Each day brings us a little bit of joy and quite a lot of sadness, but as previously stated, we are so aware of what other people are going through, and with an inspirational little boy to care for on a daily basis and a lively little cherub in Jesse, we consider ourselves fortunate in so many ways.
Skye has a challenging existence, but the past two weeks have given him great delight as he greets every meal and snack with wholesale delight. Given the chance he would eat continually but Sally cleverly gives him targets in order to delay the gratification. To put it in context he has gained 3 kg in the past 2 weeks, almost a quarter of his original weight. Such is the effect of steroids, which he is taking at the moment.
Skye has been planning to take Jesse for a tour around Long Furlong Primary Pre-School, so that he can show him what to do and where all the secret hiding places are. On Wednesday he said that when he went to School, he was worried that his teachers "won't recognise my body", because he can't do what he used to be able to do with it. He can't run, can't walk, can't play with his friends as he used to, can't use his hands to do activities, can't head off to the loo when the need arises, and the list goes on.
We had a lovely couple of days together in Southbourne last week. Both Skye and Jesse loved being down on the beach. Skye helped Granny make loads of sand moulds including seas horses, crabs, cats and fish. For Jesse, it was all about jumping on castles, so we had to make him his own to jump on. Lovely afternoon in Christchurch, with Jesse making the most of the water play park, but as ever these moments are tinged with sadness.
It was just 2 weeks before Skye was diagnosed last August that we were in the same spot, with Skye and Jesse eating their candyfloss and having a ball running around enjoying the outdoors.
Not being able to run around with Skye, Jesse latched on to an older boy and followed him around, and it was hard to hold back the tears, for what could have been, and of course the sadness that Skye and Jesse will never again get the opportunity to run around together. These are difficult moments, which Skye deals with by demanding that Jesse do the things that he would like to do, but can’t. We counter that by trying to find new and exciting things for Skye to do on a daily basis, which makes for an incessantly busy life, but worth it!