Wednesday, 11 September 2013

Im sitting watching tv with my two older kids while Jayden is asleep in our bed. I've just left him snoring to now spend some time with the other two. Ones doing homework and the others happily playing a game so I thought id take a minute to write.

i hated leaving Jayden tonight. he was so snuggled in my arms and i just would have been happy to stay with that moment forever. With the sound of his little breath, the feeling of his little body gently twitching as he fell into a deep sleep, all of it, i just wanted it to last forever and to not miss a second. and now that I'm in the lounge room away from him, I miss him. I miss his presence and I just want to go get him and have him in my arms again.

A while back I spoke with a very special person in my life through tears telling them how i don't know how i will cope if i lose my little man. she said "it will be like he is in the other room, just as he is now, but you wont be able to see him, but he will be with you always." the thought of that was truly crushing, the fear overwhelming and I truly have no idea how any mother survives it.

I read the blog of a beautiful person, mother and friend the other day. She wrote in it a letter to her beautiful son who is no longer with her. I was at a friends house when i sat reading it while my little man played in the sandpit. I put my phone down after reading it and watched my little man playing.

How does a mother lose their son and live on, I thought. The feelings of sadness were overwhelming but nothing compared to what my friend must feel. How will I live without my son, I thought? How does she? All I could think was "please god don't let that happen to my son. Please don't take him as I could not live without him. I could not wake without his smile greeting me, the cup of teas we share in the morning, i could not live without him, not ever." The tears were welling with the thought and the sadness overwhelming and I just had to keep shutting it out, not letting my little man see me sad.

I thought how wished I could change it for her. I sat there so sad for her and tried to participate in the conversation with my friend I was visiting but all the while thinking of my friend and watching my little man playing.

I have no control of his future, no way of guaranteeing he will be ok. Odds are against him and all I have is hope. Hope that he will be one of the 10% that survive this shitty disease.

Some say "time flys", for me it feels like its taking forever. As every scan passes the next seems to take forever to come. Hoping, praying it will be ok. If it is, then its the what seems like longest wait for the next one. The hoping that a time will come when someone tells you "everything's ok now" and the praying that will be so. The waiting for those words to be said and the knowledge that it won't happen for many years, if we are lucky to get those years.

Jayden's next scan is October 17th, it marks his one year from treatment. It's a milestone but we are told a sigh of relief can't be had until two years out of treatment and even then it's only a "small sigh". I wish two years could be now, five years could be now and my little man still with me. I just want to hear those words so bad, "that everything is going to be ok". But I'm well aware I may never hear those words as no one knows that for certain.

When I spoke to my psychologist
a couple of weeks back i told her how much i need to hear those words and she told me. "You're going to be ok leisl, just as you feel your mum say those words to you, you will be okay. You will get through this". With each passing day I know I got through that day that's passed and so I will get through this day that I'm beginning. But how I wish things were so different.

Luke has an ear infection at the moment but that's of course the least of our worries. Jayden had a terrible night sleep last night, woke often and that panics me beyond words.

Will there ever be a day where I don't worry, stress or have moments of deep sadness? I doubt that but with those moments I also have moments of great happiness, gratitude and love. It is those moments I cling to and hope to have so many more of with all my children. That is the wish I have every night I go to sleep. That all my children will grow old and I get to share their lives with them. God I hope and pray for that.

- Posted using BlogPress from my iPhone

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