My family is my life. In our family there is me, Sarah, my husband Darren, my daughters - Fiona who is 17 and Rose who is 14 and our son Sam. Sam is nearly 12 and has Down syndrome. This is not a major issue but he also has a terminal heart condition. Darren has very bad arthritis. Sometimes he is in bed, and on better days he is up and mobile in a wheelchair. My elderly mum lives independently but I shop with her and take her out and help out around the house.

"The school is magic, I am always singing its praises. Help is there for Sam but he is not cushioned or given an easy ride. They understand his capabilities. It's the whole school climate - the kids there are amazing - no bullying throughout the school. The staff and pupils are just great."

Sam goes to our local primary school and loves socialising and being at school. He is doing very well there - when he is well. Sadly, this winter term he has had about two-thirds of the term off sick. I taught the teacher aide how to deal with any medical emergency he might have. The school allowed me to be part of the interview process for the teacher aide and I feel comfortable with her. She is an older woman who has children of her own. She is brilliant with Sam, just like a second mum. We are so lucky because she is going to the intermediate with him next year.

I am fearful of Sam's transition into a much bigger intermediate school next year. At present Sam can move around the school, as he can walk about 50 metres on the flat without a rest. At the intermediate, distances are much greater, and he will have to use a wheelchair and lose some of his independence. It will be a big thing for him, as well as facing a new group of kids who don't know him.

Sam and Darren both have ongoing health issues. There are care and support days available for both Darren and Sam so we could have a break from caring for them.

We can get a carer for Darren but we cannot get a carer for Sam. People, including our wider family, are daunted by the responsibility of caring for a boy who can stop breathing and need oxygen. The shortage of trained carers able to deal with severely impaired or unwell young people has to be related to the pay rate. The carers get $64 for 24 hours care. With shared care they get $40 for a 24-hour day. This is a low pay rate for work with high responsibility.

It's tough. If I get the flu, and especially if Sam is sick too, there is no going to bed for me.

"On a bad day I worry about the future, the money aspect of it, the fact that I'm getting older and I'm tired by the physical caring - what would happen if I couldn't do it?"

Sometimes I get very tired. There is no available respite care for Sam in this city. Apart from me, Rose, at 14, is Sam's principal carer. I have total trust in her and she can do all that is required to care for Sam. This means I can go to an appointment and leave him with her. It's sad that even when she is older she can't ever be paid as a carer because she lives in the house. Soon she will want a part-time job, and I can't pay her for her care of Sam.

I go to our Down Support Group and it's great to share our concerns, have a laugh and support each other. Our group has widened to welcome other parents with children with severe impairments, so I am among others who understand our day-to-day reality, and it helps.

Fiona at 17 is beginning to explore her independence and has a part-time job. Some of her money she uses to buy the things other families provide, like clothing and make-up and money for outings. Luckily our teenage daughters are not the demanding type. Their friends come to the house a lot, we always have kids staying over. The girls are brilliant; they kind of understand there is no space in our family for teenage tantrums. I do make sure they get to do their own things and not resent their Dad and Sam's disabilities. Whenever Darren can look after Sam I use my time with the girls.

"We are a day-by-day family. We can't plan a day ahead. We wake up and see how everyone's health is and then adapt accordingly."

It's hard to get Darren's and Sam's health together at the same time. As a family very rarely can all five of us go out together.

We shifted house about four years ago and in between houses we had our first and only holiday. We went away for three days together. There is no money for a holiday or for frivolous things.

Sadly our family issues often revolve around finances and I worry about how this will affect our girls' future. We live on benefits - an Invalid Benefit, a Disability Allowance and a Child Disability Allowance. Money is very tight. Our big investment is our house on a bit of land. It's a good place to live, but I worry about the mortgage payments. We own a van with a wheelchair hoist but it is so costly to run.

We spend a lot of time and money travelling into a major hospital for specialist treatment for Sam. It's a three-hour drive and we are doing three to six trips a year. The trips cost. Although we get 20 cents a kilometre, there is parking for the van, meal expenses etc. I stay with Sam in hospital and do all his individualised care. It's hard as there are no beds, no meals. At our local hospital, if I stay over they manage to give me meals, and it means I can cope better.

We live with the fact that we don't know how long Sam will be with us. When he was about two they said he would be lucky to live for five years. His condition is not operable. Sam is a real cool kid who manages to tolerate all the medical procedures. He is very computer literate and a fun-loving kid.

It's hard for Darren. It's a male thing to think you should be providing for your family, and being the strong one. He feels he can't do some of the 'man's role' and there are some male pride and self-worth issues he has to resolve for himself. In the bad times - when he is hospitalised or can't even move across the bed - it's tough. On the good days he has contact with good friends, and belongs to the local Lions club.

Our oldest daughter Fiona is really artistic. Her art teacher has suggested she should go to Elam Art School. I worry that we can't afford to support her study and she will limit her career options because we can't help her financially. She understands what it's like to live with little money and has a fear of debt. She deserves her chance to achieve.