I'm a bit stuck, words-wise - it's been an incredibly stressful week.
L has been settling in to his new school - it was never going to be an instant thing, but we're getting there I think. The school are a million times better at communication than his previous one and have an understanding of sensory processing issues, which is a big step forward. Also, they don't appear to threaten parents who write about their school experiences on the internet with the wrath of the County Council in vague and portentous terms, so that's also an one hundred percent improvement.
The Social Services OT has visited to fit N's sleep system and discuss ceiling hoists in her bedroom and the bathroom. The sleep system needs tweaks - I was up three times turning her last night, but I think we will get there eventually, it's just a matter of fine-tuning. As far as the ceiling hoists go, it depends on the joists. There's a man coming to look.
The same OT has put the stop on N going riding and swimming from school. This is because they say that she can no longer be lifted in to a normal car seat - because she weighs more than fifteen kilos - and is not able to safely transfer herself from her chair to a car with the help of an adult - although we tried it during half term and it worked okay. One of her concerns was that N would get wet or cold doing it like that during the winter. This leaves school in the position of not having budget to hire a wheelchair accessible vehicle to take her. They are going back to the county council to try for more funding, on the grounds that if N was at the local special school, she would get a wodge more cash allocated to her than she does at the moment; and that could be used for the transport costs. She needs the hydro and riding to help keep her mobile.
We are still going to and fro with Social Services regarding overnight respite. They are now saying that the horrific meeting we had was only the beginning of the review process, not the review itself. Which begs the question 'if that was the case, why was our request for additional support turned down out of hand at the end of the meeting?'. But still. We have been taken on by an Advocacy service and I am just handing it over to them. Any future meetings will be with our Advocate involved. I am cc'ing copies of correspondence to both him and to our local MP. So far Social Services have responded to an enquiry from our MP with a letter that basically says 'because these people suffer from depression they are mental and they need to pull themselves together and spend more time with their children rather than be allocated more support'. No-one has actually bothered to reply directly to me about anything I've written; presumably because I am mental and therefore it's okay to write to my MP about me, but I'm not worth communicating with directly.
After all that, N's physio texted to say they want to start serial casting on Monday. This means a couple of weeks of discomfort for N, but in the long run, a better foot position and easier movement. And today I ended up literally in tears on the phone to the nappy nurse because the re-ordering process is so tortuous. Oh, and the consultant wants a sleep study done now-ish, to determine whether we need a SATS alarm at home for night-time.
There are several things in the positive column.
We had a really nice Halloween party for twenty two six and seven year olds on Sunday, with bobbing for apples, face painting, graveyard cake with jelly-baby corpses, a treasure hunt and trampolining.
We have been given charity funding for a spare bed for N's room, so that when we sort out overnight care for her, there is somewhere for the carer to sleep. I don't want her room to turn in to a hospital before it's absolutely necessary and wanted a 'day bed' set-up that her dolls houses could live on when it wasn't being used. And because of the kindness and perseverance of one particular professional and her contacts with local charities, that has happened.
We are relying a lot at the moment on kindness, both of professionals and friends old and new. We have a really good set of people in our life, although some of the older friends are spread out all over the country. We are having a really shitty time, with lots of stuff to sort out - although it's moving forward, it feels really overwhelming.
I have taken on board a new motto, courtesy of Hannibal and his Alpine elephants: "Aut viam inveniam aut faciam" - I will either find a way or make one. There is a way through all of this - through the tortuous practicalities of ordering your quarterly nappy delivery a month before you need them and finding they take two months to arrive; of being told that you are not deserving of more respite because you suffer from depression and should just spend more time with your children; through the broken nights and the paperwork and the phone calls and the appointments.
And there is also a way to be found or to be made through the emotional turmoil and the exhaustion and sheer distress of watching N become weaker as she grows. Around the alpine feelings of guilt because I cannot lift her from the ground any more to hold her without hurting myself; the tiptoeing around L's questions about why N isn't walking or talking, trying to answer truthfully but without giving him nightmares; fitting in enough attention to our marriage so that it doesn't shrivel and die; curling around rocky outcrops of guilt, exhaustion and blank-eyed terror about the future.
We have no elephants in our Alps. But we do have friends. From those who give us a quick wave when passing in the car or on the internet; the people who bring us vegetables and meals to reheat or invite us round to eat; those who take Leo out for an afternoon when they take their own children to the cinema; to the group of wonderful, wonderful people who have formed a Hundred Club to try and help us pay for some overnight respite care.
What is happening to us is unbearable, all the more so because we have no choice but to bear it. And the kindness of friends and of strangers is making is easier to carry.
So thank you.