I've been quiet because I have had such a lot on. I've felt overwhelmed by all the appointments that suddenly became due once the New Year got underway. Paediatric consultant, advocate, social services, OT to look at beds and hoists, chap to look at the joists and assess for the suitability of a ceiling hoist, OT to look at bathroom changes, physio, speech and language, weekly appointment for casting N's feet, chaps to put some raised beds in to the garden for N to plant stuff in when spring gets here, chats with the GP, school, the counselling support service, the dietician; community nurses asked for a SATS machine loan for Ma whilst we're away, bloods being taken and MRIs being arranged for further tests, genetics spoken to, the Family Fund spoken to about a family holiday, the quarterly nappy order changed and triggered; and a school uniform grant arranged.
It between it all we have been fielding solicitor interaction to try and arrange for the children to see their grandparents at half term, move the family court date so that it doesn't clash with hip x-rays in Bristol; and trying to give a modicum of support to friends who have lost a close friend of theirs. Oh and I've been trying to get the incubator loaded and the hatching season under-way to get the business plunged in to the busy/profitable season.
A couple of weeks ago things came to a head and we were both so tired we had to ask for help. An experienced-with-special-kids friend came to stay for four nights and slept in with N, then we had our regular carer come in for one night; and this week the children have gone to Ma and Sister Natalie whilst B and I retreat to Wales to sleep. We are currently sat in Caffe Vista in Tenby, sampling their most excellent gluten free brownies and chamomile tea and wifi.
That's nearly two weeks of night-time support and we are still knackered. I'm torn between wanting to go back and plunge back in to family life - B is taking the children to Peppa Pig World this weekend, god-of-sausages-protect him - and wanting to run away and not deal with any of it.
This is not the life I would have chosen, but it is the life that I have.
Social services and the Paediatric consultant are, finally, finally, finally, going to try to persuade the Health Board to put some overnight respite in place for us. Ma and Sister Natalie are not really able to cope. It is only because B and I are literally at breaking point that we have gone ahead with this time away. I don't known if we will be able to do it again. The Compass Team have lent Ma a SATS alarm for the week so that she doesn't feel she has to get up every hour to check on N in the night, which is what she ended up doing last time she stayed with her. We are reaching the point that N isn't going to be able to stay anywhere that doesn't have hoisting capability because she now weighs between seventeen and eighteen kilos and is too big to safely lift. This also makes taking her out and about difficult because very few cafes and shops have disabled toilets with adult changing beds, let alone a hoist.
This makes me angry.
Everything makes me angry at the moment. I feel like I am filled with this immense electrical charge that is waiting to discharge with a huge crack. And when it cracks, when I crack, I am scared that I won't be able to put myself back together again. I cried properly this morning for the first time for months. I cried because Ma told me that I needed to spend more time with L, helping him with his homework.
I feel like I am failing everyone, but mostly, I feel like I am failing L. He deserves the normal things in life. He deserves to have a mother who helps him with his spellings. Instead he has a mother who spends all her waking time on the phone or emailing people about his sister, or caring for his sister. And the rest of her time flat on her back in bed because she's run out of steam. (Oh, did I mention that the fibromyalgia is worse in cold weather, when you are under stress?)
Anyway. Among all of this I want to give a nod to the concept of 'family of choice'. Your real family may have serious, serious limitations - god knows ours does - but in place of them, or as an addition to them, if you are really lucky, is your Family Of Choice. The friends that you choose to invite in to your life that are as close as, or closer than, your blood family. The people you can ring up or text after a month of radio silence and rant at down the phone. The people you give keys to your house to. The people who you are comfortable having walk in without knocking, whether you have pants on or not. The people you are happy leaving your kids with without any instructions or warnings. The people who hold you, physically or emotionally, who give you words or silence or freezer-meals when you need them and who you give those all back to in turn.
It's our family of choice that's keeping us going at the moment - giving support to various people as well as receiving it. Seeing other people forge through their lives one step at a time, seeing how desperately hard it is for them and how they are doing it with grace and with dignity somehow makes it easier for me to do the same.
I think it's the Anglo Saxons that saw their spiritual world as a web - everyone connected to everyone else, somehow. I am at the centre of my web. My friends are at the centre of theirs. All our webs overlap. You can pull and stretch the web but you can't break it because all the interlocking threads that make it up are flexible and keep it strong.
That's what keeps it knitted together and holds us all in place when we feel like we are falling.
We give what we can and we take what we need. We give love and we accept love.
That, to me, is what family of choice is all about.