“Brenna would have turned 20 in April. Thomas would be 27 today. They both had the joy of eating, they both loved food. When this joy left them, we really had to question ourselves and make hard decisions for our children and not for us. I was adamant that I didn’t want either of them to die in hospital. They had to be at home, they had to be with us all around them.
We had a DNR signed, for Thomas. We were new and learning, so we had a meeting with everyone involved in Tom’s care plan so that if we panicked they could come to us but I didn’t want anyone to come in and overrule me. You should never get between a cub and the mother bear. That would not have gone well. We had more experience at expressing our wishes for Brenna. As their final days drew near we moved their beds into the lounge so we could all be close day and night before they died.
Thomas died in my arms, at home in February 2002. Brenna died peacefully at home surrounded by much aroha in 2006. We created special coffins for each of them, and they came back and stayed with us before their funerals.
We coped because you have no choice.
After each funeral we picked ourselves up and carried on because we didn’t really have a choice. That’s something I have always found interesting, people keep saying, I don’t know how you cope, I don’t know how you coped with all that. I say to people that we didn’t have a choice. We got dealt a hand, but we didn’t get dealt it all at once, it wasn’t like here’s four children and two of them are disabled and are going to die so just get on with it and go forth. It came as life does with all children, one by one and each of them with their own things going on, and it stacks upon each other, and so you cope because you love your children and want to do the the best for them I owed that to my kids, especially my two boys in the middle without the disorder, Hamish and William As parents, we role model for our kids. I need my kids as adults to say “yeah mum and dad did a really good job”. I believe both my boys now, as adults, have got a strength within them that they wouldn’t have, had they not walked the walk they have within our family. They might not realise it at the moment but in time they will look back and say I’ve learnt that because of my experience with my brother and my sister”
My two middle boys are living their dreams, Hamish has just graduated and is about to start his dream job in Christchurch and William is where he loves, in nature, keeping busy in a job he loves. I am proud of them. We are all very close and my purpose is to be there for Hamish and William and support them as they need it.
One day I might write a book. Until then I will make sure we have Chocolate Mousse or Pavlova for breakfast on Thomas and Brenna’s birthdays. That is important as they are my family and they will be forever”
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