Today was our first occupational therapy session where Faith, the OT and I painted. Faith was apprehensive at first. She did eventually slip her little fingers into the paint and then into her hair. She is still reluctant for anyone to touch her hands but is doing so much better. She allowed the OT to use her hands to hold the paint dot markers and draw and squibble. It was so nice. Something normal and fun for all.
Sunday, 22 September 2013
Tuesday, 17 September 2013
Today has been a day I’d like to forget or even better start again. Faith has a UTI...again. She does not have a temperature or look unwell she just feels really sick in the tummy. Her tube feeds seem to equal vomit but we are getting some food into her throughout the day. I read a post at “What do you do dear?” blog and as I read it tears streamed down my face. She wrote of her struggle with ‘forever.’ I could really understand how she was feeling that day. Her son will have Spina Bifida forever. Just like Faith will have it forever. It is a subject close to my heart as lately I have been struggling with Faith having Spina Bifida forever. Right now, when I am in the thick of really bad days and tears seem to be on speed dial I wonder will the good days come again? And yes, they do appear again and I am grateful for their much anticipated arrival.
This morning was a horrible morning. Faith was unwell and I was struggling to manage. I wanted to hide but I could not. I had to face it. Making it through the day was a challenge. When we sat her in her stingray pram and took her for a stroll in the garden she smiled, she giggled. She reached out and touched the washing blowing the warm spring breeze and she touched the leaves on the hedge. She took it all in. These are the moments I hold onto when I think how can I make it through another minute? It is not my strength but God’s alone sustaining me.