Sunday, 9 December 2012

Xmas in Mandurah

We are heading home from an overnight stay in Mandurah. Every year my dads family get together in Mandurah and celebrate Xmas. We weren't sure if we were going to make it this year but thankfully nothing made us have to visit the Hospital like last week and we managed to get there.

It was weird at first to see all my dads family again as this time last year Jayden was showing symptoms of his tumor but we didn't know then what it was that was wrong with him. I remember having the worrying conversations with my uncles and aunties, talking about the unanswered questions from doctors and my gut feeling telling me something was wrong but not knowing what. This time last year was the last time i saw many of them.

At first it was a little confronting and loads of memories flooded back of a time before Jayden was diagnosed. Its always hard to swallow the confronting knowledge that your son is no longer the boy he was health wise and never will be. Obviously we live with it day in and day out but reminders of what life once was is hard. I miss that. I miss all of it.

It was good to be in their company again. Each one of them at separate times spoke with me, cuddled me and expressed their love and hope that Jayden will be ok. So many people in my fathers family have been affected by cancer in some way or another and can sympathise with our situation in some shape or form. They all know that it's different for everyone and none of them would pretend to know how I feel but their very real concern for us made it truly a much needed place to be this weekend.

The highlight of the weekend for the kids was one of my uncles dressing up in a Santa Claus outfit (one of them does this every year) and singing Xmas carols with us all then handed out a stocking full of goodies for each of the kids. Jayden was over the moon. he loved the xmas songs and gave Santa a huge cuddle when he got his stocking. Most definitely a big Santa fan! When Layla and Luke were his age they were terrified of Santa but not Jayden. Takes a lot more than a man in a red suit to scare him, that's for sure.

We are now heading home with bellies full of far too much food but a feeling of thankfulness that we have such a beaut family. For all its ups and downs, trials and tribulations they have always stood fast together. I'm so grateful I have them. These last 8 months have truly put my life in such clear perspective of what's truly important in life and its not what kind of car you drive, house you live in, or clothes you wear but instead the people who love you. It may not necessarily be your family but who ever they are, those that love you are whats important. To put your stamp on this world that says you have loved and have been loved is far more important than how many dollars you have in the bank or how high you climbed the corporate ladder. For me, that's what I think. I know for Jayden he will always know he is loved and will know to love. at least i hope I've got that part right in parenting with all my kids.

It's a few hours later and we are now all in bed. Im laying next to my little man whom took quite sometime to get to sleep tonight. the steroids have been playing havoc with his sleeping and an absolute nightmare with his diet. It has got to the point where we have had to stop him from eating at times and distract him with whatever we can because he simply doesn't stop eating. His tummy is so round that his belly button is poking out like mine did when I was 8 months pregnant. The little lump I was worried about I'm now sure that its some kind of hernia because his poor little tummy has gone from digesting small meals to being filled to the top with enough food for an adult not a two year old.

I never expected it to get this bad and certainly wasn't pre warned it could be this extreme. We have even reduced the dosage as required and that hasn't made a difference if anything it seems to be getting worse.
I just can't wait till he's off them. He finished his antibiotics today which was great, one less drug. It also meant we were able to remove his NG tube. yah! I was so pleased to see that go in the trash.
Now its just the steroids to go. Poor little man, he has put on so much weight and when we went for a walk over to the park today he was really struggling. At least i think its his weight and the steroids. I don't know for sure what it is but I've written about it before, one minute he's ok and the next he's Not. I cant put my finger on it but I know it feels like something is wrong.

When i picked him up today after he'd had enough he snuggled into me so tight. I walked home with him like that, he wasn't going to let go of that tight grip and neither was I. we have many moments like these , that make me feel as if he knows. that we both know. Its as if we both know how special these cuddles are and how much we never want them to end. And i don't. when I'm alone with him I'm so happy but so sad at the same time. I don't ever want to let go of my little man, I never want to have those cuddles taken away from me or the special memories we make every day.

Tonight when I put him to bed I laid next to him with our faces close together and looked at him. he put his hand on my face, looked at me and said "love you much mum". I told him I loved him very much too and gave him the biggest cuddle. its so hard not to cry when I'm with him like that. i hold him like its my last cuddle because i know one day it could be. i love my little man with every inch of my sole and damn this journey is so hard.

With Santa today

In the bath at Mandurah

Reading a book tonight :)

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