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.

- Posted using BlogPress from my iPhone

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.

- Posted using BlogPress from my iPhone

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.

Thursday, 2 October 2014

Its been so long since I have written in this blog about Jayden and what he and our family have been up to. Its not from lack of trying, as many a night Ive started a post but not finished. But I think sometimes I feel if I dont write then I dont have to think about the reality of our life. Of course that's not possible and instead I lay awake thinking, worrying, and or cry myself to sleep. There's no winning answer or right way to travel this journey, that is for sure.

As Jaydens next MRI approaches I have wanted to write, even more. Many sleepless nights where Ive needed to, but haven't. Scared that if I do in that moment I will open up the floodgates of the emotions I have tried so hard to contain and wind up curled up in the fetal position of my kitchen floor. I feel them in there and how much they hurt. The fears, the overwhelming sadness and Im so scared of going there. I know what that feels like, I know that overwhelming sadness, and I spend every waking hour trying to stop myself from going there.

But as the MRI date approaches there, there. Intense, overwhelmng. I feel like im on that tightrope again barely keeping it together, scared out of my wits. There is no denying I am petrified about Jaydens  MRI. They don't get easier. Never.

And the stupid thing is that I think Im actually keeping it together and that no one around me could notice Im struggling. Not my daughter however, she sees right through me. Out of the blue she asked me the other day when Jaydens next MRI was. When I told her it was October the 16th she said " I hate it how they are always just after the school holidays". I replied, "I dont think they are alwasy after the school holidays", because I actually didnt think they were. she replied "yes they are because every school holidays you are really stressed about them".
She knows, she sees and she feels. She once told me the only time she really worries about everything is when the MRI is approaching because she knows I am worried.
I wish my kids didnt have to worry about this. I hate that they hurt and worry too.

Im not sure what to write now as Im feeling that floodgate open. my heart aches. Im so scared for my boy. For our family. I love him so much it hurts. Every little piece of him is perfect to me and Im just so scared.

Its late and everyone is asleep but me. I try to focus on something else in a failed attempt to wash my fear away but it doesn't go away. It never goes. I feel sometimes like Im holding on to a hope that's not real and my heart cry's inside.

I'm not going to write anymore but instead post some pictures of what my amazing little man and his siblings have been up to for the month that's just gone, September...

here they are ........

We had a Mexican party to raise money for Camp Quality and this is Layla, Jayden and Luke with their sombreros on..
Jayden at kindy, creating. Art is his favorite thing to do at kindy.

Two crazy boys together

 Jayden at the zoo with mum

 At an indoor playground with big brother Luke

 Off to the Perth Royal Show, which we all went to as a family and had a brilliant time. Jayden went on as many rides as he could and played the sideshow games. Everyone had a blast.

 Having fun at home in the clothes basket with big sister Layla
 Toy box
 Jayden had a nasty fall on his scooter (on dad duty)
He was so brave and recovered quickly.
 Both Luke and Jayden were invited to go to the Neumont Boddington mine thanks to Jess Hayes from Go Gold Australia and the wonderful crew at the mine. the boys truly had a blast. beautiful bunch of men and women who made jayden and luke feel very, very special. just love them for putting big smiles on my kids faces and creating beautiful memories for us.

In deep thought at the park

 And more......

When I look at these photos I smile. My little man sure knows how to embrace life and love it for all that its worth. every second.
We have certainly learnt how much every second counts.
I know I appreciate each and every one, every memory and every moment and I hope and pray everyday that I get a lifetime of moments with my son, with all three of my children.