He insists on walking everywhere now and it's difficult to talk him into getting into the pram which is great for him but tricky for us. Doing a lot more running after him now and that's always a worry when he has broviac lines and feeding tubes hanging. They are taped up but could always get caught on something so it's just that little bit more stressful.
We got the milk and were home a little after midday. The drive in and out now is such a 'normal' event for us now that we don't think much of it anymore. I never thought id be spending my days doing that, but here I am. And sadly we are 'locals' now in 3b and know many of the nurses well now. They have become like friends and jayden certainly has his favorites.
Things have still been tricky with everything associated with Jaydens condition but we have still managed to maintain some kind of new normal routine. I've now been able to get a few more things done around the house as jaydens feeds are not needed as often. we have managed to slowly build his feeds up so they are now hourly instead of half hourly. And because jayden isn't vomiting as much the washing has eased off a bit. He still does just not as often. He still doesn't eat anything, although he did have one chip a week ago and a mouthful of toast but nothing since. I still serve up his dinner every night always hopeful that one day he will dig in.
I know it's little steps and a week today he will be back where we started from if not further but I am forever hopeful that he will get strong for this round and be ok and with us at home again.
I spoke to dr Nick the other day and he told me the second round will unlikely be like the first as his body had already been beat down so hard by very very high doses of chemo. But I can always hope.
I try really hard not to think about what could be and when I manage to pull it off I have a not so bad day and even manage to laugh and have some quality time with my kids. It's always in the back of my head though and seeps through the guard I try to keep up, but I'm trying. I'm trying really hard to manage. I don't believe I will ever succeed in shutting it out but I'm trying.
Nor will i or the rest of my family be the same people we once were but we will somehow find a way to manage.
When I get through a day without falling in a heap i believe thats doing ok. if I keep myself busy and not left alone to think then that's coping too. Anything that requires me to be alone is a buggar.
When I write in here for instance it let's those emotions I am forever fighting back all day come out and it's all over for managing.
As I'm writing now I'm thinking about my dad. I don't often think about how jaydens situation is effecting him or Danny's parents or our siblings, as we are so in the thick of it you just don't realize others are hurting too. I sat down with him the other day and had a huge cry, cause he's great with that. He had alwAys been a brilliant shoulder to cry on. He said to me after I had my cry. " I don't often find it hard to talk to people about things but this leisl, I can't. This is too hard."
I really felt for him, he's such a beautiful man who loves his kids so much and it is truly killing him to see his grandson so sick and me so sad. I wondered to myself how on earth had he managed at all in his life. His dad died of cancer, then his sister whom was also his closest friend died of cancer, then a year later his wife (my mum) died of cancer, he had known her since he was 12. His mum passed away a few years back and now he's watching this new nightmare unfold. None of it he can control or stop and I know he would do anything if he could. He's a true treasure my dad and I love him dearly.
Life can throw you so many shit curve balls sometimes and you have to wonder why some people get more thrown at them than others. Why is that? Why has a beautiful man like my dad had to experience all that and still is, and why my family? Some would say its Gods doing, that he only dishes out the tricky stuff to the brave. But I certainly don't feel brave. Most days i feel like a fragile pansy, definitely not brave. And my dad, he's not brave either, he's a self proclaimed "sook" as he says. I don't understand it and I'm understanding it less as time goes by. Getting older hasn't made me wiser, just more confused. I didn't spend my youth imagining that when i grow up and be a mum my life would be like this. Im sure my dad didn't either for me or himself.
It got me thinking about the other day when I was driving home from hospital with Jayden asleep in the car and as usual on my own, thinking. My heart was aching and tears were welling in my eyes and i thought to myself how much i hope and pray that none of my kids will ever have to experience this excruciating pain of having a child with cancer. I hope and prayed so hard that they would never ever have to feel this pain ever in their lives. i truly could not bare to see them hurting this much. And heres my dad watching exactly that. I don't know how he does it or how he sleeps at night. He sees us every week and hangs out with us as much as is needed, he's always smiling , he's always keeping everything up beat as much as possible, plays with Jayden heaps and Jayden adores him. and he's always been and always will be a soft place to fall. And then I wondered, wheres his soft place to fall??
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