Not because I'm stressed at all but we have been so busy all summer that I need a week of doing nothing to get over it! We really have had a brilliant few weeks, Patrick has been stable with good days and bad days but we've come to expect that. Isaac on the whole has been an absolute pleasure to have around so I will be sad when he starts back at school next Tuesday. Since my last post just 2 weeks ago we really have packed loads in, with trips to the cinema, the fair, Serendipity Sam's, art exhibitions, Poole pottery, the beach, we really haven't stopped. I won't bore you with the details of everything we've been up to but I would like to highlight a couple of extra special days we've had.
As Patrick attends Naomi House hospice we were invited to an annual event put on by the Starlight Foundation at Popham airfield in Basingstoke. We didn't know too much about it and very nearly didn't go as the weather forecast for the day was rain, thank goodness we went, it was an amazing day, the sun shone all day and it was a day we'll never forget. Basically, Starlight took over the whole airfield for the day, lots of local pilots volunteered themselves and their planes and gave every family (about 500!) a short flight. We managed to be the first family to have a turn, me, Patrick and my Mum went in one plane with Isaac and Martin following in one behind us. Mum sat in front and was given control of the wheel, she even managed to land the pane without too many bumps, an experience I don't she'll ever forget. Patrick was happy to be in the air although I don't think he really realised, choosing just to sit happily on my lap and chew his hands! Besides the airplanes there were helicopters, we gave Isaac Patrick's helicopter ticket as he would appreciate it more and Mum had never been in one so they both went up together. There were also dozens of different cars from sports cars to classic cars that were there, driving all the kids around the field. They had loads of motorbikes, a London bus, a fire engine and little hovercraft to have a go on. It really was a great day out. Lunch was provided and there were free activities and games in a big marquee so not only did all the children get to experience all the free rides, they also came away with free gifts and toys. We all had a fab day, I don't think Isaac really appreciates how lucky he was to get to try all the things he did in one day, but we certainly do and we're very grateful for all the effort made by the organisers and volunteers.
Another good day we had last week was hosted by a charity we have only just found called 'SCARF' like Coping with Chaos they organise activities and day trips for families with disabled children. The good thing about SCARF is that they operate closer to home with activities in Lymington and New Milton and the New Forest so we'll be able to get more involved. It also means Martin and I both get to meet other parents locally which is really important. We went along to a Football training day last Wednesday where Isaac got to join in with a coaching session run by professional coaches from Bournemouth FC. We were made to feel really welcome by both the parents and other children and we're now looking forward to a trip to Blue Reef Aquarium with them on Monday.
Our battle to be re-housed is still ongoing with letters currently going backwards and forwards between us and the council as we try to establish why we can't get further up the list. We have asked them to clarify how their allocations policy adheres to the governments housing guidelines regarding vulnerable children and also how they encompass the children's act into their points system. So far they have told us that they do take vulnerable children into account and would give priority to a child if they didn't have access to a garden or if they live above the ground floor in a block of flats. Unfortunately their current points system doesn't allow them to give priority to severely disabled children like Patrick who cannot be given the equipment he needs to help him to reach his potential where we are currently living, makes for an interesting case I think so I'll keep you posted on that one.
I would like to draw your attention to another website we have recently found out about called Post Pals. Patrick is too young for me to register him on there yet, he has to be 2 but basically there are many children with serious or terminal conditions that you could make smile just by sending a little something in the post. Anyone with children will know how excited they can get if they receive something in the post, even a postcard. This site gives details of lots of children that you can write too, a great project if you have children yourself, Isaac has chosen to write to a little boy called Jack who was born on the same day as him, Jack is currently battling cancer so Isaac is going to send him some colouring and sticker books. A simple gesture that costs very little but can mean a lot.
I would also just like to give a mention to my friend Karen who's son Luke (see earlier posts) was yesterday taken back into hospital after having 28 fits over a 4 hr period. Luke is just a couple of months older than Patrick and is a gorgeous little boy so we're sending lots of prayers and keeping everything crossed that they can get his seizures under control quickly and find out what's caused the sudden change.
Anyway, that's it from me, I've got lots of photo's to upload so I'll do that in a separate post, for those who aren't on facebook yet there are loads of photo's of our summer holidays on there so get yourself signed up!