Tuesday, 30 July 2013

Yesterday

I never wrote In Here last night but i needed to. i had so many emotions i needed to get out but i also needed to sleep. Sleep won and I'm so grateful for that. I also had to think about whether or not I wanted to write about yesterday events, last night to be exact.

I would never proclaim myself to be a perfect parent, far from it. And by not writing down yesterdays events would be excluding my imperfections as a parent. Last night I lost my temper and to be honest i wouldn't even give it the label of imperfection but rather inexcusable behaviour that as an adult i should have prevented.

Jayden had one of his tantrums and my response had the most vital piece of necessary requirement as a parent missing- "patience". Lack of sleep, too much caffeine and absolutely zero patience at the end of the day. No excuses though and instead of recognising I wasn't coping, I lost my temper. I scared both my boys who were crying because i behaved like a two year old myself.

By the time I cooled down I felt like absolute crap. If only the world would just come to an end
right then and there, I thought.

What I did do afterwards, was cuddled them both and apologised. Told them my behaviour was bad and I had been a bad mum behaving that way. That it wasn't their fault, it was mine. I was tired and cranky and I should never have taken it out on them and told them how very much I loved them.

I can't however take away that moment. The moment I lost my temper, yelling like a twat and just losing my cool. I can't take that away.
Instead I sit with the overwhelming guilt that not only did I behave badly but I wasted and ruined a precious moment with my sons. In particular Jayden. That I don't know how many moments I will get and I just wasted one. I beat myself up about it all night and cried my eyes out about it.

I woke this morning and thought of my dad. Not long ago he told me that what he regrets most as a parent was his discipline methods he believed now were harsh. We were scared of him as kids but only when we were naughty. I sat there remembering some of those occasions but also knowing they were such a small part of his parenting. For the rest of it I always knew he loved me, was always there for me and still is. That's what I remember about his parenting. That he loved us, that he was there and always is. That I couldn't have wished for a more loving and wonderful father.and I love him for that.

So I hope that as I live with this regret of last night, of losing that precious moment to anger, that my kids will remember me for how much I love them. That however long Jayden's life is he knows that I love him and every second of everyday I am trying my best to make his life perfect.
The guilt I carried before Jayden was diagnosed is no say near as intense as the guilt I carry now. Every time I waste a moment or have an awful moment like that, it's just huge and I mean REALLY huge. Emotions are running high almost always and managing them can be a huge challenge.

And I know I need to forgive myself and do everything in my power to make sure I don't allow myself to get so lost again. I can start that by making sure I get an earlier night sleep.




Fortunately, today was a much better day. My kids even joked about "mums spit" last night. Glad they can laugh about it. They also thought it was funny that dad received a piece of me too and in true beautiful danny form he took it on the chin. Do love that man.

My family are so precious to me and today I had a wonderful day spending time with each and everyone of them.
Thank heavens for that. I definitely woke this morning with a mission to have a better day than yesterday and I did. Yah for that.

Luke had a doctors appointment so he and I got to hang out for a while which was precious. When Luke went back to school Jayden and i played with his toys and i just enjoyed it so much. When Layla came home i got to spend some time with her as well.

So happy to have had a good day.
Love my kids.




Today

Today I found myself thinking about yesterday. This time about Layla. Recently one of her 15 Guinea pigs had a growth on its back and it had to be removed. The vet told me he thought it to be cancerous but hoped it to be benign for if it wasn't and the lump grew back the guinea pig would have to be put to sleep. I never told this to Layla.

I spoke to the vet yesterday about when was a good time to put the Guinea pig (cupcake) back in with her sisters as for the last 10 days she's been recovering from the surgery in a nice warm cage in Layla's room. I don't think she's in a hurry to go back outside with her sisters but Layla's room really isn't the right place for her either.

The vet asked me if the lump had returned and to me it looked like it hadn't but I couldn't be certain. We decided she should go back soon with her sisters and i then got off the phone.

Layla was standing near by with a worried look on her face and asked "what if the lump comes back mum?", tears were welling in her eyes. I said "let's not worry about the what ifs, as at the moment it's not there, and that's a great thing. It may never comeback so we need not worry about that now. Lets leave that worry for then not now. And if it does come back we will sort it out. It's going to be ok".
I gave her a big hug and reassured her everything was going to be ok and found myself in one of those 'light bulb' moments. I realised I had given her advice that so many people have given me, good advice. When you are actually living it though and you love someone so much or in Layla's case her guinea pig it's very hard not too worry.
It's so true though. In that all the worrying in the world won't change the outcome. That we should enjoy what we have today and not worry about tomorrow.

Putting it into practice is a whole different ball game however but, knowing it is important. Knowing everything is ok today and to focus on today is important.
I hope Layla's Guinea pigs growth does not grow back. For she loves that animal like all her animals.

And today like everyday I'm going to try and put my advice into practice. Jayden is happy and well. Playing with his cars as I write and still in his pjs.

Love my kids so much and so happy for having today with them.

Sunday, 28 July 2013

Its been a few days since I've written in this blog. I haven't had the right moments to write. there's been things I've wanted to write down but then someone's needed me or I'm too tired and gone to bed. Which is a good thing because it means I've had a couple of decent nights sleep and its of course, always nice to be needed. My dad always says that, "when you get old leisl, it's really nice to be needed".

Last night I sat up and watched a movie with Layla and Luke which was lovely and the night before that I watched one with just Layla. Right now I'm laying in bed listening to my boys snoring. All three of them. Danny being the loudest, closely followed by Luke and Jayden having the sweetest sounding snore possible. Love that sound.

Luke really wanted to sleep in the bed with us tonight but there just isn't enough room and he has his bed right along side us. So we squeezed our bed so close to his that there was no longer a gap between us and he was much happier. He liked that he didn't have to worry about falling out now. Which I did t think even crossed his mind, but, there you go, it did. Once we did that he fell asleep quicker than any of them.

We had a day spent together which is always nice.I do love the weekends, school holidays and anytime that we are all together.


Yesterday we had gone and bought some balloons that the kids picked out to let go this morning in memory of a beautiful boy named Eric James Baron. It would have been his 2nd birthday today. The kids were very excited about letting them go so as soon as we had breakfast we all went outside. we talked about little Eric and why we were letting the balloons go. They each had a two balloons. The kids released the balloons together and we watched as they floated to the sky. Happy 2nd birthday Eric, you dear little man.
Luke watched in silence then said "do you think he will see them mummy". "I hope so" I replied. "Me too" he said.






We watched until we couldn't see them anymore. i stood there, thinking of little Eric and how much I wish he was celebrating his 2nd birthday with his family. How i wish his mum was holding him and all of this crappy world of childhood cancer didn't exist. There is Nothing about childhood cancer thats fair. It's not fair that children get it, it's not fair they have to suffer terrible forms of treatment and its so not fair that many do not survive. I hate it with every inch of my body and I cannot get away from the sadness of it because it is truly devastating.

Little Eric was a beautiful little boy who has a beautiful family that loved him dearly and I do not understand why he had to pass. I don't understand why and how this can happen. That my little boy also has the same disease and its scares me beyond words that one day we could be letting go balloons for him. I try really hard not to go there in my mind. Not to think about losing my son but when it's happening all around me, it's so very hard not too.

I try to focus on today and just remind myself how lucky I am that he is here with me now and enjoy that moment, be grateful for this time. But It's so hard to do that though when all your dreams of your sons future are now an unknown, his future an unknown. Will he have one.. Unknown.

All I have is hope. Hope that he will have one. One with his brother and sister. One where he gets to drive the big dump truck he told me he would drive when he got to be big. The sleepover he can have at his aunties that he said he will have when he's bigger. The light switches he cant reach now, he gets to reach. A bike to ride, a scooter, skateboard and maybe surfboard.
All the things I once took for granted my son would one day do or try, I now hope and pray for with every inch of my being.












Thursday, 25 July 2013

First swimming lesson


I Took Jayden to his first swimming lesson today. I had hoped he would enjoy it. Enjoy doing something normal. That we both would enjoy this time.
But it didn't work out that way. He hated it, I tried to jolly him along but he just didn't want to do it and I have absolutely no powers within me to push him. I never could before and I'm worse now. I felt so stressed trying and knowing he didn't want to be there was just awful. when he asked to go home i didn't argue and got him dressed back into his warm clothes. I felt like crying. Just seeing him the slightest bit upset like that pushes every emotional button within me.

I should have known though. He has been scared of water ever since he stopped treatment. We believe its because for so long he wasn't allowed to get his lines wet so no deep baths or swims and we were always paranoid about him getting wet and wetting those lines. i imagine that rubbed off on him a bit and he developed a phobia about it himself. He will get in the water with a lot of encouragement if both his brother and sister are in but will get out just as quickly. Although he did enjoy the pool we went to down south where he could stand and touch the bottom. maybe thats the key. taking him where he has more control of the situation. god knows he's had so little control of the rest of his life, maybe thats just all he needs.

He does love his baths though too so that's got to be a step in the right direction as well. I think we are just better off taking him to the pools with the kids every now and then instead where he can touch. May even do that this weekend.

Anyway it's late now and I just wanted to document his first day of swimming lessons even though it didn't go as planned, he still had a 'first day'. That's something. We tried.

Tired, need to sleep. Hope it comes easily.

One more thing. We did our "what are we grateful for today" around the dinner table tonight and Jayden always says now "you mummy" and gets a fabulous response from me of course for that one, then the kids asked me what I'm grateful for and I started to say " I'm grateful for ..." And Jayden pipes up and says "Jayden! your grateful for Jayden mummy". "Yes Jayden. I'm grateful for you, of course. " Little munchkin. "And all of my kids". I'm so very grateful to have them in my life. Very, very grateful.


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Wednesday, 24 July 2013

Appointments


It's Wednesday lunchtime and in half an hour I'm in for my counselling session. I always turn up at these sessions thinking that I don't have anything to say but within five minutes of being there I find myself pouring out a bunch of thoughts and feelings that I didn't realise were in such an abundance inside of me. Of course I know I'm stressed and worried but you never really realise how much is kept inside until you have been given permission to let it all out.

Sometimes I get nervous before coming as I don't know what is going to come out until I get there. Especially if I've had a bad week. Letting it out is so overwhelming sometimes and scary but I know it is also healthy. Just there's so much in there sometimes that I'm almost frightened to let it out. Frightened of my own feelings. .

Jayden had a shocking night sleep last night and hence so did I. He was then Up super early, asking for a cup of tea. Always greets me with his infectious smile and I never mind getting up with him. I'm just happy that I am.
That he is with me, that we are home. Always so grateful for that.

I'm sitting in my car in the car park waiting for time to go by for my appointment it's cloudy and has been raining. Jayden and I went to Playgroup this morning and as always he had a blast. Lovely to see him amongst other kids and doing the things he should be doing at his age like playing.



We also have our appointment with Dr Nick this afternoon to go over the MRI results. A good friend suggested I get a copy which I hadn't thought of before and will do today. Have a few things I want to discuss with him about Jayden so it will be good to finally see him. Emailing just isn't the same.

Ten more minutes to go and I'm getting anxious. I think that emotion has become so normal to be now that not being anxious is starting to stand out for me rather than the feeling of being anxious. If that even makes sense. Rambling now. Off to appointment.

Out now. My session with the psychologist was good, sad, emotional but Worth it. She's a wonderfully honest and genuine person and makes me feel normal in this crazy non-normal world I now live.

The thing that stuck in my mind
Today was she said to me "the greatest gift you can give your son is allowing him to be normal. That he was different for so long and all he wants now is to be treated like everyone else". That makes a lot of sense to me.

What she said would also explain the way he carried on yesterday when we all went to get our flu shots and Jayden didn't need to as he already had his. He was most upset that he was going to miss out and kept saying "I want a needle too". It was amazing really considering what he's been through but he was hell bent on having a shot as well. Fortunately he needed his chicken pox one so he got that. Cried his eyes out but was satisfied he got one too. Hilarious really. We all had a chuckle.

We are now on our way to Jayden's appointment with whole family in tow. Took the kids out of school early as appointment is right on school pick up. We probably could have asked someone to pick them up from school and mind them till we got back but in all honesty I didn't want to. For so long they were passed from one person to the next while we were running back and forth from the hospital and I just don't want to do that anymore to them unless I absolutely have too.

So we are together which I always love and ready to hear what Nick has to say about MRI.

Kids were not happy about being at the hospital, none of us were and in our haste to get out I forgot to get the copy of the MRI.
Nick told us all was fine but would have liked to have that report to read myself so will chase it up tomorrow.

After we left the hospital we went to our favourite Italian restaurant in Fremantle. The kids love the spaghetti and we just love being there. I especially love not having to cook or get up every five minutes.

We are now all in bed. Early night tonight for me. My beautiful little man on my left and my equally beautiful little man to the right.
Hope sleep comes easily.


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Monday, 22 July 2013

Jayden went to gymbaroo today, the first day for the term. His brother and sister came too as school isn't back until tomorrow. Was really nice for him to have them there with him and he was so much more confident knowing they were right by his side.



After the session was over we had a drink at the cafe then off to the library then home.



So nice to spend time with my three rascals. Back to school tomorrow and not looking forward to that. I'm now sitting listening and watching my kids play together and it's definitely without a doubt the best sound in the world.
Seeing them together always has that double feeling, first of happiness, then of sadness. Never goes away.

The other day I had the pleasure of meeting a lovely lady living a nightmare of her own and the feeling of being understood by her was comforting. We were able to talk about stuff that only people who have lived this would understand and to share stories, emotions and fears was truly a relief. So often I have to keep these thoughts and feelings inside and it was so nice to not have to and to relax with someone who understands.

She told me a woman had said to her once "oh, your the one with the sick child". Upon hearing that I immediately felt defensive for her and annoyed at the woman who made such a silly comment, but i also have come to realise and know, that nobody says things to deliberately hurt or upset someone in this situation they just don't know what the right thing is to say. However, what it did highlight to me is that whether we like it or not "we are different" and that she merely pointed that out by her comment: "Your the one", in other words "your the different person, the one not like us". And, she is right. we live a totally different life now that's filled with constant anxiety, living ever second on high alert, fear of the future of our children and grieving everyday for our previous life. We know longer can chat about the simple goings on without hurting inside that life is no longer simple, our lives have taken a huge turn and the word "simple" doesn't describe it at all.

And, When we do chat about stuff to people we always have that underlying pain in our hearts about our lives that simply never goes away. Today for example I was talking to a lady I recently met who had a baby not long before. I asked her how everything was going and she told me her child is now seven weeks old and so said "the hard bit is over". As I listened to her I remember Jayden at seven weeks and probably thinking something similar but for me, that was the easy bit and I had no idea then that the hard big was yet to come. I walked away with that pain in my heart. its always there but certain conversations, experiences, memories make me even more aware of it and the feelings of sadness are immediately bought to the surface. I jumped in my car with the coffees I just bought and sat there for a while with that feeling. Took a deep breath in and drove home.

At gymbaroo I was talking to a lady and she was telling me about her kids and again I feel that pain in my heart. No matter what I do I'm reminded and its truly a challenge to keep it from taking over my every thought.

So when I got to talk to this woman the other day who knows what this feels like it was good. Just to be understood, to not feel like your boring someone with your woes and just to be able to hang out with some who "gets it".

I read recently that "when the unthinkable happens, most of us long for a community of people who understand what we're going through." This is true for me. For when I am with someone who understands I feel my most comfortable, the closest I can feel to 'normal', my new 'normal'.

It's late now and I'm sitting in the kitchen and everyone else is asleep. We had wonderful news last week that Jayden's scan was clear but I'm sitting here now with the same anxiety and worry I had days before. It doesn't go away. Yes, I'm super grateful and happy Jayden's scan is clear, oh my god I'm so relieved words can not truly describe that elation, but its not over. I know that. And it's only if you live this life do you really understand that. My mind is set onto high alert, high anxiety and worry. As much as I wish it were different, it's not. As much as I wish I could switch those emotions off, I can't. I'm a mum and this is my child. Nothing is going to stop me worrying about him, and I have very good reason to.

On the night of the MRI results at dinner when we do our favourite things we had also added "what are we grateful for?". As the question went round the table and the answers came, the obvious one "Jayden's clear MRI" and when it came to Jayden's turn he said "I'm grateful for you mum". I just wanted to burst into tears right then. for i am so grateful for him and his brother and sister.
I just love them all so much.

Saturday, 20 July 2013

Sunday lunch

Today We went to Danny's mums house for lunch and had a wonderful time. the kids love seeing their Nanna, especially Jayden. He loves his Nanna as she does him. Was really lovely to spend most of today there with them and Danny's brothers family too.

I took some photos of all the kids together before we left today and from the moment I asked them to stand together Jayden was up front and ready and smiling like this in every photo. Very funny.



It's late now and everyone is in bed and I'm up. Still find it difficult to sleep but I guess that's something I've begun to accept. Some nights are better than others but most are spent thinking ways too much and not resting enough. Certainly my minds not resting.

Yesterday evening while I was cutting a piece of bread at the kitchen bench i suddenly found myself very anxious. like a wave, the anxiety washed through me. I stood there feeling the energy and thought "does this ever end". Clear scan and still stressing. I know its just part of this journey and am trying very hard to just ride these waves all the while telling myself its normal, so as not to feel like I'm truly going insane.

I've also come to realise its time I truly thought about doing something for myself like yoga or meditation or something. My dear friend has been trying to get me to the gym for sometime and my dad is always telling me to "make sure I'm looking after myself". But I really am the last person that I think about looking after. After all, I'm fine? Of course every time I write in here I remind myself that I'm not exactly 'fine', no one is in this situation but its so easy to forget to do something about it. I think I'm doing stuff by seeing a psychologist but I'm not really doing anything that's good for me, like exercise.

As I write all this down, in the back of my mind I can hear myself talking myself out of it and instead just to keep things as they are. just keep going the way I am. Because just doing what I have been doing is easier right? . But is it?

Jayden's been great today, as have my other two but he went into one of his rages again just before bed time. i truly hate seeing him like this and am at a genuine loss when he is. i try everything but he's so caught up in his emotions that it can be truly exhausting and awful to witness. My miracle worker Layla came to the rescue again and I listened near by to her doing her magic. She has the most gentle voice and the patients of a saint and wasn't giving up on him. And he just loves it when she pays him some attention. I thought any minute she's going to have had enough of trying but she didn't. He was Soon in bed with us and more relaxed ready to read books with us. he wouldn't let me clean his teeth though and only wanted Layla to and only Layla was allowed to put his pj top on. Funny little fella. Clearly off mum. That would be because I told him it was bedtime and he did t want to go to bed. That's how it started. Tantrum first, that quickly escalates to a rage.

I love the way Layla is always there for him, she loves him so much and has so much time for him and I love that he has her in his life. She really does care for him very deeply and when she found out the scan was clear her and I embraced each other in a hug that contained a mutual deep feeling of relief.

Jayden is so loved by his siblings he is so lucky. They are so lucky to have him too, to have each other. Whenever I think about their relationships with each other I feel teary and want to cry. As a mother all you want to do is protect your kids, keep them safe, not let them get hurt. Just the thought of any of them hurting, sad, heartbroken is crushing. The fact that they all are travelling this journey with me is scary. And all i can do is hope and pray that we will continue to be together for a very, very long time. That they never feel the pain I'm so frightened off, that they enjoy being children and they enjoy it together. That they get to grow old together. God I hope that to be true.

Friday, 19 July 2013

Luke's front tooth

I forgot to mention in my last entry that luke also lost his front tooth!
when we came back from the hospital and picked him up from his friends house we were greeted with this toothless grin!




And every time i look at him smile it makes me smile. I'm so glad I can enjoy these precious moments.

Love my kids.


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Best 24 hours ever

Since we found out yesterday that Jayden's scan was good and that there was no change since his last one, we have all been so happy.

I didn't expect to find out so soon and really did t think we would know anything until nick got back next week. But after a few phonecalls and finally being able to leave a message for the doctor to look, we got the phonecall yesterday afternoon.

I don't think I could have possibly been more relieved or happier. I felt the weight lift off my shoulders almost immediately and felt as if I was floating for a while after. Oh my goodness was I happy! This scan really had me worried, although they all do, but after he vomited the other day I was really panicking. Thank heavens my worst fears were unfounded. Yah for the clear scan.

I know it's not the news I really want to hear the most, and that is "he's cured" but I've come to realise every day is a bonus and every clear scan is a blessing. So am truly thankful we have been able to receive this good news.

I couldn't stop cuddling him yesterday and today and I'm sure he's well and truly over me smothering him.
Last night I went to bed snuggled up to him and just was so happy I have my boy with me. I felt like I got a second chance, another turn and I'm so going to make sure I enjoy every second of it,

Our house is one big happy place today and god Im so very grateful for that.






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Wednesday, 17 July 2013

MRI

Yesterday
Tomorrow is MRI DAY. Today is mega stress scanxiety day. Have struggled all day but tried to convince myself I'm fine. I've never......
Today
I couldn't write in here yesterday. I began to but it was just too hard. The first few attempts just made me feel ill and I felt I needed to just try and switch off for a while. Completely impossible of course so much so that I found myself vomiting in the toilet by the end of the day.
Everyone was feeling the stress of it all. Luke wasn't himself, neither Layla and we all just fumbled through the day not mentioning today's scan.
In the afternoon I took the kids to the park and as we walked along the path on the way back, Layla asked "are you worrying about tomorrow mum", "yes, I am", I replied. "Me too". She said. We walked in silence for a few minutes then she said . "But I'm sure everything will be fine mum". God I hope so.
We are now in PMH waiting for Jayden to go in for his MRI. He's had his pre-med and is happily playing with the dollhouse here with dad. I'm so tired. No sleep, an early start and no food. We are all feeling weary. Been here since 7:30 am and it's 10:00am. That's actually not long compared to some waits we have had to endure. We are hoping he will be in soon.
An hour and a half later and we are waiting in the friendship room now to be called to see him in recovery. As always handing him over to the anaesthetist was awful. I particularly didn't like this one. Most have a beautiful manner that makes you feel somewhat safe but this one was just too cowboy ish for my liking. Fortunately the nurses assisting were wonderful which eased my mind somewhat.
When I carried him in he had already fallen asleep in my arms from the pre med, and so I hoped it was going to be easy. But when I sat on the bed with him and the anaesthetist put the mask on his face he woke up instantly and tried desperately to sit up and push the mask away. His head was held tight by the anaesthetist and the mask firmly on his face so his struggles and screams were in vain and eventually his cries slowed to a murmur and Finally he was asleep. i placed him on the bed, as always feeling like absolute shit at what i just witnessed. I kissed his cheek, pulled his shirt down as his belly was showing, gently squeezed his leg and walked away. God this never, ever gets easy.
I wish I had the courage to not be so scared, worried and stressed about this whole process but nothing in my power can stop me being incredibly emotional through this whole ordeal. This life in fact.
As we sit here now waiting to hear if he's ok I'm still shocked that this is our life. That this hospital is so familiar to us now, every corner. That we now know so many nurses here and doctors. That we walk the halls noticing if a new picture has been put on a wall or staff member change. Most people wouldn't even know where this hospital is yet we know so much about every inch of it, in particular ward 3b.
I wish there was a point that there was peace with this whole ordeal. That at some point it didn't hurt so much. That the worry ceased even just a little. That the anxiety eased. That I could breathe in and exhale my pain.
My little man is laying on a table then put through a machine to look at his brain and spine and I am so very nervous. So much so that I don't think I even want to know the results. So much so that if they tell me they can't tell me today then that's fine. Then I can have another night or so to not know anything and maybe that would be a good thing.
Other parents are in the friendship room with us waiting for their children. I don't know any of them or their stories but I'm certain none of them want to be here.
We have just been called, he's in recovery.
On our way home. Tried to get in contact with the doctor that nick had asked to look at scans but were unable to. Nick is away on holidays at the moment and we aren't able to see him until next week.
And so begins the wait for the results.




Jayden playing before his scan today.
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Monday, 15 July 2013

Being strong


I Have put my little man to sleep amongst all his teddies and dad. I always just want to lay there and watch him sleep but as I begin to its not long before Layla and Luke are poking there heads in the door asking when I'm getting up.

So I'm now sitting watching a video with them, well not exactly watching but sitting. I usually wait until they go to bed before I write this but wanted to be hopefully sleeping then too. Probably wont be but I can always hope.

I have felt very numb today, like my mind getting ready for the next onslaught of anxiety. I don't know what to think anymore and am so at a loss. Very very frightened.

We went to a park today and Jayden and the kids had a beautiful time. I love to see Jayden doing things that other kids his age are doing. He always squeals with delight when he sees another playground and just loves trying all the equipment.

There were a lot of other parents there with their kids as its a busy park and for a small part I watched them. I tried to remember what it was like to watch my children and not think about the future but assume they have one. Not worry if they will make it to their next birthday but instead be planning what i will be doing with them. I tried. But it's not there. It's not there anymore and it never will be. I now know life can change in a second, for it did for us and so dramatically. And i can no longer think that way. Instead i have a 3 monthly plan that is purely dictated by a MRI. the next of which is this thursday. I try to convince myself that I'm not any more anxious than usual and its the same stuff i feel everyday. But that's delusional. Inside its eating at me and I let it out in ways that make me stop and realise. I get crankier than normal with everyone and feel like i constantly need a good damn cry. But that cry just wont come in fear that once it does it wont stop. Instead I try to remain strong.

Jayden went to sleep in the car the other day and when I parked in our driveway, turned off the engine I sat behind the steering wheel and quietly wept. No one was with us. Just Jayden sleeping soundly in his chair and me in the front with my tears. The weather was cold, raining gently but everything seemed a blur. As far as I felt it was just Jayden and I and nothing else. I was only there a few minutes when our old Italian neighbour next door , jenny saw me. It's not often I cry in front of her as I know it upsets her but this day she caught be off guard. She walked up to the window, saw Jayden in the back and blessed him then looked at me. In a gentle, kind voice she said to me "You have to be strong leisl. For your other two kids, you have to be strong". I wiped away the tears "I know Jenny" I said "it's just hard". She nodded, rubbed my shoulder and left.

I sat there in my car and I know she is right. I have to be strong, I am being strong but I'm so sick of being strong because strong is so bloody hard. Strong is painful, strong is exhausting and strong is just damn hard.

A big part of me just wants to be weak. Crawl up in the foetal position and ball my eyes out until there are no more tears. Run out into the streets and scream " how shit childhood cancer is". Shake the next person senseless who tells me how hard it is that their kids all have colds, and scream at them to "listen to themselves! ". And some people whom I won't name or hint at i'd just like to scream at for being such self centred twats. and once I'm done screaming go back to that foetal position and remain there.

I don't. I keep it together because that's what I have to do. Remain strong, don't scream yell or behave badly, just be strong. Be strong for my other two kids as Jenny says. Be strong. I'm so sick of bring strong. When I look at my children they give me the strength to carry on and be the strong person I need to be. But when I'm on my own with my thoughts I just want to be weak.

I hope with all my might that one day I have some reprieve from this endless journey of being strong. That Jayden will be an old man and I will be smiling at him knowing he got there. I want to have that day with all my children. that day, where I can breathe again without pain and no longer have to be, strong.



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Saturday, 13 July 2013

My anxiety levels have been at an all time high these last couple of days. I have been watching Jayden even more closely than before, if that's even possible. The slightest change in his behaviour or appearance has been sending my head in a spin.

I'm really worried. He hasn't been sleeping well and waking in the night upset. Yesterday he went for a nap in the afternoon after a very stressful afternoon with him. And didn't go to sleep till quite late last night. all seems normal to some but anything that's not the usual is enough to get me panicked.

I haven't stopped thinking about him vomiting the other day and every time he coughs I feel my hair stand on end and my heart beat faster. I'm so frightened. His MRI is Thursday and a part of me is anxious to find out and the other part just doesn't want to know. I don't feel good about it at all.

This truly is a torturous way to live. Waiting, hoping, wishing, praying. As a mother wrote to me once "waiting for the other boot to drop". Awful. Truly awful.

Last night as my boys played before bed I felt so sad. At night before bed they are always at their happiest and have a little ritual together where they wrestle, run, laugh and generally get up to no good. It's as if they are burning off any excess energy before bed. They are so funny, they think they are too. Such good buddies. It breaks my heart the thought of them ever not having each other. Truly crushing. That I may not hear that laughter one day, see them play, connect, enjoy each other. It truly saddens me beyond description.

As I tucked them both into bed and all of Jayden's teddies. He has taken To bringing as many as possible into our bed as of late and each one has to be covered with the blanket- takes some organisation and skill I have to say. I tucked them in, gave them both a kiss goodnight and told them I loved them. Snuggled into Jayden amongst the teddies careful not to mess the placement up and listened. Listened to them both chatting before they eventually fell asleep. Continued to watch Jayden as he slept and wished with all my night he was going to be ok. that his scan is clear and we get more time. I hope for a lifetime, I hope my boys get to grow old together, for it will truly break all of our hearts if they don't.

I truly don't know how mums get through this. I'm barely hanging in there and I often think of mothers I know and wonder how they manage. I think we all just hang in there as best we can.
That's all we can do.







Buddha

We went to the shops yesterday and Jayden spotted a Buddha figurine. He picked it up and said "this called a boodah mum". "Jenny got one of these mum." Geez that made me smile. When i look at a Buddha now i will think of that. :)

Thursday, 11 July 2013

Jayden vomited today. we were standing outside the movie theatre waiting for Layla and her friend to come out and out of nowhere he threw Up.
My heart sank, and i instantly felt ill in my stomach. Danny and I diligently got organised and cleaned it up as we have done so many times before. Neither of us saying a word, just moving on auto pilot cleaning duty. Jayden was none the wiser and certainly never lets a vomit bother him as he has done so many before. These ones, out of the blue are by far the scariest. the why? the oh shit! The feeling of not being able to breath and life all of a sudden moving in slow motion. I looked up at the wall to see an advertisement for a movie that read "this is the end", and quickly looked away wishing id never saw the damn poster for now i have it in my head that its a sign.

After we cleaned it up we continued to wait and it wasn't long before Layla and her friend emerged. We got in the car and headed home, saying nothing of what happened or what we were thinking. I didn't know what danny was thinking but I was scared out of my mind. I couldn't stop thinking about it and my stomach was in knots.

When we arrived home we had a visitor and went about entertaining. All the while I was thinking of Jayden. Listening to our visitor talking and again going along with the conversation, keeping things up beat until finally they left. My dad was here too and after they left I told my dad what happened today "oh shit", he said. Nothing else. We stood there in my driveway watching Jayden play and didn't say anything else for sometime. I told him how frustrating and sad it is for me to listen to other people's problems when I'm facing such a huge thing here. He said "I know, but to them their problems are huge". I know, he's right but I can't help feel envious, jealous and really really angry. Angry about how bloody unfair this all is, why our child, why anyone's child and why the hell can't I be complaining that my kids were so sick with colds last year? It's crap, but thankfully I have my dad to ground me when I'm feeling like I just want to fly of the handle.

He and I walked over to jennys house (our neighbour) whom Jayden desperately wanted to see. We had a glass of wine with them (homemade italian wine) and chatted. Jenny made Jayden some eggs then fed him one of her famous biscuits. Both dad and i sat watching Jayden and i know what he was thinking. both of us so very concerned. for dad its for me as well. it must break his heart to see all this shit unfold.

Eventually I came home to prepare dinner, dad left and everyone wanted to eat. I found myself getting really stressed out and jumping down Danny's throat and growling at the kids. All for ridiculous crappy things. Everyone knew mum was not herself and tried their best to do the right thing, except Jayden who didn't care and continued to poor his water into his bowl and dumping the salad bit by bit into it as I tried to finish dinner. Rascal.

By the end of dinner and everyone had left the table I broke down. Danny and I talked about it all and for the first time in ages I felt he got me. He doesn't talk about everything a lot of the time so seeing a psychologist became vital to be. But tonight he did. It was refreshing to share my fears with the only other person in this world who loves our son as much as me.




- Posted using BlogPress from my iPhone

Wednesday, 10 July 2013

I went to bed early tonight in the hope i would get a decent night sleep. last night was a shocker and i felt it all day, made for a particularly long day today. Danny stayed up with the kids, Luke and Layla while i went to bed with Jayden. but instead of sleeping i lay awake thinking. I watched ny little man for a while and wanted so much to be sleeping instead of thinking, but its just not happening. honestly my mind is my worst enemy. . difficult.

luke and danny soon came to bed and Luke asked me why I wasn't asleep yet. I told him I'm trying too but I just keep thinking about stuff. "Well that's useless mum," he said. "you should have thought about sleeping."
My wise little man, must get that from his grandad.

So now I'm writing in this blog in the hope that putting my thoughts in here that I will then sleep. I also failed to blog yesterday and we had had a wonderful day. In fact one of the best days I've had in a while and I really wanted to blog it.

We all went bowling first thing in the morning. Haven't been bowling in years and Jayden has never done it. So another notch to his "things he has experienced in his life". He squealed with delight when we got there and was even more excited to see Nanna who joined us as well with two of the kids cousins.

It really was a fantastic morning and I even found myself taking moments out from not thinking about this nightmare, although short they were still moments. What a relief. Clearly that's the sort of stuff I need to do more often. Really lovely. Everyone was happy, lots of smiles and lots if fun. Love spending time together as a family and having fun. Sadly I didn't get any brilliant pictures but this day will defiantly stay in my mind filed in the 'good memories" file.



Dad helping Jayden push the ball down the ramp.



Luke so pleased with his shot!

So yesterday was a good one. Will chalk that up as a truly brilliant day.

Of course they are not always going to be like that and today was another tricky one.

First up was Playgroup and Luke came too as his friends were going to be there. It was fine but hard. When we left I found myself driving home thinking "why do I feel so much more stressed now, than before". I think it's because being in a setting amongst a whole lot of mums with normal lives is "hard". I have to try to be as normal as possible to fit in. Talk about normal stuff, laugh about normal stuff, discuss the issues of normal stuff but inside I'm truly crumbling. Fortunately these ladies are beautiful but I try hard not to burden them with what I'm really thinking and keep the conversations where most people feel most comfortable. So after a morning of that I'm truly exhausted. When I'm with my family and within the four walls of my home I can be myself. i don't have to pretend all is fine, i can just be.

I know I can't stop Jayden from experiencing life because I'm struggling so we will keep going. it's just hard.
i spoke to my psychologist about it today and she reassured me it was normal, always nice to hear my craziness and inability to cope through the most simplest tasks is 'normal'. I do hate this kind of normal though. really it sucks. Even just for a small while id like it not to be so hard. Maybe I need to fit a bowling alley in our backyard.

The other thing that happened at Playgroup was Jayden had an incident. One that I never saw because I was chatting. If there was another moment I would live to regret it was this one. What ever happened it upset him enough for him to run to the door crying and asking to go home. It was awful. I never saw what happened so I didn't get to prevent it. This might seem like nothing to some people but when he's been through so much that I have witnessed but wasn't able to stop and I get a moment where I can prevent something and don't, well that's just crap. In the last year I have Watched him plead with me so many times through tears and screams to stop what was happening to him and I couldn't. But today I could have and I didn't. Damn it hurt. I held him in my arms whilst he cried and found myself so angry
that I hadn't been watching.
Inside I felt myself feel really, really sad for him. I hate not being able to stop him getting upset, hurt, cry, anything that makes him feel bad in anyway. I really struggle with that. And disciplining him has been a huge challenge also. We are lucky that he's such a placid child around other kids and doesn't bother anyone but at home he likes to be a rascal, tipping toy boxes out, not picking up after himself arguing with his brother- the usual three year old stuff. Just I'm not doing too well getting that right. I don't want to growl at him and when I do it feels awful, especially when he cries.

He's asleep now, snoring lightly. Luke's snoring really loudly and am sure he's in competition with danny at the moment. My chances of sleeping are slowly looking worse. Sleeping tablet tonight I think.

I received a message today from a lady and i read it on my phone whilst I was at Playgroup. Wonderful thing the Internet. As I stood there in this normal setting on my own at this moment, I was able to read the words of a most courageous lady and mother who told me her story. A mother who understood. A gut wrenching sad story and one that made me not feel so alone in that moment. I wished she was there with me having a coffee. Standing by me. I know if she were i would give her the biggest hug.

One of the things she stressed was to try and live life without regrets. Words from someone who knows.
There will know doubt be moments like today that I will regret and it will be the silly little things no doubt that I will regret the most but her words I'm cementing in my mind and hope that they stay with me each day.

I already do try to enjoy every moment, even though each moment and thought contains fear and anxiety of the future I still do it. I still laugh, smile and love my kids. I hurt like hell inside often but I still get up in the morning and do my very damn best to get it right.
I know I have too because my kids are the most important thing in the world to me and they need me to do my best.



And I just love this cheeky little man to bits.

Monday, 8 July 2013

A change of heart

Ive never looked back on this blog before. Flicked through the pages. But the other day I did. I missed it. Missed writing down my thoughts, feelings and all about Jayden. I Missed people listening. It's one thing to write your thoughts down and an entirely different one to know they are heard.

I looked at all the photos and it bought so many emotions up inside. A collection of memories altogether in one place. Priceless. Feelings of sadness to not be doing it anymore and a longing to return.

I tried a diary, my Facebook page but it just wasnt the same. So I found myself thinking what is left? My dad urged me to return, as he strongly believed it was the reason I've been able to get through this so far, and deep in my heart I know that too. Sitting with my thoughts and not releasing them in some way is not healthy for me nor in anyway productive.
Many wonderful people wrote to me since I closed it and gave me such beautiful feed back that it made me look at my decision again.
Although it felt like at the time the only decision I could make.

I questioned myself in the last couple of days, who do I write it for? I know first and foremost I write it for myself, secondly for my family and friends who I don't often see or cant because they live so far away. I write it also for other mums living the same nightmare and often feel I am sharing thoughts with them which has become so precious to me and comforting, through these pages i have met many of those mums and i cherish each and everyone of them as my friends now. I write it for childhood cancer awareness. It is very important to me that people have learnt from my experience, that they now hold their children closer and appreciate the things they once took for granted. That's a great thing. That they now also have a better understanding of childhood cancer and the life that exists within this world. That's truly so important too.
And I write it for my children. its a journal of experiences and feelings, and although sometimes very raw and sad something I cant replace with just memories. This is a place, a journal of Jayden and our family's journey and a journal that a friend wrote to me recently and said " a journal I could give to him at his 21st birthday". That made me smile. What a beautiful thought.

I stopped it because I was at a point that I didn't think I could manage the criticism I received. I found myself sitting on the couch on our front verandah and thinking how much easier it would be if I just died. That I would finally get a break from this never ending anxiety and sadness and the super sensitivity that it produces. It was then I realised I had reached an all time low, that I could no longer manage the simplest things as critism and it frightened me. Whether it be the approaching MRI, my inability to keep it together sometimes or just that the simple fact that this is so damn hard some days. Whatever, I just know I had to Stop it, block it out, run away, do whatever i had to do to stop these feelings and that was what I thought I had to do. So I chose to stop writing.

It was only that same morning that I had spoken to dad about Layla's issues at school and my feelings about it and he had said to me " leisl, you are operating on a much higher level of emotional stress than most people will ever get to in their lifetimes, let alone understand it. You have to not let these things get to you, don't go there in your head for it will surely tip you over and you need what strength you have for your Children". Sadly I forgot his words later that day when I had a conversation with a friend who told me what had been said. The criticism. She told me out of concern and although it cut me to the bone I understood why she did. Unfortunately the words that were said were then with me and I was left alone with them in my head. Awful place. So when i began to have thoughts of dying in order to escape the pain i was feeling, i knew i had to do something. It's hard to explain how a few words could make me feel so bad. But it wasn't just those words but the inability to cope with hearing those words. the stress of anything that once upon a time I could deal with i can no longer. My levels of emotional stress are already up there. Like on the tightrope i have mentioned before, just barely balancing. So when im already up there it doesn't take much to topple me over. So i felt my only choice was to stop writing this blog and then those people couldn't get to me, criticism couldn't then touch me and I could be free a little of the emotional stress in which i exist. But that was not to be the case.

A much clearer head a few days later and a realisation that no matter how far I run there will always be people who will judge me, people who don't like me and people who don't understand me. That's life. For everyone. I can't change that and as much as it would be nice to have everyone like us, it's not possible we are all so very different. And whats important in my life isn't that anyway. its my beautiful family whom i love very dearly, So with a big sigh of relief I have chosen to return. To remind myself of what my dad said and to focus on what's important and filter the stuff that's not important out of my mind, so I have the emotional energy for my most precious thing in the world, my children.

I was going to give myself more time away from it to think but with everyday that passes is another day without writing about my son. I don't want to forget one single day of his life and this is a way to be sure that I don't.

He is and so are my other two children my true gifts in this life. My reason to keep going and my strength to face another day. I am so grateful to have them in my life. They are the sunshine to my rain (very corny, but true ) and I will continue to write about their precious steps in life and my journey with them.









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Thursday, 4 July 2013

Last blog

Its with great sadness that I have decided this will be my last blog entry. It use to be a safe place to vent where i found support and encouragement but recently it seems also a place that leaves me open to criticism also. I wish I had the strength to rise above that criticism but I don't. I have no emotional reserves left inside of me to do that.

I think as it is hard for people to understand me it is also hard for me to understand them. I no longer know a world without childhood cancer, this is my life now.
Everyday I know that I may lose my child one day. Everyday I have to live with that thought. Losing my baby. No parent could truly understand that unless they live it and I respect that. But I am not able to truly understand them any longer either.

So for this reason and others I will no longer blog. If I thought I was only read by people who benefit from my entries as well as my self I would continue. But if those entries bring criticism from people and negative emotions to them then this is no longer worthwhile.

For those family members and friends I will keep updating on my Facebook page that you are all a part of. For those that have followed Jaydens journey I am forever grateful. You have all helped me tremendously and I will never forget that support. Please feel free to email me anytime at leislmales@hotmail.com or friend me on facebook at Leisl Males, and Help Jayden Stone page.



- Posted using BlogPress from my iPad

Tuesday, 2 July 2013


I watched my daughter this evening work her magic with Jayden and I'm in awe of her. She has a genuine gift that enables her to calm him when he's in his wildest rages. I call them a rage for they are definitely far worse than any tantrum I've seen and an oncologist once told me they can be referred to as "chemo brain". Awful stuff. Both Danny and I pull out all the stops when he's having one and sometimes it works but most times it doesn't and we just have to ride them through, which can often be quite sometime. they usually begin as a tantrum and if he is tired enough will quickly turn into a rage. When this happens he can't be consoled, cuddled, nothing, Except when Layla does it. I have no idea what makes it different because often she is saying and doing similar things to us, it's just different. She did it tonight when he had one after his bath and I watched her in awe. It's as if when she speaks, everything shuts down for him and he's able to listen. Truly amazing stuff. I watched her and was so proud that she is such a caring and loving sister. She loves her brother so much and has so much time for him and he just adores her.

So when she comes home like she did today in floods of tears I'm truly confused. As a mother its crushing to watch and even more difficult to understand why. You never really know the full story behind girls and their issues at school and its difficult not to be biased when it comes to your own children. Watching her tonight and how generally helpful and caring she is around the house, how intuitive she is with her brothers, the way she cares for all her animals and then knowing she has problems with friends, well it just difficult to understand.
I hate seeing her go through this stuff, always have, but 100 times more so now. I feel I have a 100 times larger sensitivity chip placed in my brain since this nightmare began and that when it comes to my kids it's working overtime. I hate seeing them cry, upset or struggling in anyway. I just don't want them to have anymore heartache whatsoever. They may have so much more to come and I just want to spare them as much of it as humanly possible.

It's difficult. Really difficult. Difficult to function on any normal level when I'm already emotionally stressed. Difficult to deal with your child's problems without getting overly worried about them. Difficult for anyone to understand that emotional stress and difficult to understand why they don't.

I went to my psychologist today and talked about living day today at that level of emotion. That I get times where I feel numb after weeks of feeling emotionally stressed and then back to that state shortly after. like a wave rushing in and out. She told me that's the normal process of grief. The grief we talked about last time, ambiguous grief. Except this never stops. I was relieved again, to have an understanding of my emotional state but wished it was different, some quick fix to make it all stop and be given back my ability to function normally again.

Tonight I'm on my own again and thinking not just of Jayden but all three of my kids. They are so young and so innocent yet have already been exposed to so much. I wish I could wrap them all up and protect them from all the hurt and pain in this world forever, and see them smile everyday, all day, for the rest of their lives. And i hope more than anything in the world they get to all grow old together.



- Posted using BlogPress from my iPhone


- Posted using BlogPress from my iPhone

Monday, 1 July 2013

Sunday night

It's late, everyone's asleep and I'm sitting in my usual spot in the kitchen. I use to write in this blog in bed but am too paranoid about having my phone by the bed theses days so don't anymore.

Jayden had a good day but very exhausted at the end of it. He was really struggling by four o'clock which meant for a difficult but worth it afternoon. He's now asleep tucked up next to dad. Love seeing them like that.

Monday

It's tomorrow now, I ended up telling myself to go to bed instead of writing in this blog and fortunately had no problems going to sleep. Yah for that.

We had a lovely weekend, didn't do much but spent it together and that's the best part.




Jayden's been good but gave me an awful fright this morning when he looked like he was going to vomit. My heart pumped so fast and i felt physically ill, and even after he didn't i still sat there, next to him with my heart racing worrying that he would. I watched him so closely for what seemed like ages, worrying, stressing, hoping and praying nothing would happen and everything was going to be ok.
It just never stops.

I just walked past our room and he's sleeping soundly next to Danny. He looks so peaceful and relaxed. I'm now in the kitchen, everyone's asleep, and so should I. The last week I have felt like I have managed to keep my emotions at bay most of the time. Somehow managing to keep them from taking over my thoughts and getting through the day without falling to pieces. I'm guessing the antidepressants are helping or just my mind regenerating itself. I don't know. Feeling a little teary tonight but that's most nights just work hard to try and keep any negative thoughts away.
I still can't believe to this day that this is our life now. How dramatically it has changed. im reminded every time i go to the school with the kids or over hear a conversation at the shops between mums. Lots of things remind me. Remind me that that's not our life anymore, that simple stuff doesn't matter anymore.

Today I had so much 'stuff' to do but Jayden was being a normal three year old and not allowing that to happen. I loved it. I loved that it was stressing me out and I loved the feeling of feeling normal. Whenever this happens I remember what it was like when I longed for these days. Stuck in hospital not knowing when we would be home or if in fact we ever would be. Longing to have my little ratbag back and driving me crazy. So when these days happen, I'm not angry, or upset but so damn happy I'm having one of them in fact any day with my son with me is a good day. With all my kids, is a good day.

I had planned to go out on Saturday night for the first time in ages with a dear friend. Huge step for me and was looking forward to it. I explained to Jayden early in the afternoon that I would be going out after dinner but for him not too worry as dad would be here and i would be coming back later. it soon became obvious though that i wasn't going anywhere. he stuck to me like glue from that moment on and was not going to leave me to get ready and definitely not to leave the house. Fortunately the friend I was going with was finding it difficult to leave her house also so I was able to cancel. Was glad too. Instead I got to bed early with my little man and his brother and all was good.
I'm tired now and slightly feeling on edge. I heard Jayden stirring and I have a real sense of worry resting on my shoulders.
This morning just knocked me back a mile and I'm still feeling uneasy about it.

It really is a case of just living one day at a time, no more. But some days are just so hard, so damn scary and the fear is just so overwhelming.