Tuesday, 24 June 2014


It's seems like ages since I last wrote in here. It's not as if I haven't tried as there's been many times where I've began an entry then days past and I don't finish it and hence it doesn't get posted.

Jayden has had another ear infection and yet another round of antibiotics. Our GP is talking about him seeing a specialist for grommets but wants to wait and see for now. So far he's been doing ok and just finished his last lot of antibiotics and I'm hoping he won't get another ear infection or have any need what so ever for more antibiotics. He's otherwise doing well. His balance has been off lately but I never know if that's just him or if it's got worse. I will always worry that's it's the latter and feel very anxious.

My Anxiety has been a nightmare lately and I am assuming that's because his next MRI is approaching and basically just life now as I know it. Always anxious.

My older son has anxiety issues too and when I spoke with my psychologist about him he suggested he see someone and recommended a child psychologist. Luke has been seeing her with me coming too, for the past three weeks. The idea at first was for him to see her without me being there but it was evident in the beginning that he wasn't having that, and we didn't want to stress him out any further. So I've been working with him through things. It's been good because it means we get that one on one time together every week and I think it's been really worth it. At first I wasn't sure about it all, as he didn't respond well to the lady, but the most recent session made me realise we definitely needed to be there.

Yesterday was his third session. We played a game he is familiar with where we are given a deck of cards each. (It's basically a deck of emotions. Each card a different emotion. ) On each card in the deck we have a different face and under the face is a word of the emotion that matches the face. Sad face = the emotion 'sad'. Happy face= the emotion 'happy' etc. my pictures has girls faces and Luke's has boy faces.

Previously we have picked cards out ourselves of emotions that we have had that day and talked about why we had those emotions. On this particular day we used them in a different exercise...

We first briefly talked about when Jayden was diagnosed and we were both asked to close our eyes and think about when Jayden got sick, when we went to chicago and when we came back for Jayden to get more treatment. When we opened our eyes we were asked to draw a memory of that time. I was specifically asked to draw a memory that Luke would definitely remember. And Luke just had to draw whatever memory he had. He wanted to draw his picture in private so he sat on the floor on the other side of the couch so we couldn't see his drawing.

My drawing was based around a place that we were recently reminded of. Not long ago we received footage from the documentary that we were involved in when we were in chicago. Luke and I had been watching bits of it and in it was footage of a place we use to go when we were in chicago. So that's what I decided to draw. A place that we use to go to for walks where there was water and trees and he and Jayden would throw rocks into the water.
This was my drawing.

After I finished my drawing I asked Luke if he remembered my memory and he did. What surprised me though was his feelings from that memory. He was asked to pick out of his deck of cards the feelings that he had of that time in my drawing. From his deck he selected over ten. Amongst them, sad, sorry, confused, worry, fear and a whole bunch of other emotions that raised concern. His memory was of when the camera crew were there also which explains his feelings of confusion and suspicion. But the others came as a surprise. It really concerned me.
My feelings of that moment were just worry and happy. Happy to see them playing together and always worry for Jayden. But it didn't spark the emotions Luke had.
Luke was then asked to explain why he had each emotion which as would be expected, he struggled with that but did his best. They were all centred around his concern for Jayden and confusion of being relocated and scared about what was happening. I felt so sad for him. I had no idea or time to worry about him or Layla's feelings during that time and they were BIG. Really BIG. I felt terrible, absolutely terrible.

She then asked Luke to show us his picture of his memory of that time. This is what he drew....

When I saw it, it took all my might not to burst into tears. A powerful, and emotional drawing. Jayden on the hospital bed crying, big bright lights above and doctors on either side not looking happy at all. I felt every emotion of that time at once upon seeing this picture. All the sadness, fear, sheer torture of it all came rushing back and it took all my might not to fall apart.

He was then asked to pick from his cards the emotions he felt at this time. He refused. He didn't want to play anymore, and I have to say, neither did I. But of course I was next. I was asked if I could place the cards down that describe my emotions at this time. Well. Let's just say, there weren't enough cards. When I had them all placed down face up in front of us I knew the next question was to explain why I had each emotion. Well, it took all the mummy strength I had to look brave in front of my son and not fall apart whilst describing why I felt each emotion. After each she asked Luke if he felt the emotion for the same reasons. Sometimes he nodded but more often he said nothing except asked to go home.

It was a very intense session and reminded me that everyone of us has been affected a great deal from this journey. Everyone of us. We have all been affected deeply and carry that with us everyday and for everyday forward and into the rest of our lives. It is now a part of who we are. I am so sad that my family has had to endure this, that my son has had to live this nightmare and his brother watch in horror. That his sister worries everyday like her mum and we all as a family try desperately to live the normal life we once had, when we know it isn't, and never will be.

Saturday, 7 June 2014

As I learn of another child passing the lining of my bubble of hope in which I live in, feels as if it's getting thinner and thinner. And the overwhelming fear of how long will it be, before it too breaks, grows stronger.

As a cancer mum I live with the fear of the possibility of losing my son, everyday, and the knowledge of another mum actually living that fear, breaks my heart, and makes it all the more real.

Not a day goes by where I don't think of this mother and every other mother I know, who has lost a child to cancer.
I hold my little man closer, hug him tighter and tell him often that I love him, whilst the fear of the future lingers within me.

Jayden is still unwell with his ear infection but it is only an ear infection. I will take an ear infection any day. He is otherwise in good spirits and I'm so very grateful for that. I'm so very grateful for him and for being able to spend today with him and my other two kids. I love them all so very much and hope and pray I get a lifetime with them all.

Tuesday, 3 June 2014

Jayden woke today and said to me, "mum, my headache has gone !"
Music to my ears. After days of telling me his head hurt I was so relieved to hear him say it wasn't anymore.
I decided not to take him to Kindy today as he is still very congested and has an awful cough.

I'm glad I did as I had a truly beautiful day at home with him. He's such beautiful company, I just love him so much.

Today when I was trying to reach things from the top of his wardrobe he went an bought in a little stool for me to stand on. " use this mum", he says. "Will make it easier ". So thoughtful. Just gorgeous.

It's late and I've found myself so anxious it's driving me nuts. Felt a panic attack coming on whilst watching an advert on TV and just new it was going to be a late one for me.

I'm so tired now though that I need to sleep. Just wanted to jot this all down quickly.

Little man is snoring lightly. Looking forward to snuggling up to him.

- Posted using BlogPress from my iPhone

Monday, 2 June 2014

Luke's birthday.

It's Monday night, the end of a long weekend and back to school for the kids tomorrow.

Have loved having them home and am definitely not a fan of the rushing around and getting lunches organised etc. most of all I hate them being away from me. They are growing up so fast .

Luke turned 8 today! Where have all those years gone? I don't know. I feel like Luke has in some ways grown up over night. Like there's a huge gap in his life that I totally missed out on. In many ways I have and continue too. I'm always thinking about Jayden and worrying about him, fussing over him and Luke I feel, gets left behind. I don't mean it to be that way and I try very hard to be conscious of it. I'm getting better but I feel so sad that he had to miss out on so much in the beginning of this nightmare and I will never forget that. He's a tough little cookie and I know he will get through but I wish I had of been there for him when he needed me.

And he turned 8 today. So proud of my beautiful little man . We threw him a wonderful party but for the most of it I think he just wanted to play with his new toys on his own in his room. In fact that's what he did for some of the time. He's a sensitive little man full of emotions like his mum, and a worrier like his mum. I love him so much, I wish I could take his worries away.
We took some beautiful photos but I haven't had a chance to put them on my computer to then put them on here, but I will, when I do.

Jayden is still unwell but you wouldn't know it as he played with his mate today at Luke's party. To me though, I knew he wasn't himself. He just didn't have his normal look. Not to me anyway. His eyes were sleepy and his face slightly puffy. Just not himself. He's still running a temp but not as high as the previous nights. We had the doctor out to see him yesterday and he said his ear infection had cleared but his throat and cold is still lingering and I'm hoping and praying that's all it is.

We laid in bed tonight and talked about Luke's birthday and how he was now 8! He was very chuffed. Jayden asked " when will I be 8?" Luke said in four years time.
I laid there with a lump in my throat, thinking, please, please please, let us see him turn 8. Let him be 8. Please. Let him grow old. I hope and pray with all my might for that. For all my kids to grow old and be happy.

- Posted using BlogPress from my iPhone