I cannot believe it, but we are fresh into a new year.
I must admit, although part of me is delighted for the feeling of a new start, part of me is also nervous about the year ahead. I have made no resolutions as such, apart from to be a bit more organised and have more patience, but there are several things I would like for 2013:
* to not hear the word "intubate (meaning to insert a tube to ventilate)" in any tense other than past. Likewise, as nice as some of the consultants are, I do not want to have a conversation with any of the doctors from PICU. Although we didn't actually make it through the doors this year, we had a very narrow squeak this summer and had our lovely experienced consultant not been on call, would definitely have ended up there particularly as PICU had stated three days in a row they were keen to admit Wriggles and spent much of the early hours of the mornings by her bedside drawing blood gases and frowning.
*to gain some confidence and loose some anxiety. I will always worry, but would like to do so with it being a little less rehabilitating and wreaking havoc on other areas of life and health.
*to actually go on a summer holiday rather than spend it in hospital
*to overall, spend less time in hospital! (please, Wriggles)
*this one there is no time limit on, but I'm hopeful this is the year Wriggles will take her first independent steps. With the cerebral palsy and love of doing things at her own pace, I've come to accept that things happen within Wriggles' time-frame not anyone else's, but it doesn't stop me hoping. Less for me, more for her. She will be 3 this September and it is already becoming increasingly apparent that this gap in her development is affecting playing with her peers although to her credit this doesn't stop her from trying her best!
2013 also holds some changes we have to make, like moving as our contract on our little flat comes to an end. This makes me sad, as largely it has suited us down to the ground and has become our happy little sanctuary. Wriggles gets excited and starts flapping as we come down the road to it, and it just feels like home. Alas, the contract cannot be renewed so we had been start looking! Sometimes I feel ambivalent about our city, not least with the distance from family and impending cuts and then realise how much I have come to love and depend on it. It may all yet change, but I would like to think we are here for the long haul especially as we have made friends, both little and grown up. We might not see them every week, but the thought of starting afresh and abject loneliness fills me with dread.
2013 is also potentially the year Wriggles can/will start pre-school in some capacity. I know we have at least 9 months until this, but I feel very mixed about it. There are so many worries I have, both about her development, if she will flounder, and also regret on my part that I couldn't bring her on alone. It is like an internal battle. Rational-me accepts that there are wider, medical problems which complicate everything as well as appreciating that many, many children flourish in varied surroundings and within the company of their peers. Irrational-me feels a failure that so far I haven't made her eat, I haven't made her walk, I haven't made her speech beyond the handful of words and so it is being looked to that pre-school will bring these things on.
One of my biggest apprehensions is that this is likely to also be the year that our consultant is determined to try and make some progress with weaning off tube feeds and increasing oral feeds. Or should that be, actually instating any consistent oral feeds. At our last appointment, they acknowledged it would take years to sort out but that they would be disappointed if we couldn't crack on with some progress this year. Pessimistic as it sounds, but I suspect it will not be as simple as they think, ie. cutting tube feeds in the hope that hunger drives Wriggles to eat. If it was that simple, personally I doubt we would have the tube in the first place or use it to the capacity we do.
But enough gloom for now. Right now, I have a very funny, inquisitive, loony toddler who is madly keen on climbing things, shutting Hedgehog's nose in the drawer and programming my washing machine. Every second I am with her, I don't have time for regrets or fear. Happy new year!