Caring can be a wonderful experience, but it can also be isolating and lonely.  We hope you will find our stories about other New Zealand carers uplifting and inspiring, and help you feel part of the large community of 420,000+ carers!  Many of these stories are from past issues of Family Care magazine.  To request a subscription to our quarterly magazine, delivered directly to your home, phone (0800) 777 797, email sara@carers.net.nz, or read more at our Family Care section at the website!

The Manning Bunch

I recall becoming a father for the first time. I was lucky enough to experience this wonderful feeling another five times, all with the same mother.

Indeed, I am a lucky man. With the birth of our first three daughters, both Marie and I were well prepared for parenthood.

We wanted to raise our family with strong family bonds, good Christian values, and fierce independence from the state.

I recall the long hours of work when we bought our first home, of servicing three mortgages, of Marie being Mum and keeping things in the home ticking over.

I recall the birthday parties, and the many milestones parents love to celebrate with their children.

I remember walking Lisa to the dairy one day. We stopped on the way and examined a beautiful yellow daisy. Lisa was a sponge: the look of awe, of how wonderful this plant was. For me the magic was not the plant but the look on her face ... the sheer delight of learning. Ah, don't you just love those moments?

As a Dad, times like this were priceless, though having to work lots put strain on Marie.

I always feel guilty about this, but we knew of no other way of getting our own home.

In January 1987 we went on holiday to Auckland. Marie was hapu (pregnant) with child number four. Marie became seriously ill and was rushed to hospital with severe high blood pressure. At 1 a.m. I got a call to say I was to become a Dad again and had better get to the hospital. How can this be, I thought as I drove: Marie is only 27 weeks' gestation.

Not only was Marie very ill, baby was also, hence a decision to deliver this baby was made.

The decision was made with the understanding that Marie's life was the priority: do all you can to save both, but if it comes down to one or the other, then save my wife. Serious shit, you bet!

I was not prepared for the following months of hell; neither Marie nor I were prepared. To be honest, I do not believe that anyone can be.

Jessica was born weighing 800 grams, with an 80% chance of dying within her first 48 hours. Mother was ill and not conscious for these 48 hours. I had Clare, Lisa and Sarah with me. Housesitting in Auckland, our home in Levin seemed so far away!

I had to get the girls into accommodation at the hospital. I had to get out of this house ...

The owners came home early, unexpectedly. I told them about our situation, and lo and behold, they understood ... both their children had been born prematurely. We were being looked after, though I did not realise this at the time.

In the next two weeks we saw improvement in both Jessica's and Marie's wellbeing. This helped. This normalised the process for us.

The girls were fantastic. They missed Mum, of course, but gosh they helped their Dad hugely. Dad did a lot of growing up during those two weeks!

Appreciation comes to mind. Appreciation of friends, of family, and more than anything, appreciation of life. Recognition that all life is beautiful and sacred, and that with life there truly is hope. These are the things I was really starting to appreciate, and our girls.

We had to leave Jess behind at National Women's Hospital's neonatal unit. She was too tiny to move. We returned home minus our Jessica, but with everyone together, all was happy ... or so we thought. Yes this was tough, but it was necessary.

I was coping by taking one day at a time, I had no time to be tired or for self interest.

My focus was on Marie and the girls and also on Jessica, up there, not with us. We were flown to Auckland once a week, I recall. I hated flying.

I was not aware at the time, but Marie was grieving for the baby that had been taken away from her. The bonding was not complete. She as a mother did not feel complete. And hell, did I feel inadequate!

I was getting lots of questions from Marie about the birth process, about Jess. I tried to answer her questions and not show any frustration, to keep calm, stay supportive, keep loving this woman of mine.

To be honest, there were times when I was bloody useless. But we had promised each other to hang in there and be the best support we could to each other.

Even then we did not wish to become part of the 80% of marriages that break up due to raising a child with severe health problems and disabilities.

Jess came home Easter weekend 1987. At last we were complete as a family, it can only improve from here I thought ...

But within a week our lives were turned upside down by continual visits from professionals.

This became a living hell for us until we got some better coordination.

I continued to provide what assistance I could for Marie and the girls. Both Marie and I were conscious that we had three other children to care for, even though others seemed to be defining us as "Jessica's parents".

Luckily the girls were very understanding. They accepted that Jess was a child who needed many visits to hospital. Our children were huge in assisting Mum and Dad, huge in assisting each other. I look back with much pride at how well adjusted they have all turned out.

I was forced to take a month off work. I was not coping and asked for "stress leave".

I was a residential social worker, someone always in control. I had to admit not only to myself but to my employer that I could not cope. To say I was stuffed was an understatement.

Male pride is a hell of a thing to confront. It took many talks with Marie for me to work through it, a few walks in the bush to help clear the head and, most of all, some honest talking with myself. My time on stress leave was mainly spent helping Marie and talking when we could.

It was during this time that Marie and I accepted that we would need support to get through this. Reaching such understandings was helpful. We wished though to accept help on our terms ... control freaks, no, we just wanted to have some control in our lives.

With all this occurring we had another two children, both born without complications, both healthy ... a son, James, and Heather, our fifth daughter.

Jess fitted in as part of the family unit. When Mum and Dad were not around, Lisa was Mum number two, and still is! It was Jessica's choice: Lisa had no say!

Looking back, friendships have changed. To be honest, we have forged friendships with parents of disabled children, though we have friends where this is not the case.

Over the years we learned to cope. We became a really strong unit. I was always and still am awed by Marie's strength.

I wish to talk more regarding the 80% of marriages that break up due to the pressures of raising a child that has disabilities and complex needs. I hear too often that men walk, they find it too tough. Or are they not understood?

What should not be normal is the high rate of marriage break-up, what should not be normal is men walking. I can only imagine how tough it must be raising a child with one parent. It must be horrendous! So why do men walk?

Men, I believe, process pain and anguish similarly to women. But they express this pain and anguish in different ways.

I stress the point different, not wrong.

Men probably find it very hard to talk about their fears regarding their ill or disabled child; their thoughts and feelings are often kept within, as this is where they feel more comfortable.

Factor this against how a woman tends to express pain and anguish; it is often at the opposite end of how a male does it. This is different, not wrong.

We need to take time to talk to each other about our feelings, our pain, and our lost dreams. We need to take time to discover new dreams for our children. To find ways of enjoying this new journey we are on.

We need to feel safe to express our feelings without fear of being judged, without fear of recrimination from our partners.

This takes time, and respect based on mutual love for each other.

Yes it is tough, and we as couples need to make time for each other. We are the adults here; we need to make the correct decisions for our children. But what role modelling do we give our children when so many men walk?

In truth, at times Marie and I needed help from counsellors. This occurred separately, and for us it helped.

Men sometimes find support from other men, and small but intimate groups of support for men do exist if you look within your community.

Some groups naturally occur as a result of attending national conferences. I have attended the Parents of Vision Impaired annual conference for nearly 20 years.

Why? Well, those that attend find they get a fix like no other. I have found friendships with other men that I truly cherish.

We learn from each other, we can talk like I cannot talk with other men.

It is the natural bonding that occurs from a mutual "knowing" we fathers share.

There are many other support groups for men in our communities. Other men seek support through their sport and in other ways.

Some are comfortable with low level support groups. But mention counselling and most men run.

Yet a man talking to other men is often referred to as peer counselling; go figure! Male pride!

The journey has not been easy and requires the odd tune up! It is hard work raising and supporting a family of six.

But in all honesty, I wouldn't change a thing. As a man I have grown, grown in so many ways.



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