From: Gordon (Giraffe)
Date: 17 Jul 2006
Time: 01:27:58 +0100
Remote Name: 172.216.247.149
Just when you all thought that you were going to get some peace,I pop up and bore you all to death again. I have found it helpful in the past to hear of peoples backgrounds in JHD,I have heard many tragic stories,many that go on and on,the words HD ringing over and over again.I suppose we are 'lucky' in a way,we only walk this road once,so many people have walked it over and over again. I wont start at the beginning of my life,that would be far too boring,I will start it from when I met Michaels mum. I met Caroline in 1989,she was 18 and I was 25.She was a slim blonde with a sense of humour,she made all the moves (I think she must have had a sight problem!).She also had a young boy,Michael,he was 1 year old and also very blonde and cute.I fell in love with the both of them and before long we had moved in with each other. Caroline and Michaels father split before he was born,he had never seen Michael and never wanted to,he thought that the kid was not his.Something that proved to be wrong later on. I was settled in a pretty secure job,I was managing a bar in Ayr and Caroline,Michael and I were getting on well.Caroline fell pregnant again and I was overjoyed,I was going to be a father! (Absolutely no offence to Michael) Caroline had a terrible pregnancy,she was in and out of hospital many times,Kirsty was impatient,she wanted out!Unfortunately Carolines mother had a heart attack when she was with her out shopping,she died immediately.To add insult to injury,on the day of Carolines mothers funeral her grandmother also died.This sent Caroline back into labour and this time there was no stopping Kirsty.She was born 7 weeks early and weighed 4lbs 8oz,she was gorgeous.They immediately took her to intensive care,just to keep an eye on her. The day after Kirsty was born I was in the laundrette,I was running behind and I thought that I was going to be late for work.I called the Hotel to tell them that I might be 10 minutes or so late,they told me that a taxi was waiting at my door to take me to the hospital,Kirsty was seriously ill.I dont know if anyone has experienced similar,but not knowing what was wrong was tearing me up inside,the taxi journey was one of the longest in my life.When I got to Irvine I met up with Caroline,she was distraught,Kirstys gullet had not formed properly,it was attached to her windpipe and anything she swallowed would go straight into her lungs.They were going to take her to Yorkhill Hospital in Glasgow,Caroline and I were not allowed to go with her,we had to get another taxi.When we got there Kirsty had not arrived yet,we went outside for a ciggy.One of the most horrifying sights I have ever seen was the ambulance arriving,lights flashing horns blaring,it was Kirsty. They operated that day to remove her gullet from her windpipe and attach it to her stomach,it was a 9 hour operation that had no guarantee of success.When she came out of theatre she was covered in wires and bandages,I couldnt even see her face,I remember counting the different machines that she was attached to and it was 9,all we could do was hope. Two days after the operation we got our door 'rattled' at 6 a.m,it was the police.We did not have a house phone at that time,it was the only way the hospital could get in touch with us.He told me that I had to call the hospital straight away.When I called I was told that Kirstys 1st operation had been unsuccesssful,her gullet had sprang free from her stomach,it the panic they had to fit a respirator,this had also punctured her lung.I had to give verbal permission over the phone for an emergency dual operation,I was told that Kirstys chances were very slim,I was not to build my hopes up. In the second operation they closed off her stomach and brought the gullet out of the side of her neck,they also put in a peg-tube for feeding.She spent the most of her 1st 3 years in hospital,it was operation after operation,it was all joined up but kept failing.I dont know if it was due to the pressures with Kirsty or whether we just fell out of love with each other but Caroline and I split when Kirsty was 5. I moved back down to Girvan,but kept in constant contact with Caroline and the kids,I got them whenever I could and went up to visit often.Caroline and I were still best friends,it was healthy as well for the kids.We had started to notice things going wrong for Michael,he wasnt quite like the other kids,I put it down Kirsty getting so much attention,unfortunately he missed out on a lot because of her situation.She tried for a long time to get answers from someone,no-one would listen. On August the 2nd 1999,I was on Turnberry golf course caddying (I always managed to make a buck somehow!),I had got to the half-way house when I was told that there was a phone call for me(No caddy ever gets phone calls,it is strictly forbidden.),I was told to stay where I was as the caddie master was coming to get me.When he arrived he found it hard to speak,he gave me a piece of paper.It said "Please call Kilmarnock police station immediately,ask for Sgt Wilson.Your wife and daughter have been involved in a R.T.A.".I called and spoke to the Sgt,he said that Kirsty has serious facial injuries and some stomach injuries,Caroline on the other hand had far more serious injuries,she may not survive. When I arrived at Crosshouse hospital I couldnt speak,I was so built up with emotion I thought I was going to explode.Kirsty was in theatre having surgery to put a metal plate in her jaw,Caroline was in intensive care.She had broken almost every bone including her neck,she also had a ripped liver,she was not expected to survive,I dont know how she did.I will not go into detail what those two brave kids had to go through,lets just say it was tough.Incidentally they were coming back from Yorkhill hospital after Kirsty had just been given the all clear.Caroline survived for 10 months then died the day before Kirstys 10th birthday(Now you know why I was kind of quiet on the Friday at the JHD weekend). In the meantime Michael was going from bad to worse,he was falling a lot and not doing well at school,the said it was a learning problem with autistic tendencies.I went to my G.P and told him about Michaels problems,he asked Michael to get down and lie on the floor then get back up.He struggled to do this,the doctor said that he needed to see a neurologist. We got an appointment in August with a neuro in Yorkhill Hospital (familiar place!).He seemed to recognise Michaels symptoms and asked me about family history,I had to ask to see him in private,Michael has never known that I am not his biological father.After sending Michael a walk I told the doc our situation.He asked me if I knew anything about his father.All I knew was that he came from round about Ayr and his surname,thats all.He came back about 30 minutes later and asked to see me in private.He said that Michaels father was on the Huntingtons register,I had no idea what he was on about.He said that the disease was terminal,there was no cure,that Michael would probably die within 10 years.My heart sank,why us,why now,couldnt God have given it to some lousy drug dealing low life?No he couldnt,he only gives it to special people. I think that I spent the first year after in shock,crying myself to sleep at night,feeling sorry for myself.I dont really know at what point I changed my views on JHD,I dont think that it suddenly happened,but I wanted to know more.One positive thing about the diagnosis was that we started to live every day,Michael wasnt dying,he was living.Every single second is very precious,we should make the most it. Since then we have moved on a lot in the illness,Michael cant do much anymore,if anything.He can laugh though,he can cuddle(as you all know) and he can still shine a bright light on our lives.I know that we have had hard times with the disease,but we have also built some great memories that we will never forget. We have been very fortunate to have met some amazing people through JHD,I would never have met them otherwise.Some fantastic people with there own story to tell,many have helped us on our journey,I try to give a little back. Well that is our story,I said "THAT IS OUR STORY!!!" WAKE UP!!! I would love to hear anyone else with their story to tell. Take good care everyone. Gordon. P.S I am sorry,but I no longer sell lucky white heather.lol