We’ve just come home from our second respite weekend as a family to the Children’s Hospice, Shooting Star Chase at Christopher’s. The deal is, Willow has her own room downstairs and we have family accommodation upstairs. The team look after Willow as much or as little as we want them to.
It was a great weekend, Chops had an absolute ball and we all got to spend fantastic quality time together, we were cooked delicious food all weekend from the lovely Fran and looked after by everyone. The team of staff go out of their way to help make your time there as easy and enjoyable as possible.
Willow, on the other hand, seemed to cotton on to what was going on regards being apart from us and barely slept the whole time, which meant she spent a lot of the time upset because she was so tired. By today she was getting used to her carer, who was wonderful with her, so perhaps more frequent visits are in order so she the surroundings aren’t so strange to her.
So, after being up with her for a few hours each each night, we are a pretty tired Mummy and Daddy but it was well worth it. No stress, no worry, no thinking about meds, just being together having fun. And fun we had!
We played in the soft play a lot, it was the thing Chops wanted to do when he woke up and when he was supposed to be going to sleep. We painted pictures, played lots of lego, made music together, spent time relaxing in the sensory room, we had pudding with every meal, we swam twice and I even had two piping hot baths with mountains of grown up bubbles!
Nightime is hard and we didn’t get it right again this time but it was better because although Willow was upset, we were with her. Mr T got Willow to sleep and into her bed then the team called up to us as soon as she woke, we really didn’t want Willow to be upset thinking we weren’t there. You see, when a child stays with other people and wakes in the night and wants their Mummy or Daddy, they can say they want Mummy or Daddy, or they can sign or gesture in some way, not that our kids have ever stayed away from us other than this and the previous respite weekend, but little Willow hasn’t got that privilege and we never want her to be crying for us and for us not to be there. Bless her, she sleeps a foot away from me at the most, she can smell us, it’s what she knows. That’s what happened last time because we hadn’t communicated our wish well enough and understandably the team were trying to let us have a good night sleep, but I couldn’t sleep thinking sge might be upset.
So this time we asked that we are called as soon as she makes a peep and one of us will go down and soothe her back to sleep. In reality, on the first night she was awake in my arms upset for several hours and likewise her Daddy’s arms on the second night, in the wee small hours, then we had to swap, they found us a bed and Willow and I cuddled up and after hours of upset with Daddy, she was snoring. Next time we will get closer to how it needs to be, that needs a lot of thought but we will get it right for all of us, we have to.
Tired? Yes. Happy? Yes. Chops is ready for a week at school after an amazing weekend of fun relaxation with his family that he’ll probably take memories of for life. He relaxes so much there, he can run and he can just be himself, a very cool little 4 year old. He was asleep by 7pm tonight, let me tell you that that NEVER happens. And Little Willow was not very far behind. And me? It’s just gone 9pm, we’ve watched the recorded Comic Relief Cakety Bakeoff and my eyes are closing. Mr T is filling the dishwasher after having set Willow’s food going in with her pump, business as usual.