When I was asked to write this article my reaction was "Why us, our experiences have been so different to others!"  However, as I thought back over the support meetings we have attended I realised that each and every one of us is different and our experiences, although often similar, also differ in many ways.

The word which so often comes to mind is 'waiting', that insubstantial word that is also one of the most frustrating we may ever meet.

Paul's life seems to have been one wait after another except for his birth, (34 years ago) when he was far too eager to enter the world and arrived weighing 2 pound 13 (and 3/4) oz!  In those days doctors reigned supreme and parents were made to feel very uncomfortable if they asked questions of any kind.  (Thank God things have changed!)  There were some parents, however, who still kept questioning and doctors who attempted to answer with evasion - if they had only said they did not know, life would have been much easier!  He had numerous hospitalisations but before each 'waiting' became a fact of life for us all.

We were told, when Paul was seven, that he belonged to the Noonan Syndrome but there was little if no information on it.  It was only in 1999 that we learnt of a support group in the USA and through them that the Syndrome was recognised in the year he was born.  Through their newsletters so many of his problems have now been understood.

In early 1998 Paul became extremely ill and even though we knew he had cirrhosis of the liver we did not realise how quickly things could go wrong.  He suddenly haemorrhaged and it was three days later that Ed Gane came into our lives.  He was 'banding' Paul when he haemorrhaged again, and it was only through Ed's skill and those of the Intensive Care Unit at Middlemore, that he survived the night and was transferred to Green Lane where he had a liver bypass.  We will never forget him looking at us after he came out of Intensive Care and saying "Thank God for Dr Gane!"

Our history of waiting began again later that year when Robin, Paul's father, was diagnosed with liver cancer.  Dr Gane told us that he would have between three and eighteen months with us.  He said that he would talk about his case with the liver team, but we knew even then what the answer would be.  I guess hope has always been a big part of our lives, and that 'waiting' was the hardest we have ever had to bear.  We were very lucky to have twenty-eight months with a man who showed us all what faith and persistence meant.

A year later Paul was again in trouble and had his second bypass.  Once again, this very game young man beat the odds.

We were naive enough then to think that at last our 'waiting' was over!  But later that year both Robin and Paul were admitted to Middlemore together.  Paul became extremely ill and very 'handicapped' - he appeared to have palsy and the only word he said was 'home'.  I was told that it was beyond their expertise and that he was to go home.  When I asked what the Gastro team said I was told that Dr Gane was in Australia - certainly not an answer to my question.  I insisted that the Gastro Registrar be called and he took one look at what was happening and disappeared to come back to say "Dr Gane says listen to the mother, she knows what is best."  The following day I was told that Robin would be coming home, Paul would die that night.  It was only then that I learnt that he had been given a sleeping pill two nights before and that this was the result.

My immediate reaction was that he was not going to die there and that they were to get an ambulance and send both father and son home - I left to prepare the way.  I can remember driving down the motorway and screaming my head off - something I think perhaps I should have done long before that.  I arrived home to a telephone call from Dr Gane to say that Paul was not going anywhere and that this could be reversed - meet him in the morning.  Robin was then stranded at Middlemore!!!  Before he was collected Paul was taken away for a scan and that was the last he heard of him.

By 10pm that night we had had no news and I telephoned the ward to be met with complete silence and then a very quiet, "Do you mean that no one has rung you?"  Why I replied "He is in Intensive Care, isn't he?"  I frankly do not know, but I was very quickly transferred to the unit.  There I spoke to an extremely reassuring doctor who assured me that he would be all right.  It was only next morning that we learnt that Paul had collapsed under the scan and only when I saw the shirt they had cut off him that I fully realised what had happened.

It was then that Dr Gane first spoke of transplant for Paul.  To be brutally honest we as a family did not think that he would ever be given that option because of his handicap with Noonans.  Needless to say it actually came as a big shock.  Dr Gane had said on the phone the night before that he would never restrict Paul from any medical treatment and I guess that was the clue that we all missed.

This was the most difficult 'waiting' period for us all as we still did not think that he would be accepted.  Seeing each specialist was a strain, particularly for Robin, but Paul shone through with his honesty.  He does not read, but when asked the time and day, promptly looked at his watch and gave the answers - a shrewd one he is.

When the YES came we had a family conference.  Dad, Mum, Paul and sister Erina.  We made a very firm decision that we were no longer going to let the 'waiting' word affect our lives, and we all stood by that, putting the beeper with the phone, and as I may have said to some, we spent more on petrol going back for it than we spent on going out.

The words I will never forget after Paul's transplant were those Ed said to me in Intensive Care when he quietly came up behind me and said "The miracle of all this is that Robin is here to see it."  I thank him sincerely for that.

Paul's year has not been easy as he has had very bad reactions to drugs and numerous other problems, and losing his Dad was far from easy, but I know that he has taught others, not only with the medical problems, but with his own brand of faith and perseverance.

As a secondary school teacher, I have always had great love and faith in the teenagers of this country and I have met that in the young people (and those a little more mature) who have been so marvellous to us all on 7B.  I am also so grateful to all those other professionals who have given of their skill and compassion, and I can truly say that I am delighted that we are not losing the elite of this country - they are gaining valuable experience overseas and coming back to teach their skills to our next generation.

WAITING is not easy - but nor is life - we know how lucky we are.