Monday, 1 April 2013

Easter cont.

Sitting in my lounge room with the TV on but not really watching anything. Everyone's in bed and as always I find myself alone with my thoughts. If I focus on our Easter it was undoubtably the best ever. Not because of what we did or where we went but because we were together. Knowing what it's like to not be together for Easter makes being together so precious. What we previously took for granted we are so very grateful for now.

Watching the kids faces in the morning when they saw their treats was priceless. Jayden's was complete surprise as it really was his first Easter, certainly the first that he will remember and was aware of. Their excitement of hunting for Easter eggs that the Easter bunny left was pure joy to witness. All three with their little bags, running around the house looking for eggs. Of course Jayden had the upper hand as he had me helping him but they shared them all out in the end anyway. Beautiful moments that will collect in my mind forever as beautiful memories.






I sit here now thinking of him today, of all my kids. Thinking about the video I took from Easter in the morning that Jayden luke and i watched before bed and realising it was mostly all of Jayden. Worrying That I'm spending so much time making memories with him that I'm forgetting to do the same with my other two kids.

I love them all so much and I wish I could spread that love out evenly but there is no doubt I focus so much of it on Jayden. Trying so hard to soak up every second of him because i worry about a future without him.

Everything about this journey is far from normal. Everything about it has changed everything about me, including my mothering. Before this I know I would have been more attentive to the other two, I know I would have. Now I'm so consumed by fear of losing my son one day that I'm trying to squeeze in as many cuddles, time and love as I can with him. I worry I don't do it enough with my other children as well.

Being with my children is where I find peace, where I'm at home, and where life has meaning. To even imagine losing one is truly crushing beyond belief and to know there is that possibility is The nightmare i live.

I know I shouldn't think about the statistics, believe the odds and just live for today. But today is no longer the normal day it use to be and today is a struggle to get through without a tear.
It is getting easier. Not the pain or the fear but living with the two. It's learning how to live with it. Learning how to manage each day and get through it without falling apart.

I now know a friend who has lost her precious boy to this dreadful disease and not a day goes by that I don't think of her. Of how she gets through each day. Im so scared of what has happened to her will happen to me. I received a message from her today and my heart broke into a thousand pieces for her. I don't know how she can live the rest of her life without her son. I know that she will, she's strong and a fabulous mum, but I don't know how she will.

This is truly a dreadful journey for any parent to travel. For those of us who still have our children a sense of guilt precedes. We are reminded every morning how lucky we are and to never take that for granted. We watch our child's every move for any change in movement, speech, etc, for every second of every day. we count down the days till the next MRI, stressing about the results long before the MRI has been done. Sleepless nights, maximum anxiety and pain that has no true description. It's our life now.

Jayden's MRI is coming up soon and I'm petrified. I wish that there was some way I could check him everyday so that I could breathe that day rather than wait three months in a constant state of anxiety that increases as the day approaches.

I went to the park today with my boys. I ran around with them, chasing them. Sliding down the slides and pushing them in the swings. Some healthy time spent looking after myself which I'm most happiest doing with my kids. But with every happy moment a dark cloud looms. One that stays above me that no matter where I go its there.
I can only hope my kids don't see it in me. Hope that they never know or feel this pain.



It's late now and I'm off to bed To snuggle up to my little man. To hope with all my heart and soul I get a lifetime of cuddles from him and all my kids. To see them all grow old together, have children and watch their children hunt for Easter eggs. If i were to get an easter wish, that would be mine.

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