Friday, 23 November 2012

New normal

I just finished reading a blog entry from another mum with a child with ATRT and I'm shattered. I don't know how she gets up in the morning and I often wonder that about myself. Our children are fighting a dreadful disease and we can only be a spectator. We can't change it for them, stop it, or make it even better. We can only love them and be there for them in anyway possible and that just doesn't feel at all like its enough.

Why, can't I stop it, change it, make it better? What I wouldn't do, to do that. I feel so damn helpless, all I can do is wait, hope and wish with all my heart this monster does not come back in Jayden. It's such a torturous way to live. Every day, knowing it could be growing, returning. I watch every detail in him, every movement, the way he looks, if he holds his head, if his speech sounds off, panicked at the slightest change.

It saddens me what our lives have become. A clock ticking, hoping no dreadful alarm goes off.
We are away on holiday and I should be enjoying this time as much as possible but no matter how far we travel we cannot run from our lives as we know them to be. I had hoped that with some distance from the hospital and home we could forget for a while what has happened. But thats not how it works. I could never forget and neither Danny, not even for a second.

I've tried though, believe me. I've tried and continue to keep trying to enjoy and be the normal mum in the normal family that we use to know. Its hard though For we are not the family we use to be, far from it. So now my struggle is to live this new normal life, how I do that sometimes, is difficult.

A simple thing like a venture out as a family to the shops or yesterday to a local tourist attraction I now find difficult. I find it difficult when strangers talk to me and Jaydens with me. What I find difficult is I know what he's been through, and I know what he's fighting and his unknown future. They don't. They chat to me about the weather and all things not important (not to me anyway) and I have this urge to want to pick him up and put him on top of my shoulders so everyone can see him and yell at the top of my voice:' THIS IS MY SON JAYDEN AND HES FIGHTING A RARE AND AGGRESSIVE BRAIN TUMOR AND HE'S AMAZING!". I don't.

Yesterday however I found myself blurting out his condition to anyone and everyone who spoke to me. I Somehow managed to turn any conversation I was having into the topic of Jayden. I'm sure that's not what these people especially wanted to hear but I couldn't help myself. Just because he looks fine doesn't mean he's ok and I wanted people to know that. I wanted people to know that he has suffered and it's crap. If they had given me the opportunity I would have told them every detail but they weren't anywhere near as interested as I wanted them to be, in fact some made it quite obvious they wanted to exit the conversation.

I so desperately want to be a normal person enjoying a normal outing with my family but there's nothing normal about it anymore, not the normal I use to know anyway. Its so hard for me to get on with life as if nothing has happened and just go back to how it was. I know thats not whats expected but yesterday when we were out it was the first time we were all together amongst people with Jayden minus all tubes and now with a little hair and I just felt like I needed to tell people not all is what it seems. I wanted people to know and that in some way it may touch them. That they would look at their lives and realize how damn lucky they are and to spare a thought for children like Jayden, who aren't so lucky. I'm not sure I achieved any of that but I needed to say it. For Jayden.

I know in my heart and mind he's my hero, he's my whole families hero. I know that we will together have that bond and knowledge of our strengths and our little super hero Jayden will always be our hero. What we have been through is so significant in our lives and always will be and as we continue to travel this road of uncertainty i just only hope in some small way he can be significant in others. That by telling these people in the shops and writing in this blog that we can somehow be understood by others as the new family that we have become and that his story will have touched lives in some small way.

I know I'm rambling now but it's really hard not too. I will never forget every second of everyday from the first moment a tumor was found in the back of Jaydens head and although it is not there now our lives will always be held by a thin thread with the knowledge that it may return. It's hard. I want to change it, but i cant.

Today and everyday I hold him like its my last, cuddle him for a long as possible, watch his face light up with smiles and soak up every second of them. Laugh with him and cherish those moments, cry with him and comfort him like a mother knows how. Every second of everyday I have with him I want locked away in my memory forever. I don't know when he may be taken from me and I have to live with that. But away from this blog I make sure every second I do have with him, is a second worth living.


  1. Hi Leisl, I love it that you are telling strangers about Jaydens & your families journey. Especially since nothing looks like it seems now with Jaydens signs of cancer less obvious. Yes, put him on your shoulders and shout it out to everyone!!! Jayden has affected so many people's lives and he will continue to do so. He is a very special little man and I feel so lucky to have met him & your family. Your journey has changed my life and believe me everyone that meets Jayden is deeply affected by his infectious happy bubbly nature! Lots of love & light, Nadja

  2. Your blog and Jayden's "journey" has affected me deeply, I appreciate the important things in my life so much more now and am somehow managing to put less energy into worrying about the unimportant stuff. I am deeply touched and changed by your story and thank you for giving me this gift.