moment that again made me sad.

Every time i see them together it makes me smile but want to cry all at the same time. Its a crap feeling. not being able to truly enjoy watching their relationship grow without worrying that one day it may end. Worrying how they will cope. How Luke will cope.
I get the same feeling when i see danny and his brother together. watching them and hating that luke and Jayden may not get what they have.




I hope with all my heart they do. They are both such gentle souls, big sooks, and truly loving brothers. I'm so proud of them and how well they interact and look out for each other.
I'm so glad for Jayden that he has his siblings because they truly have been a big part of getting him better. I can only hope their relationship is so strong that it helps Jayden to defy the odds.





Jayden and i went to the river this afternoon while the kids were at school and just hung out, went for a walk and played on the playground. It truly is so important to just stop for a while. Feel that breeze I so desperately wanted to feel once and breathe. To take that time out with my son and just be. Be with each other, no one else, just us and the seagulls. Those times truly are the best times off my life. A moment shared alone with anyone of my kids is truly the best moments ever. I know I need to do it more often. For they are so very precious.











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Sunday, 17 March 2013

I'm sitting in front of the computer and I was going to blog about my day, about the last two days. But Ive just finished reading an entry on facebook by a beautiful woman who I met through this crap nightmare of a journey, and I find I cant. She too has a son with ATRT. He was diagnosed last year like Jayden but in April. He sadly relapsed during treatment and is now fighting for his life. I don't even know where to begin.  I wish for her that her story read so differently, that her child had fought the odds and recovered, for he so truly deserves a full life. All children do. To sit here now and write about my last two days just doesn't seem right. Every time I hear of a child relapsing I dont feel right about writing about mine. I feel a certain sense of guilt that my child is well and theres isn't. I know it may sound ridiculous but when you enter this world of childhood cancer I'm pretty damn sure its normal.

I wanted to blog today about taking my boys out for breakfast yesterday and meeting a dear old man at a cafe. But the thought of it saddened me rather than made me smile at the time. He watched me with my sons and after I smiled at him he said "you are very lucky, this is the best time of your life, when your kids are young". Hes right I thought, seeing him on his own at his table eating his breakfast, old as he was and I assumed his wife was no longer alive. Lonely, no doubt, but once wasn't, when he had young children in his home. When laughter filled the rooms in his home and the sound of litttle feet, but now is most likely all quiet. There is no doubt in my mind that he is right, that this is indeed the best time of our lives, when our children are young. Yet for us and so many it would feel like the worst. Instead of my friend enjoying this time with her son she is hurting beyond belief. She will not get to truly enjoy the "best time of her life" with her son and my heart truly breaks for her. Instead this has become the hardest time of her life.

I feel so sad for her and I know it makes it harder for myself knowing others are suffering and feeling for them, but how can I not. I know their story all too well and I know how hard their journey has been. I wish so much I could change it for us all.


Kinesology on Friday got me through the last couple of days but it wont take away the reality of this life. Nothing can. I know that and I knew it wasn't going to work miracles but what it most definitely highlighted to me was the importance of investing time into healing myself, in whatever way I can. This is huge. this life, this journey is so horendous. When you enter the world of childhood cancer, not only do you watch your own child suffer and you fear for their future beyond belief but you also watch others. You befriend other parents and you see their hurt, their pain in their eyes, and you see their childrens pain. We spent most of our lives shielded from this world and not even really knowing it existed and now we live it every day amongst many other parents.

It is without a doubt the hardest journey any parent has to travel with their child and  to do it without some form of help is just not possible. Jayden is with me 24/7, never leaves my side and often wont let anyone do anything for him except me. He wont let dad take him out of the car seat or put him in it. He wont let dad get his cup of tea etc etc. So I know I need to make sure that the time I have with him I am truly making the absolute most of and in that time I am 'present' as I can be. When I'm struggling and really sad its difficult and that's no good for him, its no good for any of the kids. Getting up everyday and putting one foot in front of the other can truly be challenging and some days worse than others. However its how we live now, so we just do it the best way we can.

Jaydens next scan is in April and I'm shitting myself beyond belief, there is no question about that. And as I hear of children relapsing around us I am fearful all the more.
I'm still saying to my self everyday the sentence I did at Kinesology : "I'm loving and present with my children with joy, and what will be will be". But I know I am a long way from truly feeling that. I'm not sure I ever will fully accept what "could be" but I hope that I can come to a place of peace for what is "now".





 

Friday, 15 March 2013

Kinesologist

Thursday

Finding it really difficult to focus lately and i wonder if it has anything to do with the antidepressants I'm taking or just the fact that my thoughts are constantly a chaos of fear, worry and sadness. Bit of both I'm guessing. but i don't think I'm in a position to do the alternative.

Jayden and I had a visit from a special friend today. A wonderful lady whom I've mentioned before who is living her own nightmare. I always enjoy seeing her as she makes me feel understood and her presence is just special. I can't explain exactly why but when I'm with her I feel a small sense of peace. Maybe it's just because she understands or maybe its because she has an inner spirit like Jayden one that when a person is taken on a journey like theirs is unique and beyond anything anyone could imagine unless they lived it themselves. One that gives you a slap in the face that your lucky, your blessed, and you should embrace that.

Might be talking gibberish but I'm hoping this is making sense. It does to me but hard to put into words I think.

whilst she was here we talked about everything relevant to our journeys and she made me realised that in some ways I'm searching. I'm searching for a sense of peace, a place I can go to in my mind that will make it possible to breathe. A place where I stop thinking for a while and just live. One that can take the fear, worry and anxiety away if only for just a moment. I think people with a strong faith have that place. i don't have a strong faith, i wasn't raised in a family who had a faith. I wish i had been for i believe it would give me that place, at least i hope it would.

When she left i did some searching on the internet. i googled 'spiritual councillor' and came across a place locally that advertised kinesiology. I knew nothing about this only that a lovely lady suggested it to me some time ago. I thought it a coincidence it came up under my search and that it was nearby so I rang them. I spoke with a man that would have had to have been the most understanding, kind, empathetic, person I had ever spoken to on the phone whom made me feel so safe and heard it was truly wonderf and just what i felt i needed. A Spiritual man who specialises in trauma counselling but suggested I try kinesiology first and if I didn't feel it was right for me he would be happy to see me.

Friday

So it's the next day and I'm now laying In Bed between my two boys. I've seen the kinesiologist and its evening. Before I go into it though I want to cover today.

Jayden woke up super early this morning, no idea why but was cranky and made for a tricky morning. He stayed that way for most of the day. It really worried me as I knew something was up. Take me back over a year ago and I would have been thinking , virus, ear infection, two year old molars. Now those things don't even enter my mind. I wish they did. Instead I'm asking him "does your head hurt? Up hear?"(Touching his forehead.. "Does it hurt hear?" (Touching the back of his head). Honestly, I wish so much all I was thinking was the thoughts I was privileged to have before.

His mood made for a difficult morning and one that i was finding difficult to get through. my head was pounding but more from stress than a headache. I hate feeling that way around him as i want to make every second count but sometimes the stress of it all gets the better of me. possibly the very reason why he was struggling...because i was.

we went and saw my beautiful friend Nadja at lunchtime and that helped. Afterwards we came home and there was no way I was going to get anything done. I kept reminding myself that it didn't matter, the washing and dishes will still be there waiting as I know that, he knows that. chores really don't matter in the big scheme of things, we learnt that long ago, so we hung out until the kids came home from school and eventually I got a chance to get some things done, I wanted to make it easier on danny as I knew I was going to be out for a while with my appointment.

My appointment with the kinesiologist was in the afternoon, right about dinner time so I asked Danny's mum to come over and help him while I go. Friday is a difficult day for Danny with work and as always his mum was happy to help. Love that woman.

I went to the address I was given and upon arriving I was given a form to fill out. as i looked through The questions i immediately began to think this was not for me. I'm a huge sceptic, something I learnt to be from my dad and it just didn't seem what I was looking for. i was a tad anxious and ready to run. However, I was there and decided, why not? What harm could it do?

The lady i was to see appeared shortly after. A calm casually presented woman I'm guessing in her 40's whom I immediately fell at ease with. She introduced herself and showed me to her room. We spent the next hour talking about my situation, how she could help and where to go from there. I have to say the treatment that followed was unusual, easily written off as a crock, but by the time I left, there was no doubt I felt different. I can't explain exactly how different I felt or exactly what they feeling was, just that it was different.

I came home, Danny's mum was sitting with luke on the lounge and i was so happy to see them both. Big hugs all round and so appreciative that she came all this way to help. Seriously this woman is wonderful.

I then raced down to see Jayden who danny was putting to bed.

When I walked in the room the lights were off and I could see Jayden was just about to drift off to sleep, I gently laid next to him on the bed, snuggled up close to him and whispered "I love you". He opened his eyes, wrapped his arms around my neck tight and fell back to sleep. i laid there with him, soaking up his every breath and every inch of him. Truly a beautiful moment that i didn't want to end, however I knew Luke was waiting for me on his own in the lounge.

i returned to Luke after I was able to take myself away from the beautiful cuddle I was having with Jayden and joined him in front of the TV. we sat together, cuddled up on the couch and talked and talked, about school, friends, boys, girls, it was brilliant. Layla had gone for a sleepover earlier so sadly she wasn't there with us but it meant for a special moment with luke and i on our own.

Eventually we went to bed to join Jayden and we laid there in bed chatting again. It was really beautiful.

It was the nicest evening and I couldn't help but get the feeling my appointment earlier had a big 'something'to do with it. From the moment i came home i just felt so in tune with my kids. so present. so able to really see, hear and feel them, with no other thoughts in my head going on at the same time.

Kinesiology works on reprogramming your sub conscious. It's all very unusual, well for me it was and not something i would normally go for. Before I left she asked me to take a photo of the sentence we worked on and say it to myself, in the morning and at night. Below is the photo of that sentence. It's the bottom one.




i know its no miracle, but if its going to help me be a better mum through this awful damn nightmare, and make all my kids lives a little happier, then i think its worth a shot. their worth it.




One of the things she also said to me In The beginning of my appointment with her is "Jayden is your best teacher". No truer words have been spoken. he knows how to live in the moment.

Love my brave little man.

Tuesday, 12 March 2013

Yesterday's blog

I often write in this blog when I'm in the thick of an emotional moment. i don't wait until i come out the other side i just write it down and put it out there.

today i read my one from yesterday and a part of me felt guilty for feeling those emotions when i know people who are facing far worse scenarios and instead i should be thanking my lucky stars we aren't facing that right now.

its hard though to remain positive and a part of me is scared to. scared to say "everything is going to be ok" as if i go there and feel that i have so much further to fall if it isn't.
so i remain quietly hoping and praying it will be ok but also knowing the very real odds we are facing.

i think often i feel so angry at the world and how unfair it is. that my beautiful little man has been through so much already and facing a very uncertain future. i then get caught up in the unfairness of it all however i know deep down its a waste of precious energy. i know no matter how angry or upset i get it won't change today, tomorrow or yesterday.
I wish it did, but it won't.

every morning i follow Jayden's lead and when he smiles at me i smile back. the biggest cuddle follows and with one foot in front of the other we face the new day.

i will have moments where im so low its crap but i will continue to hold on to the happy moments i share with my little man and other children.
i know i will never give up hoping all will be well. But neither will i stop being sad and fearful of the future.
That is the life my family lives now, just as it is any family who has a member diagnosed with cancer.

I know i will still stand in the shower like I did this morning and think how I wish I didn't have to get out and face another day of sucking it up, trying to remain positive and grateful. A little part of me will always want to fall down and just cry. But I know it won't achieve anything.

So off I go, just like every other parent facing challenges and get on with my day.
My little mans lead I will follow,
His grin from ear to ear ...




- Posted using BlogPress from my iPhone

Monday, 11 March 2013

breath of fresh air

Last night I had yet another awful nights sleep. With the help of a Valium I managed to stop thinking about stuff and finally drift off but not before I spent a good hour or so thinking, worrying, stressing.
It just doesn't stop. There is no off button to switch to stop the fear or worry about the future and the more I hear about others the more I worry about Jayden. How do I not? Its not possible. So many people have said to me at different times things like; "isn't it great hes all better now?" or "so pleased things are back to normal for you all". Its weird because nothing could be farther from the truth. I find myself not correcting them, because it seems futile. They wouldn't understand, how could they? Its frustrating though, as I feel that  there is a certain expectation from those people that you should now be jolly and getting on with it. If only it were that simple. 

The nights are the worst and I often find my self anxious about going to bed. Because I know once I get there I'm laying down doing nothing but alone with my thoughts. the days i can keep myself busy doing stuff and things but the nights are quiet. Nothing to distract me from thinking about the past, the present and the future. Nothing to distract me from the fear and  the sadness and I often find myself crying myself to sleep. I'm desperately trying to find a away to avoid this scenario and often get out of bed soon after laying there because the thoughts can be so overwhelmingly sad that I just get so exhausted going there. I then keep myself awake in the hope that I become so tired I will sleep as soon as I go to bed next. However it doesn't quite work that way and like last night I wound up becoming overtired and even more anxious. Nothing was going to get me go to sleep last night and after spending so much time in that head space, revisiting past events and thinking about the future, I just had to get out of it.
I hate that I then rely on medication to get through this nightmare and hate to admit that I cant do it on my own. I'm not sure that anyone can, at least I don't know how they do.  

A simple conversation with Danny and I today, about the future, bought tears to my eyes. We cant plan the future like most people do we have to accommodate for the possibilities of the future and those possibilities a awful. The "if this happens" then we have to think  about "this" and so forth. Honestly I get so exhausted some times I just want to scream. I just want to yell out  "enough is enough". I want to stop living this sadness, the heartbreak, this life of "what if" and "when".

My beautiful man is taking his afternoon nap as I write in this blog and I'm so grateful he is with us. Not a day goes by where I don't see his little face first thing in the morning and thank the heavens he is with us. and all day I'm with him I'm so grateful for his company, his smiles, his enthusiasm for life, his ability to make me laugh even when I m at my saddest and his cuddles are the best in the world. He truly has a gift that brings us joy every moment of every day. Sure, hes a two year old and sometimes hes very cranky. Hes very bossy too and he lets you know if hes not happy, but for most of the day and night he is like a breath of fresh air, he cools your mind like the air cools your face, and with it brings a peace that no one else can bring.
Once i feel it though it makes me cry inside for I don't know how I could live with out out that little "breath of fresh air". I know I should live in the moment but sometimes I get so fed up with the fact that I have to. Its just so unfair. I want to be able to look at him and truly believe I will see his face on a grown man. truly believe he will beat this awful cancer and live the life he so truly deserves. But its so hard. Its so heartbreaking and so very hard.

I'm going to stop now as I hear his little voice. My beautiful little man whom I so hope will become a man.  


Sunday, 10 March 2013

Weekend

I've been trying to write this blog for the last couple of days but either haven't had the moment to do it or when I have, I've been too tired and opted for sleep instead.
But now its morning, Sunday morning. My kids are happily eating their breakfast and Danny's asleep as he worked late last night.
No doubt I will be interrupted many times but I will give it my best shot to finish.

Friday morning was the last time I wrote and friday day proved to be one of the best days we have had together as a family in a long time. I think we were all on a mission to make it fantastic and it was.
We kept the kids home from school that day and took them to a water park called Adventure world. we had passes given to us for Xmas from our wonderful gentle giant new friend and we have been meaning to use them ever since but haven't until now.

It was a significant day. It marked the first day of a new year with Jayden. We hoped as a family this will be how we remember this time of year from now on, instead of how it was one year ago today.

It turned out to be a beautiful day. Perfect weather. The kids were so happy to be outside. the place was quiet so no cues for any rides. And we picked a perfect spot to sit under a beautiful big gum tree in the park overlooking the toddler water playground.

Jayden and I must have sat together on our picnic rug for hours during the day just chatting, snacking on the picnic lunch we bought and watching other kids and picnickers enjoy the day as well. I haven't felt that relaxed in a very, very long time. And he was the happiest I've seen him and the most content. We all were. Just beautiful.

Danny got his work out done for the day by running up the stairs to go on the slides with the kids all day and they were stoked he was with them.

Honestly it was just perfect. Exactly how we wanted to mark that day. A beautiful, fun and perfect day with the family, full of laughs and beautiful moments.
When we finally headed home later in the afternoon Jayden was asleep in the car in no time. Perfect.

I'm so happy we had that day together and later danny and I spoke about making sure we do days like that more often. So I'm on a mission to plan the next one. Doesn't matter where, just as long as we are together as a family and having fun.









Saturday

Saturday the kids woke up still tired from the day before and wanting to stay home rather than go out. So we all hung out at home for most of the day. It was also ways too hot to go out anyway so good choice to stay indoors.

The Problem with staying at home though is I tend to busy myself with chores to do and don't spend the time I should with my children who are on other days at school.
Jayden and the kids were getting quite frustrated that I would get up and put a load of washing on and then again to hang it out, put it away because it dried so fast and so forth. Jayden wasn't in the best of moods and that would be why. Kids are so easy to work out if you take the time to hear them. I so often forget that but try to remind myself as often as I can. Travelling this journey has certainly highlighted it for me. Highlighted what's important and how I should be spending my days. Chores will always be there but my kids, well, they are just so much more important. Time with them is precious and I try to spend as much time as I can and more, as that's truly what matters.

By the afternoon we were all going a little crazy from being kept indoors and decided to head down to the river for some well deserved outside time. Fortunately it was cooler outside by then and a beautiful breeze had arrived. We know it here as "the Fremantle doctor".

For the afternoon we spent building sand castles in the sand by the river and playing on the playground nearby. Kids and parents happy and relaxed.



Im so glad we did venture out in the afternoon as the day was beginning to get very tricky.

Like all days you try and keep them as normal as possible, remain as busy as possible in order to keep your mind occupied but no matter how hard you try there is no getting away from living under this dark cloud. I can never think of the right words to explain what that truly means but I tried to to my sister today. It's that never ending feeling of dread and despair that Jayden's cancer will return. The knowledge of it being a possibility and the knowledge that many we know are living that very nightmare now.

Before we went out that afternoon danny and i had a chance to sit down and chat about that very real feeling. the kids were happily playing in another one of Layla's elaborate cubby houses and i had just finished talking to a friend of mine. She is living the very nightmare we fear each day. An incredibly courageous woman whose courage I admire immensely. After I got off the phone to her my heart felt heavy and the sadness kicked in. So many people I know now through cancer. Each battling their own journey and its hard not to take on their burdens as well. I want to cry every time I think of their lives they are living and I want so bad to change it for them. For us.

I sat with danny and we talked about those feelings. About the dark cloud we live under. For the first time in sometime he talked to me about how he has been feeling. The other day he did some relief teaching and he told me he now knows he could never teach kindergarten children. He said on that day he had to take a kindergarten class and found himself on the verge of tears for the duration of the class. he said he had to keep reminding himself to focus on the job for if he didn't he was sure to cry. For him seeing all those kids and being amongst them was too close to home, a very real reminder of what we no longer have. the promise of tomorrow. i know no one does but most are able to plan for the future where As we cant. we just plan for tomorrow and hope we get the next tomorrow and many more to follow.

i found myself the other day saying no when the secretary from the college i was asking for an application for luke to go to asked did i want a second application. I put the phone down after speaking to her and sat in silence thinking about how a year ago I would have said "yes, of course". But now I don't know if Jayden will still be with us and that's truly crushing.

Its late in the afternoon now and Sunday.

I'm laying next to my little man and luke is to my left. the pair of them are slowly drifting into sleep as i write this blog. I'm anxious. nothing unusual. But i had been thinking about a friend, wondering why i don't hear from her anymore, the whys, the what happened and then i hear Jayden say "mum". i turn to him and said, "yes darling" and he says to me "mum, i want go to school". i look at him, holding back the tears, glad for the darkness so he doesn't see my eyes welling up and i say " one day darling, one day you will go to school". with that he closes his eyes and i watch him fall asleep. my face close enough to his to feel his breath and i begin to quietly cry.

looking at him makes everything in life so much clearer. no friend, acquaintance, amount of money, job, whatever has more importance than my little man laying in front of me. Nothing in my life is, or ever will, be as important as my children.

Jayden shows me everyday what matters, what I should be focusing on. He has taught me things I never was clear about before.

I love him beyond words. His little face, sound asleep. Nothing means more to me than this little man and his brother and sister.





I take a deep breath in and wipe away the tears. Snuggle in to him tight and hope sleep comes quickly so I can see his smiling face again tomorrow.




- Posted using BlogPress from my iPhone

Thursday, 7 March 2013

One year yesterday

Yesterday marked the one year anniversary that Jayden was admitted to hospital and our nightmare as a family began.
Leading up to that day we all felt the significance of it. I was prepared to right a lengthy blog recollecting that day and time and including pictures of that time. But as I sat in front of the computer last night and flicked through photos of that time I couldn't. I couldn't bring myself to remember that time and write the feelings we experienced down.

That day marks the beginning of a life we could have never imagined. One full of pain and emotions that could not have been experienced previously in any other circumstance. It marks the beginning of a life we live day to day, minute by minute and a change in all of us that will never be reversed. A moment in time we all wish never occurred and one we will live with forever. I didn't need to recollect those feelings and emotions as they are still with me everyday. I didn't need to remember that time in detail for its there in my mind and remains forever.

In order to take myself back to that time is to remember feelings that I've taken so long to learn to live with. Feelings so overwhelming sad and shocking that I could not bare to bring them up in detail again.
I've never read back my blogs of that time because I'm afraid of how it makes me feel so to write it again is equally overwhelming.

I talked to danny about it in the evening and together we couldn't go there either. We spoke briefly about it then found ourselves sitting in silence. Silently remembering that time but not speaking. Neither of us can go there. I think if we did it would remind us of the time, the seconds before when we were like everyone else, a normal family with cancer free children. that hurts. that hurts beyond words that we are no longer that family and that day marks the day when that happened.

So instead I chose not to blog at All. To instead silently remember that time, the significance of that day and then let it go.

Today is the day after and today we have decided to take the kids out of school and celebrate the beginning of a new year with Jayden. One full of good memories, happy times and times spent together as a family. A new year that we will hope with ever inch of our beings that we shall not ever be separated as a family ever again.
That is how I want to remember this day. Not yesterday but the day after.

- Posted using BlogPress from my iPhone

Wednesday, 6 March 2013

This time last year

It's late and I'm finally in bed laying next to my little man. He's sleeping diagonal across the bed as always and danny and I are squished at either end. Luke's to my other side sleeping soundly as well.

I've just put my daughter to bed after sitting up with her to have a very much needed talk. We talked about a lot of things and what came out of it was a realisation that I haven't been there for her like I should be. She often asks me something and I forget or don't hear and she pointed that out to me. She's such a quiet child and keeps to herself so much that she easily gets forgotten about and clearly thats what I've been doing.

I felt awful. Her behaviour at times is a direct result of my parenting or lack there of. I'm so preoccupied a lot of the time with Jayden that I often forget about the other twos needs. Sometimes their needs are obvious and those are the ones I'm on to but the subtle needs, I'm missing, I'm just not seeing them as clearly as I use to be able to.

We had a beautiful talk though and whenever I do make the time to do that I always walk away feeling so good that I took that time to do that. I love her so much, she truly is a beautiful kid with a huge heart that is struggling herself to deal with what's going on in our lives.

She mentioned tonight out of the blue that when we were driving home from Nannas on Sunday night in the evening she remembered the first night Jayden was in hospital. As we drove in the darkness she remembered leaving the hospital that night with dad and Luke, leaving Jayden and I behind. She remembers it being dark and she remembers crying all the way home, frightened for Jayden.

As she told me how she felt that night my heart broke. I truly don't know even the half of it of how my kids have been affected by this nightmare. I talk about how I feel often, because I can and I'm able to articulate it but I have no real idea how hard it must be for my kids.

We didn't talk too much more about it as I could see she didn't want to say much more. I think as time goes on more bits will come out when she is ready to tell me. But I wanted her to know I will always be hear to listen and I hope next time I don't miss her cues.

It was only the other night that Luke talked about that time as well. He told me too that he remembers crying after he left the hospital and waking at night to find me not there and crying himself to sleep again. That's what he remembers of that time. Crying himself to sleep at night when he would wake in the middle of the night to see our bed empty. When danny would go to work he would jump in with me but all of a sudden I was gone and he had to learn very quickly to get back to sleep again on his own. By Crying.

I get the feeling we are all very aware that it was this time last year that this whole nightmare began and we are all hurting. I know for me as the days lead up to 7 th March I'm struggling even more. Remembering that morning. The first night. The fear in Jayden's eyes when his first line was put in. The sadness that fell over him when the kids left us that night at the hospital to go home and he couldn't go with them. He cried and cried. He didn't understand and at that point I didn't really either.

What a nightmare? Truly no other way to describe it, only you don't get to wake up from it.

As a mother all you want to do is protect your children. Keep them safe, away from harm,not see them sad or hurt.
I cant even begin to find the words to truly articulate how hard it is to know that your kids have been exposed to such hurt and sadness and not to have been able to stop or prevent that..

When they talk to me about how they felt its truly crushing to hear. All my kids have been hurt, exposed to sadness they should never have been at this age and been forced to deal with emotions they have probably never felt before.

I'm laying here now lost for words. I know how I feel but sometimes I just can't find the right words that can truly describe what I want to say.
Words that are powerful enough to describe it correctly. I don't think there are any.

This time last year we were a normal family, this time last year we didn't have a child with a brain tumour. Just like most families our kids were healthy.

This time last year We had no idea that the following day would turn our lives upside down, Tear our family apart, break our hearts beyond belief and change who we are as people forever.



- Posted using BlogPress from my iPhone

Monday, 4 March 2013

Weekend and amazing friends

Sunday early morning

Regretted having that second glass of wine when I woke up for my middle of the night wAke. Awful headache and feeling awfully sorry for myself. Couple of Panadol and plenty of water and I was feeling a little bit better. Hate these middle of the night wakes and would love to stop them. I laid awake for hours next to my little man, thinking. Worrying about his future. I have to try to stop myself thinking about it because its so overwhelmingly sad that when I go there its hard to come back. I then find myself sobbing next to him while he sleeps instead of enjoying how good it is to have him next to me sleeping.

Sunday day

We had a visitor today. A very special one. Throughout this journey we have been blessed with beautiful people in our lives who have helped us along the way and supported our family in anyway they can. Often these people we had not met until we began this journey.

Today we met one of those amazing people. A Beautiful man who has followed our journey since the beginning and has been a constant support via emails and messages of encouragement. He has spent time researching treatment options and taken a personal interest in our sons journey. We are so grateful to have finally met him today and his beautiful son.

He was every bit the wonderful person in person that I expected him to be from his emails. A gentle giant, clever, thoughtful, warm, kind and generous.
Very grateful to have this person in our lives and so happy to have finally met him in person.

Jayden of course was in his usual nudie form and didn't wear an ounce of clothing for the whole visit or rest of the day. What a fabulous way to get around really. Too bad us adults can't get away with it.

I read recently in a book the following words ;

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their beauty is revealed only if there is a light within".

These words resonate so clearly in our lives. we have been helped and supported by people with a light within. true angels. We are blessed with people like the wonderful man that visited us today and many others who have stood by us and helped in anyway they can.

one person who also stands out in my mind as i read this passage (as many people who have helped us do), is a woman who was not a close friend of mine before this nightmare began. I knew her only as a mum from school and spoke to her on occasion. She became my friend by making it her business to help us out in anyway she could and her loyalty as my friend has not faulted since. I like to refer to her as my " amazing friend".

My amazing friend first connected with me through my blog and went by the name of 'research nut'. With that name I had assumed they were a man, a fella spending a lot of time in front of a computer. We messaged back and forth about other treatments for Jayden and she made it her mission to seek out a proton beam centre that would treat Jayden as there isn't one in Australia.

We were doing our own research as well and sending copies of his MRIs and notes all over the place but we didn't have the time to put the hours in that my amazing friend did. She spent hours in the middle of the night talking to and emailing doctors and specialist overseas to find a centre that would take Jayden. She also was able to make contact with another mum who went to the states with her daughter for similar treatment and found out about the MTOP application. This other mum was to also join her in the title of " amazing friends". Together they organised a bucket load of things that we were unable to do from a hospital room. In this time I could name several other beautiful people who also helped and became " amazing people" in our lives along the way to get to Chicago and of course the Perth public-all amazing people.

Eventually this amazing friend made herself known and came to visit Jayden and i in hospital. I will never forget how surprised i was when she arrived and i saw before me a mum from school, Nadja. I know I cried and I know I had never felt so in debt to someone as I had to her as she truly moved mountains to find the treatment centre, Procure.

She did not stop there either. She kept in constant contact with us while we were in chicago, continued to research centres for treatment for Jayden should we need them And a day never goes by where I don't get an email from her or text to see if I'm ok. If I'm not, she's onto how to help.

I don't know that there are many people like her, truly she's very special. She has small children of her own, so she's busy as well with her family but still makes the time for us. She understands that sometimes I'm not up for talking and waits for when I am. I know she feels helpless sometimes when she can't help but it doesn't stop her trying.

There should be some kind of medal for this type of friendship. She certainly deserves more than just my friendship.

I know I've talked about how lonely I am often. I am. Lonely in my pain. But Nadja and other special people are there around me ready to listen. Sometimes I can talk to them but sometimes its easier not to.

I just wanted to make mention of this wonderful friend in my blog today as When I began it by talking about the man that visited today I kept thinking about Nadja. The two of them have also become friends as they have emailed back and forth throughout this journey concerning treatment options and what's available out there for Jayden. Together they have found information, research we just didn't have the time to do. So just really wanted to talk about her as well.

Anyway back to Jayden.

He never had a nap on Sunday and by the afternoon he was quite unsteady on his feet. I hoped the lack of a snooze was the reason for it but of course i was panicking inside. Unfortunately he also had a late night and was extremely difficult to get to bed. in fact he had one of his major big tantrums. They don't happen too often but when they do its not nice to witness at all. In fact its quite unsettling to witness as its completely over the top hysteria that can last for sometime.

During these episodes he's angry, upset, and crying all at the same time. he cant say exactly what he's upset about only that its everything. by the time i managed to calm him down he fell asleep while sobbing. awful. i felt so bad.

Every time i see him do this I cant help but think when its happening that its not normal. I've not seen that kind of tantrum in either of my other kids and a big part of me wonders if it has anything to do with all the treatment he's had in the past year.

Monday

Today i woke to my little man at the very edge of the bed. Im so use to him being squished next to me that when i woke and he wasn't there i panicked. looking again i saw him at the end of the bed and i gently picked him up to be closer to me and of course that woke him. but unlike myself he was grinning from ear to ear even though he was woken. I just love this little man so much.

My friend Nadja came to visit today with her children and we went for a walk to the park with the kids. its so nice to be in Her company. I know she really cares and that's very special. She may not understand what I'm going through but I'm learning that sometimes just having an ear that really listens is so important.

After she left Jayden and I went for a walk with me pushing him in his pram. He was tired as normally he wouldn't sit in it for any length of time but today he didn't want to get out.
He's had a big couple of days and as I'm writing this he's sleeping soundly.

Everyday I have with him I'm so grateful. Somedays are certainly much harder than others. I still can't find a place in my mind where I can truly relax, I don't think there is that place. I still can't find that place where I can truly enjoy myself unless I'm with my little man and other children and even then I'm always worrying. I'm constantly worrying about him. every smile i get, every laugh i get from him I cant help but have that awful feeling of sadness in the back of my mind that i may lose that one day.

I try so hard to lead a normal life but there truly is nothing normal about this heartache, this life. I wish i could laugh again like i use to without fear, without worry. i wish i could enjoy my days with my kids without that constant worry of the future in the back of my mind. be able to talk without wanting to cry.

I know this is my new normal now but I so wish it wasn't. I wish I could hear the words "your son is cured" but I know no one can say that.

There is truly nothing easy about this journey, no day is easy, no day goes by without pain.

I am grateful for everyday I get though and i never forget that And i hope with all my heart that I get a lifetime with all my children.



- Posted using BlogPress from my iPhone

Saturday, 2 March 2013

Smiley man

I woke up to my smiley little man this morning. Grin from ear to ear and ready for action. Couldn't think of anything I would rather see than his smile in the morning.



Even after having yet another bad night sleep, his smile always manages to cheer me up.

Lately I have been waking between 1am and 2 am and not able to get myself back to sleep. Not fun. Of course I spend that time thinking , worrying and stressing. I wish I could make my mind stop sometimes. Not as much as I wish they had a cure for childhood cancer however.

We took the kids out to the park this morning and returned for lunch and then out again for the afternoon. Jayden was in fabulous form, I honestly think that he spent an easy 80% of today laughing. he was just so happy. Even Layla's friend who spent the day with us commented on how much he laughs.
He was No doubt so happy because the kids were home but also because he just loves life. And You just cant help but smile and laugh with him, its really beautiful.







After we came back from the park in the afternoon we decided to go out for dinner. We didn't go to our local little Italian restaurant that we always go to this time and decided to try something new. I don't think it would have mattered where we were though as it was just great to be together. I know I will never take that for granted. Sitting together, eating together, laughing together as a family are true gifts in my life and I am so grateful for them.

We even had an ice cream at the ice team shop nearby after dinner which the kids were over the moon about. And I even treated myself to two glasses of wine at dinner rather than the one I normally have. And gosh I'm glad I did that.

I'm now laying next to my beautiful little man as he sleeps. Once I finish this entry I'm going to join my other two kids in the lounge room to watch a DVD . Saturday night, movie night.

We had a beautiful day today, together as a family, and I hope for so many more.