Tuesday, August 16, 2011

Well, I am officially home.
It is wonderful to be home, but also very very difficult. More than I care to realize.

Being back home, all the old issues that were getting me down still remain. Home to the barrage of hospital letters and solicitor letters, not to mention appointments. Tomorrow is mums chemo day, which is going to be 5 hours in the hospital. You dont realise when you are doing it all the time home much the routine wears you down. Not to mention the thick air and many stairs.

I have also come home to drama, so to speak. The proverbial brown stuff has hit the fan here and causing family issues.

I love the phrase that life is not measured by the number of breaths you take but the number of moments that take your breathe away. And over the last couple of weeks there have been so so many of those moments.

It has just been wonderful. I shared a bed with my niece and although she was a pain wriggling around and frequently elbowing me in the head, we also had some lovely cuddles. Love truly makes a huge difference and she is just so loving. She is 12 and carries the weight of the world with her. But the last week, she has been wonderful. Smiling, laughing, confident. Totally different person. Watching her transform took my breathe away on so many occasions. When I left last night, she put her arms around me, touched her forehead to mine, looked me in the eye and whispered, please dont leave me. I was chocked. And this morning, I got a message off my sister to say the my niece said she dosnt like waking up without me.

I have to get better. I cant run the risk of being sick and not being there for her. I cant put that stress on my family. My head is a mess and planning things I would rather it didnt. But I am happy. I am smiling so much. I have so much that I want to live for. Such a thirst for life.

I need to set her a good example. I need to do something with my life. I need to speak to my surgeon and find out where we are at.

Breathing, is probably the best it has been for about 2 years. But, I still have a very loud stridor. My resting pulse is still way high and the exhaustion is just silly. A flight of stairs drop my sats down to low 90's and walking for longer than 10 minutes gives me excruciating headaches. I dont know if these are related to my bodies sudden desire to empty itself, which is something that seems to be happening frequently. I dont know. I have hope for the future. I am happy, so happy. And the love I feel grows everyday. I dont want to go back to the dark places I have been in the past. But I do want to do something.

Right now its not possible. Anesthetic once a month knocks me out. It takes days for me to recover, I'm told its due to my liver, though that seems to still be doing alright.

I crave for some drama free time. To have my whole familiy live without any disasters. To have them all be happy.

A happy ending. <3

1 comment:

  1. So glad to hear you got away and had such a great time; your niece is very lucky to have you in her life.
    Sorry there was drama to come home to, hope it settles soon.
    Here if you ever need.
    love ya!