Before their mummy died

Dealing with raising kids with a very sick mummy who is in and out of hospital

 We had only two years between diagnosis and saying goodbye.  I say "only" but Im sure there are other people who have less, much less.  At the time of her diagnosis, Joel was 8 months old and Celeste was 2.  They were only babies

We had four phases of the disease, including a 5 week period when they told us it was terminal.  Up until the terminal phase life goes on really.  You go to work, you go out with friends and try and keep normality as much as possible.  There are many, many hospital visits and stays in between.  The kids got used to this.  Mummy was at home or at the hospital, when she was at the hospital we would visit her and hopefully she would have some lollies or surprises in her top drawer.  When at home Daddy or Granny would look after them and take them to visit mummy in the evening.  Routine just kicks in

The worst times were when mummy was home for a good length of time and just as the kids got used to having her around we had to send her back to hospital.  One really sad experience is when I dropped her off at the front door of the hospital with the kids strapped into their car seats in the back.  As soon as they saw the hospital they freaked out and started crying - mummy kissed us all goodbye and walked in with the kids crying for their mummy in the back.  As I drove away Celeste said through her tears "Daddy can I just have 5 minutes more with mummy".   This was awful and we never did anything like that again.  She would catch a cab for future admissions unless we had someone to drop her off or stay with the kids while I dropped her off

When she was really sick at hospital we kept the kids away - it was her request - she wasnt able to give them the attention she needed and she didnt want to scare them with all the tubes and machines surrounding her

We would always try to keep the house quiet and calm as possible.  I would take care of the kids alone for as long as possible and then for the long stays Shanean's mum would fly over from South Africa to be with her daughter and help with the kids.  But apart from that we did try to protect the house from being thrown into chaos with lots of visitors and random care givers.  A "false santuary" of sorts.  This helps the kids get use to just the 2 normals of mummy being at home or at hospital and I think it worked

I kept working the whole time until things were terminal.  I probably over-did this a bit.  At work it was a different life with normal outside world stuff going on and it was always busy, so you could easily blow 8 hours with your mind away from things at home.  This could be dangerous though as it becomes a bit of a drug, there were times when I should of been at home or the hospital but I prioritised work.  But on the other hand Im not sure I would have made it through the 2 years without it - just striking the right balance is important