Wednesday, 30 April 2014

Sometimes.....

Before I dribble on about my "moment " this morning, I should write that Jayden's MRI is all good. He had his appointment with Dr Nick yesterday and it's all good. Jayden was, as always not the least bit happy about being there but we took his brother Luke for moral support which helped a little. However Luke didn't want to be there either so it didn't work as well as We had hoped. Jayden did however do all the things the nurses wanted him to do like weight, height and blood pressure because his brother did it too. but when it came to sitting in Dr Nicks office he wasn't going to do anything for him. I don't blame him though and totally understand as we don't want to be there either. We have all Definitely had a gut full of it all, a long time ago.

I'm so damn grateful that everything is ok. We all are and we hope and pray it continues to be ok. More than anything in this world we want that. We so very much want that. No words are enough to say how desperate I am for that.

So back to today. I Drove Layla to school this morning and on my way back as always, when left with my thoughts, I think of Jayden and the journey our family is on. Not a day or second goes by, that I don't wish it were different, but whether I like it or not, it's our journey.

As I drove, I watched all the other cars and thought of the people inside them. They all have their own journeys too. Some of them easy and some of them hard and no doubt some not too different from mine. I know I have to accept mine, and I do, I don't have a choice. I have to get up every morning, get on with it and appreciate every moment I get. But sometimes.....

Sometimes I just want out. I want to not have to appreciate every moment but rather, take them for granted. And sometimes I just want time out from my head and it's thoughts. out of the thinking of the future and the worry.... Out of this journey... Oh, who am I kidding? Not sometimes..... all the time! I wish for a time to know, my son is cured. A time that I can shut my mind off and breathe.

Sometimes I just wish for a time That the constant feeling of tightness in my chest is gone. That i don't find myself exhausted from holding the thoughts that go with that in, and the keeping it together. To not have to burry all the emotions just to get through another day and instead disappear into a state of mind that makes it possible to truly relax. To be able to give moments their true happiness instead of allowing the blackness to spoil them.

I know it's so easy to say don't worry, just enjoy the moments. And I know that's the only choice there is. Because I also know, how lucky I am to have them. But sometimes I wish I could, take them for granted. Not stress about missing a second of everyday or end my day worrying if I have given my son the best day he could have. And Worrying about how many more will He get. Organising his birthday party with the worry of will He get another? Asking myself....Should I have sat down longer with him when he asked me to play cars? Will I live to regret that? Should I have taken him somewhere for another new experience? Wishing I hadn't growled at him when he was misbehaving. Will I regret all that? I just wish sometimes that I could make my head stop so that I could truly enjoy, every second. And have the knowledge, that I have so many more.

I can truly understand how some people turn to drugs and alcohol. I'm certainly not saying that's a good thing, but sometimes the idea of riding myself off so that I'm in a state of oblivion, seems extremely appealing. Although I know it would be short lived. And keeping myself in that state is simply not an option. That may all sound shocking to some but for the sake of shutting everything in my head down it doesn't to me.

That's not to say that's where I'm heading but sometimes i really feel that's where i want to be. Just to shut everything down for a while.

What I really want and the only thing that would help, is the knowledge that my son was cured forever. And, the knowledge that all other children living with cancer were cured.

The thought of anybody's child suffering with this dreadful disease is awful. Especially when I know those children and their families. Even when I don't, I feel like I do, because I understand their pain.
But I wish I didn't. I wish they didn't.

My little man went to Kindy the other day. My daughter came too and they both had a lovely time. But as always, as I sit and watch them play, my mind is churning the thoughts through it. It never stops and when I'm on my own it's the worst.

I'm due to go out this Saturday night with other cancer mums and I anticipate I may have more than one glass of wine. If only it were that easy.....


Love my kids, hope for a lifetime with them all and a lifetime for them all.....






Just love this picture... Favourite photo ever.
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Sunday, 27 April 2014

Sunday morning. I woke to my two boys whispering, and then trotting off to the kitchen happily. I got to sleep in. Beautiful. Love my little munchkins.

They are such good mates my boys but also good enemies. Luke never cuts Jayden any slack which keeps their relationship normal but I also know he loves him dearly. Jayden adores Luke and aspires to be him always. It often makes me so sad watching them knowing the possible hurt ahead. I try to shut those thoughts away and stay in the moment and be grateful for this moment but believe me it's not always that easy.

I have been feeling really emotional these last few days and struggling to get through the days without tears.
The other night Jayden was pretending to read a newspaper and read out allowed "to jenny, I wish you didn't have to die. I love you in the best world. Love Jayden". He didn't know I was listening. I felt so sad for him. He misses our neighbour so much. I gave him a big hug and he went on to read the next page "I miss you Jayden and I love you in the best world. Love jenny". He knew she loved him so much and that is beautiful. Since she passed I had not shed a tear but tonight I did. To hear my little man missing her so much and knowing he has lost a person that loved him so very much in his life is really sad. We all miss her so much but especially Jayden. I know he doesn't understand why and he has struggled with not being able to see her anymore. Very sad.

He is currently calling out for me so I'm off but back soon.

...............

It's late. I'm about to attempt sleep. Jayden is still unwell with a cold/flu but he soldiers on. You would never know it most of the day as he copes so well. But at night it's awful. He is so stuffed up with mucus and wakes coughing, a lot during the night. I really hate it when he's unwell and it makes me worry even more than normal. Which may explain why I'm feeling so emotional and anxious a lot lately.

Today I found myself really overwhelmed with anxiety. Like I just needed to breathe. Be able to take time out, just stop for even just a moment. There's no doubt I feel like I'm going crazy sometimes.

It's much later now and everyone's asleep. All looking so peaceful in their beds. I've got get some sleep myself. Snuggle up to my little man. Love him so much. Love all my kids.

Making faces....







Wednesday, 23 April 2014

It's 2:45 in the morning and I can't sleep. Jayden has been tossing and turning as he's not well at the moment. I went out today to do some shopping and when I got home he had fallen asleep on Danny's lap. So unusual for him and as always has got me panicked. Trying not to think about everything but it's truly impossible not to worry like crazy.

It's been a while since I've written in here regularly and I think a part of me is trying to stay away and block things out. Figuring maybe if I stop writing it might all go away. Logic of course knows otherwise but living in a state of denial sometimes makes life more manageable. I know however that I'm constantly sitting on the edge. That the slightest thing could tip me over. Today while I was out I ran into a lovely lady and we had a chat. We discussed family, holidays etc all the normal things mums talk about. I'm not sure what exactly triggered my emotions, the normality of the conversation which I always find hard or just that another emotional wave is on it's way through. But when I walked away I wanted to cry. Why isn't my life normal like this other ladies? Why can't I really just be thinking about the holidays and what to have for dinner? Why? Why? Why? . I had to go into the shopping centre next but what I really wanted to do was hide in a corner and ball my eyes out. I walked through the shops trying to focus on what I needed while desperately fighting back the thoughts and the emotions that go with the reality of our life.

I hope and pray Jayden will be that 10% and I know of so many other mums hoping and praying for the same thing. And I try to live each day in the moment. I can no longer plan for the future and having those conversations with people is really hard.

I'm so excited about being able to plan his 4th birthday but so hurt as well that I can only live day by day. I want to be able to think about his future but I can only plan from one MRI to the next. I watched him at the dinner table tonight as he entertained us with his beautiful personality as he does every night. His smile, his laugh. His beautiful big brown eyes. And I wished I could be seeing him through the eyes of a mother that wasn't fearful of his future. The mum I use to be before diagnosis. Now I look at him and feel the tears well up inside me worrying, that he may not get to grow to be the beautiful man he was born to be. It breaks my heart. I'm so scared.

As I write in here tonight the tears fall down my face and I'm glad of it. I haven't had a good cry in a while and I know I needed it. I'm not sure if fighting it all the time is best but then crying all the time isn't either. I never wanted this for my sons life and not having any control of it is so damn hard to live with. All of it. Just trying to manage sometimes is damn hard. Pulling myself together everyday to live a life that no longer is the one I chose is hard. I feel so sad for my son. I love him so much. I tell him every moment i get. Hug him, kiss him, to the point that he's telling me "no more kisses mum". I just want him to stay. To be with us for a lifetime. I so hope and pray for that.

I need to sleep.



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Saturday, 19 April 2014

Broome, Easter and pics

I haven't written in here for a while and to be honest, it's been nice to take myself away from the Internet for a while.
Also we went away as a family for a holiday in Broome and I just wanted to focus solely on the kids and nothing else.

Thanks to a wonderful organisation known as Kyle Andrews Foundation we were able to stay in a lovely home near Cable beach in Broome.
The Kyle Andrews foundation was set up in memory of a beautiful boy who lost his battle to cancer 14 years ago. I met his mum while we were there and she is truly a wonderful, kind and amazing woman.

So thanks to her and the foundation we had a wonderful five days in Broome. Was really nice just to do nothing but spend time with the kids. Thoroughly enjoyed it. Lots of walks on the beach, collecting shells, swimming, and family games. Think we played over a hundred games of UNO. Lots of fun.

We arrived back yesterday and it's been non stop washing for me since. I am very much missing just sitting. We all are. Nice to be home though and nice to be back in my own bed.

Easter tomorrow and the kids are so excited. So am I. Looking forward to them waking up to their Easter eggs and going on an Easter hunt. Love seeing them smile.

Here's some pics of our time away.........

 On way in the plane
  Kids got a chance to sit in the cockpit


 Fun in the pool
 and bubble bath afterwards
 sunset at cable beach


 fun at the park







 The three of them at cable beach

Back at home. love my kids.

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Sunday, 13 April 2014

My little man is truly the most wonderfullest company. My dear old neighbour use to say that to me when ever Jayden visited her "he is such beautiful company" she would say. And he is.

I had the best day with him the other day and I was feeling lousy. Awful head cold, flu, just yuck. But he really lifted my spirits. When we woke in the morning he was as always so eager to get up. I told him I didn't feel well and I didn't like not feeling well. He said "I don't like it when you are not well either mummy". And gave me the biggest cuddle.

That day we hung out doing stuff and things and I did very little housework. We walked to the park and he wanted to race me there and I told him mummy's feeling too old to do that today. He stopped running ahead and held out his hand to hold mine. "That's ok mummy" he said as he held my hand "I will walk with you".
Oh my goodness I just wanted to eat him all up there and then. Just love my little munchkin to bits. He's truly such a beautiful little man.

He's now sound asleep as are my other two and so should I be.
We have had a big week.

Love my kids.


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Thursday, 10 April 2014

MRI results

I am so tired from lack of sleep last night but I know tonight I will sleep well. Jayden's MRI results are looking good. Obviously we have to wait to see Dr Nick on the 30 th of April to see the final report but so far all looks good.
I'm so relieved.
Need to sleep now....


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Wednesday, 9 April 2014

MRI tomorrow

Jayden's MRI is tomorrow and I can't even begin to put words to how that feels. Nothing in the English vocabulary can truly and accurately describe the sick feeling in my stomach and the cloud of fear in which I'm existing.

He asked me yesterday when are we seeing his Nanna as I mentioned it to danny over dinner. I told him we would be meeting her at hospital as he has to have his MRI. He said to me " mummy I really don't like going there". "I know" I replied "neither do i but we have to go". "Why mummy?". This is the first time he's asked this with such clarity and need for answers. I didn't want to go Into detail and so just said "to make sure you are better". Fortunately that was enough, and he went off and played. I'm so glad he did as the tears were welling and I didn't want him to see me sad or scared out of my mind.

It's now evening and I feel like I've spent the entire day, week even, pushing back the thoughts of tomorrow. As it looms closer it becomes more difficult and today was almost impossible. Feeling as if I'm walking a tight rope of emotion where the slightest thing can set me off into an emotional mess. My mind has been like mush and trying to concentrate on anything has been almost impossible. My kids came home from school to tell me about their days and I can't hear them. Unable to take my mind away from my concern about tomorrow.

The sickening feeling of the reality of our life hits hard as MRIs approach. Just as the first day we found out about Jayden's tumour changed our life forever we know too, these scans are also capable of that, only far, far worse.

I watched my boys play together tonight and all I could feel was fear. Fear of losing these moments forever. I'm so scared. Exhausted with worry.

Praying and hoping with all my might that everything is ok. That everything is going to be ok. That Jayden's MRI is CLEAR and Praying and hoping he survives a lifetime.



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Sunday, 6 April 2014

MRI approaching

I can't sleep. My mind is racing. The anxiety is driving me crazy.
Jayden's MRI is on Thursday and as always I'm so worried, scared and overwhelmingly anxious.

The past plays over and over in my mind. Procedures. Treatments. The Cries. The Fears. The end of friendships. The feelings of loneliness within a world that no longer is the world I once knew.
Everything that's happened since this nightmare began. In no order. I just lay awake as it all rushes through my mind. The huge sense of loss of the life I once knew and the massive feeling of fear that I may lose my son. There's no way of explaining that feeling.

I just want to sleep. Shut my mind down and sleep.

This never ever gets easy. None of it. Ever.

I Love my little man so much. Words just aren't enough for that.

I need a big cry. Not just any old cry but a howl. I want To release this built up emotion inside me that feels like a heavy weight in my heart. But there's no tears. Because the weight just sits. Exhausted.

I really need to sleep.


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Friday, 4 April 2014

Jayden's had croup these last couple of nights which is no fun at all. fortunately after giving him some steroids it's not as bad. He's had a runny nose during the day and a yucky cough but is in good spirits. Little champion.

He had his little friend over for a play today and he just loves to see her. They got up to all sorts of mischief together it was really lovely. Love it when he has fun with a friend.

The rest of the day was pretty busy with stuff and things but I never seem to get much housework done. It's hard to make myself do any when Jayden wants me to play with him or just sit and watch something on tv with him. I now know what's important and when it comes to choosing, he always wins. Of course there are plenty of times when I don't have a choice, like cooking dinner and ironing school uniforms but he's pretty good when he knows it's got to be done. Love my little man.

I'm laying next to him and he's sleeping soundly. He still Has that wheezy sound coming from his breathing but it's not too bad tonight.

His sister helped get him ready for bed tonight and when it comes to a play mate for him she's always his first choice. He loves her so much.
They did loads of craft work together after dinner as Layla is the queen of craft. Then she dragged him around in my laundry basket and got him ready for a bath where she entertained him with bubbles.











Lots of laughs came from the bathroom tonight. Love that sound.
Love my kids.

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Wednesday, 2 April 2014

Had a beautiful day with my little man today. No rushing to get anywhere just an easy hang out day at home. Had plenty of chores to do and only got a few done. The ones that Jayden could help with we did together. He loves lending a hand. I love his company so much.

Danny joined him outside when he was digging out the front and putting sand on the verandah and he said to him "Jayden, what are you doing to my verandah?"
Jayden replied, "it's not your verandah dad, it's all of us verandah. If you lived here by yourself, then it would be your verandah. "
So cute and so obvious..
Love my little man.

I Took some beautiful videos as well. Love it when I get some great pictures and videos.
Love my little man



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