Tuesday, 30 December 2014

Christmas Day, and days that follow

Woke up bright an early thanks to the eager children in my house. Luke, Jayden and Layla were all awake before six and couldn't wait to see what Santa had bought them.
Best sight in the world was their smiling faces as they opened each present. This year Jayden was very aware of everything and got really into the spirit. Every present he opened came with the words "it's just what I wanted!"
There was only one brief disappointment in his voice when he realised he didn't get the crane he wanted. However he got so many other great things that he soon forgot about that.
Awesome little man. All the kids were happy, and so were we to all be together enjoying this day.
So very grateful!

We are now on our way to Danny's parents house for Christmas lunch.

Three days later......

It's Sunday night and I've just put my little man to bed. He's sound asleep and watching him sleep is truly a blessing. I just love him so very much.
"Today I'm happy but I'm always cautious with happy" is something a woman on Facebook wrote recently, and I can so relate to that.

Two days later.....

It's Tuesday and I'm feeling so emotional today. Finding myself so worried. Thinking about stuff I spend so much time trying to bury within me. So damn scared. My little man is doing well. But he slept in today, way past his normal time and instead of rejoicing in the fact that I got a sleep in, I'm worried sick.
Never stops.
Feel like I need a good cry but my bodies so use to holding it in that it's making it hard. I think I'm scared to start in fear of not being able to stop.

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Tuesday, 16 December 2014

Its been so long since I last post and so much has happened. Many ups and downs, many special moments and many memories made.

So what has been happening? well I think it would be easier to post the last few weeks in photos.

On the 1st of December we put up our tree! the kids loved doing this and so did I.

 The following weekend we went to stay in mandurah for my dads side of the family annual Christmas get together. the kids love this weekend.

 On this weekend Santa visits and heres a phto of Jayden waiting in anticipation for Santas arrival


 And he finally gets to see him and give him a big hug! Very happy little man.
 Spending time with big brother.

 After the weekend we drove to Bunbury to stay at the Ronald Mc donald retreat. beautiful place. Whilst we were at Bunbury we visited the Bunbury wildlife park which was really lovely. Kids loved it here.
 The Dolphin discovery centre, where Luke got to hold a starfish.



 We did some scooting on the skatepark. Something i find so much joy in, watching Jayden scoot. So grateful for everything
 But he spent more time climbing...
 Plenty of park time had by all.
 We went bowling



 And just had a lovely time together.
Since we've been back its been busy busy busy and we are all looking forward to Christmas day.
I am so very grateful that we are all together and hope and pray for many many more Christmases together. A lifetime of Christmases together.

Monday, 1 December 2014

Jayden's been doing well. We had yet another really lovely day with camp quality at adventure world on Saturday which is just awesome. It was so nice to just be with and enjoy my kids and not worry about what's going on within my house.



Camp Quality really is amazing, an organisation that gives families time to themselves that is so desperately needed. That is what we had on Saturday and when we got to go away to Dongara. Jayden loves that. He loves having me to himself and to be with the family. All the kids do. just loved it. really needed it great day Saturday.

My dear cousin is still in hospital and hanging in there. It's always so nice to see him. I'm on my way there now.

I went and saw him yesterday with a cup of coffee and we had a chat. We talked about Jayden again and life in general. He told me his heart bleeds for Jayden, he said it twice and put his hand on his chest as he said it. I could feel the tears well up in my eyes as I knew that He understood. He understands The reality of our lives because he's living it . and as I get up every morning pushing back the fears of the future and the reality of our lives he's living it, and gets it and it hurts.

I'm so very scared. I love my boy so much.


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Monday, 24 November 2014

Last few weeks

Haven't written in a while. Felt desperate to write after my road rage incident the other day and the heavy heart I've been feeling for my cousin. Lately He's been doing ok. When I saw him today he was in good spirits which was wonderful. Always puts a smile on my face when I see him. Lovely lovely man. It hurts to see him so unwell. Such a truly beautiful human being. So damn unfair.

the road rage incident set the scene for that week. it wasn't just about that incident but more about that incident allowing me to let out a whole lot of emotion that I'm forever burrowing within myself to get through each day. It set the scene for a week that allowed a lot of tears to flow.

This week has been better. We had a lovely weekend and are all looking forward to the school holidays and Christmas. Especially Jayden. He hasn't stopped talking about Christmas and Santa Claus. He's let me know how keen he is to start decorating today and as much as id like to wait till December I think I'm going to have to start now.

He's growing into a cheeky little man that has us all laughing often and forever keeps us smiling. He's also a rascal and a normal four year old where I have had to growl at him which has been very difficult. When I do he always says "I'm sorry mum, I love you " and that just adds to the enormous guilt I have for growling at him. He then asks for a cuddle and I squeeze him in my arms and never want to let him go.

I just love him so much and my other two. Every night I go to bed I watch him sleeping and thank god he is with me. I am forever grateful for each day, each hour, minute, second I have with him, with them all and I hope with every inch of my sole I get so many more minutes, hours, days and years, a lifetime.

Jayden hasn't been very well the last couple of nights though and hasn't been sleeping well. I can't help but worry and even though it seems like he just has a cough the panic inside of me is always there. Every cough he does I hear my inner voice praying "please don't vomit please don't vomit ". I'm Always terrified.

He woke up good but has been a little whingey and out of sorts throughout the day. He's otherwise been ok. I'm still worried though. I still panic. I always will. every time I see him even slightly lose his balance, look at me funny, anything that seems out of sorts scares me. I know that's just how it is and I'm trying hard to focus just on today, as hard as that can be.

We all had a truly awesome time in dongara with the camp quality family camp. Truly was the best holiday I think I have ever been on and solely because my kids were so very happy. Honestly, that is truly the best feeling in the entire world..... My kids happy. Awesome, awesome feeling.

I'm sitting in a waiting room at the moment and it's the first opportunity I've had in a long time to write in here and although so much has happened I can't think of anything more to add right at this moment.

So I'm going to end this blog entry with some photos instead of my little man.













Love my little man.

Monday, 17 November 2014

Road rage

It only takes an incident. Can be so small or it can be big and I find myself full of emotions.
On my way in to see my cousin who is in palliative care with a brain tumour I was harassed by a stranger with road rage. I had accidentally pulled in front of his car as I wasn't aware his lane could turn as well and he went mad beeping his horn at me. He continued to pursue me and when I had to stop behind a bus he got out of his car and banged on my window with his fist screaming obscenities at me. He was a huge man and he scared the living day lights out of me. I drove ofF the highway to get away from him and when I finally arrived to visit my cousin I was an emotional wreck. Keeping it together as much as possible I bought a coffee at the cafe at the hospital and took it to him.

He is such a Beautiful man my cousin. Truly he is and to see him deteriorating from this hideous disease is truly gut wrenching. He finds it difficult to speak which is incredibly frustrating for him but with time and patience we get a conversation happening.
I told him about the incident, he shook his head with disgust.

We talked about other stuff and I told him about the weekend we had away just gone, with camp quality in Dongara. I told him how much fun Jayden had and he said" it must have bought a tear to your eye ". That was all he had to say and that was it, I was balling. All the emotions came spilling out and I found myself sobbing like a child. The cry you have when you find it hard to breathe between sobs. I felt so bad for doing that in front of him when he has his own shit to deal with and he squeezed my hand with his and said "I need to hear you and be here for you too". That is the kind of man he is. Always thinking of others and he gets me. I'm so pissed that he is where he is at. He's one of the few people I know in my family who really gets this and I'm going to lose him. I know I'm being selfish but it's just not bloody fair. None of this is.
And when I see him I'm so happy to be in his presence but so bloody sad too.

He gets where I'm at. He gets all of it.

I've left now and sitting in a carpark writing in this blog. I'm so full of emotions today and the fear and anxiety are having a field day in my head.
So hard.

I took the kids away to Dongara on a camp quality holiday and it was truly the best weekend I have ever been on but would have been better if danny was there but he had to work. What made it great were the kids were so happy. Truly makes my day so special to see them smile.

I came back so rested and to have this eruption of emotions today has really thrown me.
There truly is no easy way to travel this journey.

I'm going to finish this entry and go do some Christmas shopping for my kids. Here's some photos of the weekend.
















Love my kids.


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Saturday, 1 November 2014

Jayden's make a wish

Jayden received his "Make a wish" wish today! He asked for a red cubby house!
It was delivered flat packed on Thursday and he's been counting down the days to have it up.



This morning to Jayden's delight 8 workmen from Hire a Hubby turned out to put it all together.




Every ten minutes he was checking to see if it were up and finally by late afternoon it was complete.



Awesome bunch of men that we truly appreciated for taking time out of their day to put a smile on our sons face . Love them all.
Next the painters arrived from QBE and partners to paint it red as Jayden had wished for.










Awesome bunch of people also.



We are so very appreciate of all their time and effort.

Bunnings also gave Jayden a huge stuffed toy dog which he absolutely adored



It was a great day for Jayden and the kids.
Thankyou to all that participated we are so very grateful.

And before I finish this post here is a pick of us before we headed out trick or treating.



And Jayden before bed.


Looking forward to seeing him playing in his new cubby tomorrow.

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Wednesday, 29 October 2014

MRI Final report

We went to Pmh today to see Dr Nick to hear the final report of Jayden's MRI.

It was just Jayden and I that went as Luke was unwell so danny stayed with him.

I hate going back there and I know it makes Jayden uncomfortable too. when we first arrived Jayden needed to go to the toilet so we made our way to the parent room. When we walked in there he looked around and said "I use to play in here". I so often worry about what he remembers and what he doesn't and it is often clear that he remembers so much more than I think, than I hope.

On our way out we ran into a beautiful woman I have spoken to over the phone but not yet met in person and she was with her beautiful boy.
It was so nice to see her and her little man. We sat and talked and it was lovely to be in her company. While we sat a nurse came out to see her son and put alma cream on his port. He was so upset by it all and tried so hard to stop it all from happening but lost in the end. That moment truly broke my heart. He knew what was happening and he knew what was going to happen and he knew it wasn't nice. I was so sad for her little man and so sorry that they both have to go through this awful nightmare. he shouldn't have to go through this. He should be doing normal little boy things. It bought back so many sad memories for me of a time with Jayden. An overwhelming feeling of hurt came over me and I felt the tears well up in my eyes. This woman is such a beautiful person and her son so precious. It makes no sense.

I looked at my little man as he sat playing on my phone near me and I just love him so much. I don't know how we lived through all of those times and I don't know where I found the strength from to do that. Because just the mere thought of it now brings me to tears.

Her little boy was then called in by the nurse and they left. Beautiful little boy and mum.

Jayden and I continued to wait until it was our turn, amongst other beautiful families and their kids. So many new faces .
One lady in particular stood out to me as I recognised the pain in her face. I knew that pain. I remember that feeling, that hurt and that fear . And although it's still in me, there was a time where it was so consuming and overwhelming that the tears were endless and there was no way to hide it . That was the face of this woman. I so wanted to go and give her a hug. I wanted so badly to be able to tell her everything is going to be ok, for I know those are the words I so desperately want to hear myself. But just as no one can say them to me I couldn't same them to her . But I wish I could. I so wish I could have wiped her tears away and made everything better. I really wanted to talk to her, and say something, anything, that would give her some comfort but I didn't know what. I didn't know if she would want to talk to anyone. For I know what she really wanted wasn't something I could give her. But I wish I could . In that moment, nick called us up.
I wished I had of said something to her . Anything. Rather than nothing.

We went to nicks office and he told us everything was ok and that Jayden's 3 monthly MRIs will now go to four monthly. Nervous about that. So his next MRI won't be until February.

Jayden was great with nick . When Nick did his examination he was cooperative and calm. We left shortly after and came home.

It's late now and I'm so very tired. Everyone's tucked in bed and so should I be.

I am so relieved and so very grateful that Jayden's MRI is all good. Hoping and praying they continue to be.



Jayden after playing with his big sister!


Jayden ready for Halloween!

Friday, 17 October 2014

MRI looks good

I am so very grateful to be writing thAt Jayden's MRI "looks good". Of course we have to wait to see the final report next Thursday.

The feeling of relief that comes with those words is like no other. I tried not to get too excited as we haven't seen the final report yet. But once we were told it looks ok, I felt the silence in my brain and The feeling that my head had stopped spinning. For now.

It's hard to explain the all consuming emotions of this journey and when you get a moment of relief from them, you really feel it. I know it won't last but when it happens I am so damn grateful, beyond words, grateful.

When we woke that morning everyone got organised and piled in the car. Working together like An efficient team that has done this so many times before.

We arrived on time and the kids went immediately to the play area in the waiting room and entertained each other. It was so good to have us together.





Shortly after arriving Jayden was called up to see the nurse and we all followed.
The kids jollied Jayden along as he had his weight, blood pressure and temperature taken. They really were beautiful to each other.









We then returned to the waiting room and waited some more. But the kids were so happy entertaining themselves and it was nice to watch them together. There was that definite feeling of support for one another. they were clearly there for each other.

Jayden was then called up into MRI and we followed the nurse into the waiting room there. A quick run down by the nurse and MRI person, more forms to sign then Jayden and I went into the next room where he was aneasthatised.

They didn't use the mask but he was still freaked out by the hose but not as bad as previously. It was all still crap and I hate putting him through this but he was brave and he did it.

I left after he went off to sleep. I hate leaving my little man behind. Awful, awful feeling.

The four of us then found a place to have a quick bite to eat and drink as all of us had fasted with Jayden.

Layla and Luke were wonderful. They made us laugh and were so good to each other. They never said it but I knew they were worried too and their feelings really showed through the way they were caring for each other that day. It was obvious.

We then headed back to the friendship room and waited.

It wasn't much longer before I saw my little man again and it was so emotional to have him in my arms again. A day that is loaded with intense emotion and all I wanted was him in my arms.

Everyone was happy to see him and We all headed home shortly after. So nice to be able to go home together. So very grateful to be together.

It's the next day now and that clear mind I had yesterday has gone but I know to try and focus on today. To take it day by day and to be grateful for every single one of them.











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Wednesday, 15 October 2014

MRI tomorrow

Jayden's MRI is tomorrow. Trying hard not to think about it but completely failing at that. Feel so damn anxious, scared and my head is spinning.
Couldn't sleep last night and have woken so tired. Awful recipe for a teary day.
Kids are all back to school today and I hate that. Wish I could keep them home.
Will take them all tomorrow with us, as it really makes a difference to all of us, especially Jayden, when we are all together.

It's early in the morning and I'm laying next to my little man sleeping. He woke earlier and told me he loved me then went back to sleep. He often stirs from a sleep, wakes, tells me he loves me then goes back to sleep. Or wakes and says "cuddle mum", so I snuggle up to him and he falls back to sleep. I love him so very much. It hurts to think about how much I love him and how scared I am.
Just the mere thought of my fears and tears run down my face. This journey is so hard, no words can truly describe the hurt, the fear.

These last couple of weeks have been especially hard and I feel like I've been walking on eggshells trying not to break apart. There has been times I've wanted to scream and times I've wanted to cry until there are no tears.

Jayden has been great and so have the other two. The school holidays have been wonderful and we have had so much fun together.
But In the back of my mind I have been stressing. the smiles on my kids faces have been getting me through. But inside I am truly struggling.

I know I'm not the same person I once was. How could I be? The innocence of not knowing about the world we are now in, has gone and now I am fully aware that really bad shit DOES happen. What I've become is a super nervous and sensitive mum about anything and everything that involves my kids.

When I look at my son I soak him up. I watch his every moment and worry that one day I may not have that privilege. I wish I could look at him and not have the feeling of fear inside me.

It's much later in the evening now and the cracks that have been surfacing for the past few weeks finally gave way to me tonight. It started at dinner when we told the kids what was happening tomorrow. Layla already knew but Luke and Jayden needed reminding. When Jayden realised what was going to happen he began to cry and asking to not have to go. all of the feelings and emotions for all the times we put him through so much awful stuff were suddenly dished up and slapped in our faces. My heart ached for him so much and it took every inch of my strength not to break down and cry with him. I comforted him, we all tried to cheer him up by putting our positive spins on the day ahead and lots of cuddles and tickles later he was back laughing again.

Afterwards we asked Luke to play with Jayden so we could clean up and Jayden was desperately wanting to spend time with his brother, whom he adores. but Luke decided tonight of all nights he would refuse and I just didn't cope. It was terrible timing. A mother tired, stressed out of her mind and scared beyond words, not a good recipe for a parent of the year award. I blew up, he cried, I felt awful and it was just a mess. Trying to keep it together when keeping it together is virtually impossible. My poor 8 year old copped it. We later talked about it and hugged but it didn't stop me feeling like crap for getting upset.

Afterwards I walked back into the kitchen to danny and balled. I cried for our life back. I cried for my son, my family and cried about tomorrow. I'm so scared.
Not a day goes by that I don't wish this never happened and we could go back to being a normal family. That we could go back to taking everyday for granted and not worry or fear for the future but just enjoy today. What I wouldn't do for that.

I just want it to all stop. For someone to tell me Jayden is cured and everything is going to be ok. I want so bad, for someone to tell me "everything is going to be ok".

Tonight as I put my little man to bed he asked me again "please can I not go to hospital tomorrow mummy. I don't want to go". With sheer sadness and worry in his eyes I explained to him that we had to, but that everything was going to be ok. That mummy was going to be there with him all the time. That he was going to be ok. He cuddled me and I knew he still didn't want to go but he fell asleep knowing I was going to be there and that everything was going to be ok. I so hope for that.

It breaks my heart, to see him so worried and I try with all my might to hide my fears from him.

He's asleep now. My tears flow. There is nothing easy about this journey.

Hoping and praying with every inch of my being, that everything will be ok tomorrow. I hope and pray for that.




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Monday, 6 October 2014

Chickens and being scared

The highlight for today was getting the kids chickens. Wasn't originally our plan as danny was making a pen for Layla's male guinea pigs but once he finished it it looked so much like a chook pen that we thought, let's get chooks! The kids were so excited and today we picked them up.



Jayden named his Penny, Layla's is Mary and Luke's is Buns. So cute.
They are now happy in their new big home and we all can't wait until we get our first egg!!!!!

The rest of the day was spent with my beautiful friend and her awesome kids. Everyone had fun and now I'm laying next to my little man as he sleeps.

I'm thinking of the conversation we had at his bath time today and of many others. He makes me smile everyday and truly warms my heart . He really is so very special and I love him so very dearly, all my kids.

This is how that conversation went...

I was washing Jayden's hair in the bath and i thought of my mum and I said to him. " I use to love it when I was a little girl and my mum washed my hair".
He said "when you were little like me'
"Yes" I said
"And did you go to sleep with your mummy"
"No I had to sleep in my own bed" I said.
A look of concern came over his face.
" that must have been scarey " he said . Were you scared ? " he asked
"A little bit " I said

He replied. "I wish I had of been there mum . Then you wouldn't have been scared ",

I love my little man so much, and he's right . I'm not scared when he's with me, only of the thought of him not.