A lot of the journal was written through the time Faith had no NG tube and then when the NG tube returned. So it was painful to read at times of what felt like failure and hurt was in the words I wrote. Even to this minute I still feel some failure with Faith's feeding and the return of the NG tube. Yes, there are many things I would have done differently. Regret.
Then I am here today, Faith has a gastronomy button and the path that led me here is not one I wish to relive or even I am happy with. I am happier now than I was, in that Faith is happier as she has no NG tube. She doesn't throw up as much and she can get any extra nutrients via her bard button. We struggle with her eating but as always we will work towards more oral eating. If she is unwell she can get additional medications through her button. I didn't expect so many things with the bard button and I am not used to it and I am hoping it will become easier because right now when I look at her button all I see is the wound breaking down on her back like it did when she was born. I just can't get rid of that image. But overall, Faith is so much better without the NG tube (as we all know) and the button is there to help for now. I must adapt like I have to everything else I shouldn't have had too. But I can only try and find peace and happiness in my journey. Faith is my delight despite the hard times.
But as I continued reading my journal I realised that in comparison to then I am more happy now. I have changed in some way, my writing has changed, writing has given me something more something I lacked before, the way I read has changed. Life has changed. I am happier.
And this is the story I had forgotten I wrote.
I was thinking about my childhood room, lemon coloured
walls. I remember coming home from school and finding lemon coloured walls. For
some reason I thought I had wanted pink but was happy with the lemon. There
were lace curtains on the front and side windows that looked out onto the main
street of my small home town. I had a fancy light shade hanging from the
ceiling, very lacy and pink. A second hand treasure from a friend. So in my room sat my pine single bed, a pine
bedside table with a lamp and tape player (yes, a tape player, I am ancient, lol).
But the most important object in the room was the angel picture that hang above my bed. The frame was white, chipped and touching it the wrong way would nearly make it fall apart. I
can’t remember it not being above my bed when I slept. There is a dark image yet with light picture of a dark and stormy
night, a boy and a girl are crossing a bridge that has seen better years with many holes in the wood and covered in moss. Fear and
loss are in their eyes. But little do they know there is an angel surrounding
them, protecting them. They just need to keep their faith taking it a step at a
time. I’ve always had my angel picture hanging above my bed. Now, I am all grown up
it has been reframed in a moss green colour and has glass over it, to protect it
from harm and it hangs in my little girl's room. A little something of me in her
room that will hopefully give her the hope it gave me in life’s trials.
