Wonderful CHASE!

We have just returned from a wonderfully relaxing weekend at CHASE at Christopher's Hospice. It really is the most amazing place, you feel yourself relax as soon as you hit the car park and are never ready to come home at the end of your stay! We left on Friday afternoon and that was far from relaxing. The CHASE minibus came to get us with a volunteer as Paul is still, clearly, unable to drive us anywhere and I am unable. I picked Hope and Ellie up from school early as the bus had to be back by 3.00. When we got back, the bus was already there and I was far from packed and ready! Normally, you could just throw things in a bag and pop into town for anything critical and forgotton. However, Hickman line flushes and IV giving sets don't tend to be available on the highstreet. Hence, such rushed packing is HUGELY stressful. The poor volunteer driver was trying his very best to calm the situation though and we were soon on our way.






Paul and I were able to relax together in the tranquil sensory garden while the children played far enough away, on the trampoline and swings, to maintain the peace. This was the first "quality time" we have had together since Paul's accident on July 12th. William did pop over with his nurse from time to time. There is a lovely iron tree water feature that drips away as if in a light summer shower. William became fasinated with this.
When we were not in relaxing mode we had great fun in the pool together (Paul had to remain dry side but did take a few pictures) and William and Hope had great fun in the music corner. Ellie just loved having lots of baby dolls and pushchairs and fancy dress to hereselt in a big enough space to play lots of make believe and charm the nurses into joining in as only Ellie can. We did find time to make a paper bead necklace together in the art room. It's funny, for all their craving of William free "Mummy time", when they get the chance, both girls would much rather play with the nurses - after all, Mummy is always there isn't she, even if she is a bit busy. However, CHASE nurses have to be enjoyed when you can! I think this was particularly so this time as William has been home (give or take a couple of weeks here and there for line infections) for such a long time now and the girls aren't feeling so Mummy starved. I did offer to take them to Guildford Castle as it was free for British Heritage Day but who wants a castle when you can have baby dolls and a big garden and corridoors to push them around, lots of nurses to charm and a corner full of musical instruments and a magic piano that lights up to show you how to play the classics!





We have never been to Christopher's at a weekend before. We are usually the only family there, with the other children alone while parents take respite on holidays. It was really good to share it with other families. it was lovely to sit and eat meals together and share experiences. It was also interesting to see how each family made the place their own and got what they needed from it in different ways and without getting in the way of each other. Sometimes, for us, this is all about the girls and I having fun and bouncing on the trampoline etc. There was plenty of that this time but the main need was for Paul and I to have time together as there is precious little of that by the time I have done everything William and the girls need, fetched and carried for Paul, cooked meals, cleaned up...etc... The only thing I didn't get was a break from the TPN. This is so specialised that there are not yet enough staff trained to be able to do this when we are there.

Today was a slam back into reality as we kick of the busiest week so far for William. We had an opthamology appointment today which went every well, although we do need to get William in his glasses more (at the moment they are at the optician though as they were a casualty of the weekend!). Tomorrow we have Portage and Grant, out gastro nurse, to take out William's jej tube, Wednesday is the MRI and Friday clinic and a new jej tube. Thank goodness for Thursday!