We have had a holiday. A proper family holiday.
We went to the hospice for four nights, then we spent six nights at the Finlake Holiday Park near Torbay, courtesy of the Torbay Holiday Helper Network. The hospice is always a much needed break and gives us time to sleep and spend time with the children that isn't just about making sure all of our basic needs are met.
The holiday was something else. I was dreading it in one way because of the change in routine - I was worried that N wouldn't sleep and that it would rain and we would be trapped in a damp static caravan with two cranky and overexcited children. However that wasn't what happened.
What happened was that the caravan was huge and heated and lovely with lots of toys and games and DVDs. There was a fully stocked fridge with vegetables and meat so that we didn't have to plan meals or shopping. There were sheets and towels and a fully equipped kitchen with a hand-blender so that we could blend food for N's tube. There was a big file of leaflets from local businesses that are part of the network that donate free entry or meals to families who are staying. There was a letter with contact information for other people like massage therapists who offer free sessions to guests. There was free entry to the swimming pool on site and half-price riding sessions for the children at the local stables.
It was amazing.
When we decided to take up the holiday offer, B and I were determined that the children would have a memorable time, regardless of our sleep levels and stress. However the fact that everything was just *laid on* for us and there was nothing to plan or struggle with made it wonderful for us as well. We were in desperate need of some time out of our routine and really miserable and feeling unsupported by both family and social services. The day-to-day interactions we had with the members of the THHN made up for some of that - truly the kindness of strangers who had no connection with us personally except a desire to help families like ours.
We have come back feeling as if we *do* matter, as if we *are* being heard and acknowledged and have simply been held a bit, just for these few days. It has made a big difference to how I am feeling about the things we have come back to - the usual grim grind of meetings, phone calls, appointments and letters.
But I'm not going to talk about those, in this post. I am going to talk about the good stuff.
We have decided to make a few further changes to the business, to consolidate the remainder of the birds here rather than down the road at Ma's. This will mean more time for us and less pressure to keep everyone else happy rather than pleasing ourselves.
We have a new helper arrive who is very pro-active and efficient at the outside work - she is currently putting compost on the garden. Having the vegetable garden bedded down properly for winter will mean that I don't have to dig it in the spring and can just get planting, which will a) be fun and b) mean that we will save money because we will have lots of our own food.
The children are both very settled at school. L was happily telling the hospice staff how much he liked it; massive relief. It turns out that his mild sensory issues are helped immensely by squishing him with a large gym ball for a few minutes - he is then much calmer for ten to fifteen minutes. It's amazing. And, obviously, consensual ... non-consensual squishing is bad ... he is very keen on having it done. He is also enjoying hanging from a chin-up bar in the doorway, which has the same calming effect. Once again, thanks go to the Integrated Therapies Team in Taunton for diagnosis and practical advice.
B and I have had a chat with the counsellor from the Compass Team this morning and chewed over the idea of trying to organise more frequent breaks for the two of us. I didn't realise how stressed and wound up I had become until I throttled back down a bit.
This morning I have woken up to the fuss about Jack Monroe's tweet re David Cameron using his disabled child to shut down debate. I think she is right. I think that his experience of having a child with complex needs is so very different to mine and those of families like mine. We are all different. Our children are different. Our needs are different. None of us can really speak for the others of us. We do not speak for him. How dare he speak for us?