March 22nd: Diary Extract
How do I explain how I feel? I don't want to worry too much yet today has really been a difficult one for me. I spent so much time trying to feed Tália and she would just put her hand in her mouth and pull it out again. On days like this I do question my decision not to tube feed. Usually I feel so sure and securein my decisions but now and again fear creeps in. I also know that fear can heavily sway a decision and that it can give us a blinkered vision, so I prefer to stay away from it. But today is just one of those days - I feel insecure. Our middle daughter (7 years old) has been acting up for a while - I think that it is because she is constantly exhausted. She has been very run down with a cold but today her teacher sent a note home saying that she was finding it difficult to read and breathe at the same time. Obviously when my other two girl are unwell, I get scared especially as doctors have said they could be mito carriers. However I am sure that it is just a cold and I wouldn't think twice about it if it weren't for Talia.
I guess its been a tough month for us - firstly March just reminds me of Dad - his birthday month and I am missing him terribly, secondly I had a beautiful holiday with my bro and family in Singapore - saying goodbye was very difficult for me. Thirdly Tália actually had gastro in Singapore and seeing her so weak was so sad. Fourthly we were forced to face education needs and questions. What do we do about schooling? Would she be integrated? For the first time in ages I have felt unsettled.
