Thursday, 6 December 2012

Flat day

I'm not sure where to start this entry as today was no doubt one of my 'flatter' days. I know I'm going to struggle through the day if it begins with me crying at some point in the morning. Sure enough that's how the day was as that's how it started.

I'm so tired now that I should just go to sleep and believe me I want to but it's just not coming easily tonight. Everyone is asleep as always and I'm the last one to fall.

Jayden's worrying me again, this time it's about the steroids and the dose. He's on 6mls and it just seems very high even though its being tapered off over the next seven days. And He just doesn't seem himself. he has moments where he cant keep walking or playing and just wants me to pick him up. he will be playing one minute happily and the next stop and ask me to take him inside or just carry him. its definitely not usual two year old behaviour but then, he's not your usual two year old. And He has a lump on his tummy at the moment that looks as if something is trying to poke its way out from the inside. It's not red, itchy and its not a bite. Just a lump. I'm a little concerned because he hasn't stopped eating and his poor little tummy is also distended from all the food and now a little lump. When you touch it, it hurts and he was complaining of pain in his lower back area earlier before I discovered the weird lump.

Ironically I discovered it after Nick rang me this afternoon to check that everything was ok and to cancel tomorrows appointment and make it the following Friday.
I could still email him and began to then felt maybe I'm making a big deal out of nothing so I saved it and thought we should wait and see how he wakes tomorrow.

Every time we put medicine into his little body I can't help feel an enormous amount of guilt that I am voluntarily administering stuff that could harm him. I know the benefits out weigh the risks but honestly, it's hard. And I find myself constantly worried about those side effects and if he will have any.

Everything is hard about this. Im so tired of it all right now and would just love to have some time where he is 100% healthy and enjoying being two years old.
It frustrates me so much to watch him constantly struggle.

We took him and the kids to the river this evening to have fish and chips and play in the park. But Jayden wasn't himself, and although you could see in his face he wanted to join in with the other two and have fun his little body just wouldn't allow it. He just wanted to be carried and complained about how cold he was and that he wanted to go home. So he spent most of the time we were there, wrapped up in a towel on my lap.
I'd love to see him running and climbing with the other kids and I know if not for this crappy diagnosis he would be right now.

Everyday is a reminder of his diagnosis, chances and health right now but it's also a reminder of how lucky we are to have him with us. Life as i knew it before was never given a thought of how lucky i am my kids are with me, it was just a given. Now i see it so differently and soak up their every smile, laugh, tear, take the longest cuddles and wish i could make every moment with them last a lifetime.

My little man is sleeping soundly next to me right now and every night I fall asleep watching his little face. His perfect little face. I watch him breathing and his eyes move under his eyelids to dreams and hope that his dreams are happy ones. some say we can see the future in our dreams. i hope Jayden can see his and it be a great one, a long one and a happy, healthy one.:)

- Posted using BlogPress from my iPhone

1 comment:

  1. Dear Leisl,

    i thought i will share this story with you as i have been following your blogg for months.

    the other day i have met this 18 years old guy who was working. we got chatted and he told me how he forgets short term thing like surnames. just random thing but then they come back. then i asked him if he knows why. thats when he told me that when he was 9 he had brain cancer. i got so exited in a way that he survived thinking of your boy! he went through chemo etc and he has a big mark on his head but he is working, living life normally. i asked him about his mum, and he said all she remembers is date.... he also could not walk and had difficulty in talking but he recovered. i pray for you and i hope that Jayden can stand back on his feet and all you will remember is the date... sending lots of love x