A side note: Today was the biggest day for us in so many ways. It is the day I truly wish I had been there. Tim will fill you in later on the amazing details of the people they met and the things we learnt. It is so exciting and life changing for us. We knew it would be the hardest day for Louis. We have had so many specialist visits in the last few years and we never get news we want to hear, so we have a number of stress responses. You can do as much breathe in peace and tranquility as you like, nothing prepares you for them. On good days we come out saying Well, that was interesting…mutter to the bad days */#*^! The specialists are always the most amazing, delightful people and we adore them, but often it is a really hard information to process well, both for ourselves and for our children. We are always trying to learn how to do things better so I think next time we will put a basketball in Louis hand, demand they have a hoop in the corner of the clinic and let him go beat somebody at something. That will put the smile back on his face. However, today that is not the case. This visit was so different in that we absolutely loved everything they told us. (NB We love the way our specialist deliver bad news in Auckland to…they are really good at it :-)) The medical team in Boston are world leaders and it was an absolute privilege for them to be there. Just another way that this is... The Trip of a Lifetime. You may have to wait to hear from Tim ( They are at the Bruins Ice Hockey game) Talk about celebrity! Thank you in every language xx
Posted on: Tue, 04 Mar 2014 23:09:17 +0000
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