Month: April 2015

Hope

In the past week I have had a door of hope re opened.  I have taken master four for a cardiac cath and have just found out that his heart pressures are good and there is a window of opportunity open to go have his next surgery.     Yes Woohoo!!!!!  Even if the procedure/ operation is a variant to the full one I’m so happy. This means hopefully if things go well he will have more energy and be able to breath better. And the biggest thing will be having more certainty his life will be longer.  I had built myself up to expect bad news as the cardiologist had prepared us for many years to expect the worse. And since my son is so blue and puffed all the time it wouldn’t of surprised me if it was another bout of bad news. But this shocked me. I felt like saying to the doctor “are you sure you have the right family ?”  An amazing feeling when you don’t have to follow through on …

The unknown or the Unspoken

Is a life like mine a life people would prefer not to acknowledge? or is it so unheard of that its all so new ? Or do you hush and don’t mention it?   I often think back to when I had my first baby and how I actually did worry I would have a baby who had  a disability. Many people say it never even crossed their minds the thought of having a sick or disabled child. I did and I’m not so sure why this happened but maybe two reasons and one was I have a disabled aunt and I had lost my first pregancy. So I was somewhat aware of that kind of world.          But nothing and I say nothing can prepare you to the hospital world of seriously sick babies and children. No word No gesture No nothing can prepare you.  I felt so  thankful to be born and to be giving birth in this beautiful country where we had facilities to cater to such unique disease/illness. Thankful …

Letting people help 

This week has been a huge change to the normal routine as I have been receiving respite everyday for several hours.  This first week involved getting to meet the carers involved in A’s team and Master 4 team. A had a higher intensity care level so she needed more workers to rotate on her roster.  I have spent my days enjoying talking with these lovely carers and teaching them how I care for the kids. Miss A has managed to sleep in everyday which has given me the opportunity to get to know the carers.  It’s a weird feeling knowing I’m allowed to receive help everyday when I have gone so long doing everything the way I do myself. I felt guilty the first few days and I managed to go to lunch two days. My daughter probably had no idea I had even left for an hour. She was happily being kept comfortable and being entertained.  Finding a carer that fits in wasn’t a hard task as I thought it would be. One key …