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.

1 comment:

  1. My heart goes out to brave big brother Luke. He has been through so much as well and those memories are probably very traumatic for him. I am so glad to hear that you are taking him to see someone, I just know that it will help him. I am organizing therapy for Gav too - I have realized in the past year that although he doesn't remember many things from that time, the trauma of it and everything he must still endure is with him. It's so important to ask for help - I am really inspired by this post! So sorry for your continued anxiety - hadn't realized how much MY anxiety had built until the previous scan as it was six months. Now that it is past and all is well I feel so much better. I know in my heart that all will continue well with Jayden too. I believe that! xoxox