Patience

This week has been an interesting one.  On Wednesday we had another MDT meeting with regard to Danny’s discharge.  I wanted to hope that we would finally be given an actual discharge date, I wanted to see the issues that we had raised addressed, I wanted to believe that something good would come out of this meeting and that true progress would be made.  The fact was that I knew that all of the above statements would be false regardless of how much we hoped, how much we preyed that this ordeal would finally have a finish date but somehow we knew that is would not happen.  To cut a long story short, the outcome of this meeting was that we are no closer to a final discharge date.  The most upsetting thing was that while Daniel was not being given a guaranteed discharge date we were told that this was “the best they could do” and we were expected to just accept this.

However, that said, this posting is not a bitching session nor is it any way meant to be a statement as to how crap this situation is.  What we I am here to say is that Danny is doing amazing, for those of you that did not see the BBC news piece yesterday take a look:

http://news.bbc.co.uk/1/hi/england/7845194.stm

When all of this first started back in April 2006 we never for once imagined that we could possible have got where we are today.  Back then Danny was only given a 10% chance of survival, which was completely devastating, to be told that your unborn child had such a small chance of making it is so hard to imagine and almost impossible to comprehend.  But this was what we were faced with, then we were given the choice of hoping for the best; termination or pioneering surgery.  It was a tough decision but we decided to go for surgery and with the phenomenal talent and vision of Professor Kypros Nicolaides Daniel was given his first and biggest chance of making it.  Still in spite of this work he was only given a 40-50% chance of making it so it would be down to Julie & Danny as to what happened from here onwards.  While extremely frustrating for Julie having to be laid up and taking it easy she did and it paid off.  On July 7th 2006 Danny be was born at 2:29am weighing in at just 5lbs.  From that day he started fighting, against illness and against the odds.  It has been an amazing journey and along the way we have met some amazing people who have helped to support us when we faltered, listen when we needed to talk, give a shoulder to cry on and just be there if we needed to sound off. 

In the early days we made friends with a group of people without whom we would have stood no chance of carrying this burden.  This was the Endermol team that were responsible for filming the documentary, Birthnight Live, that Daniel’s story was featured in.  To these folks, John & Angie and the others I would like to extend a massive thank you, you made those early days so much easier and you were always there.  There is also the nursing staff at the City Hospital who were fantastic, again they gave us a massive amount of support as well as being so attentive to Daniel.  While some will argue that they are paid to do this they went beyond simply doing their jobs, so a big thank you those people.  Then there is the staff at the QMC.  We may not have always had the smoothest ride at the Queens the staff have been incredibly supportive to us.  Without all of these people I do not believe that we would have managed to survive as a family and each and every person has played a part in getting Daniel where he is today.

For us, this has been the hardest time of our lives.  The strain that the last 2 and half years have put on us is in-describable, the fact is that when you watch TV shows you always see someone lash out at their partner when they are hurt/upset.  I never really believe that this was the way that it happened in real life but it does, it really does.  There were so many times that the emotions were running so high that they over flowed and sadly the person that gets hit is usually the closest person to you, not physically but emotionally.  This itself puts more strain on a relationship that is already at full stretch, is there a magical way of dealing with this?  The answer is no, when I was on the receiving end of this I had some incredible friends that I was able to talk to so that I was able to “vent off” which in turn meant I was able to get back to Julie.  When Jules calmed a little she would always apologise and we would be ok again, but without those two elements and a special bond it would not have been possible.  The best advice I can give to anyway in this situation is talk, and keep talking because it will help.  You partner/wife will lash out at you and it is your responsibility to deal with it because they are hurting, its nothing personal.

All of this has happened over the last couple of years and yes it has changed us in a major way.  We were once asked it we knew back then what we know now would we change what we did?  NO, categorically we would not as we have Danny and he is a real amazing little person.

What I would like to come from all of this is to be available to help others who may need support, whether it be advice, someone to talk to or whatever.  We were isolated in our experience but we had the support of someone amazing friends as well as friends we made along the way.  It would have been good to speak to others that had been through this situation, now that I can do.

For those that have taken the time to read all of this posting thank you,  those that have followed this from the start again thank you and to all our friends a most heartfelt thanks for everything.