So much has happened but it still feels so weird being back. Its great to have family and friends around again which has been a great help to us in the current situation.
Today we got to leave Crumlin for a few hours so we were able to bring Gavin home. This was the first time all 5 of us have been under the same roof in a very long time…Being in the same room and having dinner together was just amazing. The things we have all taken for granted before now all seem such a luxury and just make you realise how precious all these moments are.
Long days and nights in hospital have really taken it toll on us for the first time in nearly 3 years since Gavin was diagnosed.. we are wrecked. Sleep or lack of it really is a form of torture. The normal routine at the moment is one of us stays with Gavin every night, a couple of feet away from his bed. As many other parents will know that have had to spend time in hospital is that you just don't sleep. Between the BEEPS of the IV Monitors or nurses checking your child you have to be semi alert in case your child needs you. Also the sleeping arrangements change from ward to ward. We have a lazy boy chair which is luxury compared to what some other rooms and wards have. Some parents sleep on the floor with a so called 'mattress' (which is about 3" off the ground) or in a chair beside their child. But to be honest if I had to stand in the corner on one leg I would do it just to be beside Gavin. Steve Jobs will never know how much he has made people lives easier:) thank god for iPads and Netflix thats all I say…
So we rotate every other night to go home to our house and have a good night sleep in a bed and spend time with Conor and Lucy and my god is that good….I'd say it takes me less than 1 minute to be fully asleep once my head hits the pillow.
I read something a while ago that said you can never catch up on lost sleep no matter how long you sleep for when you can, I really believe that now…
But if you wake during the night it is hard to get back again. You head plays havoc with you, well mine certainly does. No matter how much you try and re focus on "happy thoughts" the bad ones still seem to win over.
Last week 2 children who were patients in St. John's Ward lost their battle with Cancer. One was 14 and the other was just 6 years old. I also lost my uncle to cancer last week so overall you could say that it was a bad week.
Cancer effects us all, nobody is immune to it, no family has not had someone either treated or lost to it.
It still baffles me every day the amount of money spent on research worldwide and their is still no cure.
Are we getting closer I really hope so…
So tonight I sit here, back writing the blog again, pondering on the last few weeks and months. Gavin is happy watching some movies, what time he will sleep or I will sleep is anyones guess, but whenever I will close my eyes I know that I am thankful for a great day today with my family and pray Gavin, Conor Lucy & Jayne will sleep well tonight and whatever tomorrows challenges brings we will face them together, as a family…and as a team.
As comedian Clive Allen always said 'Goodnight, and may your God go with you'