If you're happy and you know it clap your hands!

My son started doing this at the weekend after months of singing the song to him and demonstrating how to clap your hands as in my version, I can't turn my palms to clap normally so I clap the front of my hand with the other. Guess what, so does he! After observing other babies, I realise they know how to clap the "right" way and he claps the bonkers ways of his parents, bless him! Still he will learn the "normal way" which is far more sensible but not quite as funny.

So why have I not blogged for ages? Well because my husband and I are so exhausted we have been lining up for the sink to be sick in due to taking a lot of painkillers and other medication to get us through a busy time. I absolutely adore my friends, they keep us going but they also have no idea of how tired we get. The fact we have been up since 5am and with joints that are mostly broken,fractured, deformed and all needing urgent surgery, trying to smile for friends, make cups of tea, wash dishes and sort our child needs, driving every one every where, playing games with them and with our son etc etc. It does not register that perhaps this is exhausting stuff. I should think every parent feels exhaustion when juggling the art of entertaining friends who have no understanding of child rearing and who are expecting you to still be footloose and fancy free and all things to every one as well as being a parent. However we also have huge amounts of pain and mobility limitations to contend with, what takes one parent ,one minuet to do, such as changing their baby,takes us 10 mins,leaving us in pain and our poor son fed up from being mucked about with for so long. Every activity that is just a bit of time from a well parents day is hours from ours and a lot more taking of morphine and steroids to kill the exhaustion and pain for a little longer.

 I drove friends to Bristol and back again on Saturday to see a fab show "We will rock you". My husband drove on Monday to Bristol and back again because friends wanted us to all hang out and shop together, which was lovely and then on Tuesday I drove us to Bristol for my hospital appointment, then to IKEA in Bristol and then my husband drove us all back. Our son was perfect throughout it all, he never gets upset when we are out.When we went shopping on Monday he loved looking at every thing and even IKEA and Southmead Hospital held its individual fascinations for him.

I need my ankle replacing, they need to find a company prepared to design an ankle joint small enough for me, apparently joints come in standard sizes and they don't go as small as my paediatric size. However someone made me a perfect ankle for my right side and so I don't see why they can't just do the same for the left. So I am on the waiting list. I am dreading it not for myself, surgery is my culture, I have never known a life without it every year so it is no different to someone feeling annoyed they have a paper cut. I feel for my husband and my son. I hate being useless, I can not seriously sit in a plaster cast on my foot watching my ill husband care for my son alone so I shall be finding out a whole new set of "how to with baby" instructions to put on here. I shall not sit back and let him do it all, otherwise we will be having to sync diaries for each others required surgery and more concerning our son will end up spending too much time around hospitals, something I want my son to stay very firmly away from having had my childhood around the darn places.

I have previous knowledge of ankle replacements from the right ankle having been done, I can not use crutches during non weight bearing weeks as my shoulders and elbows will end up needing to be replaced if I put weight through them. So I am going to place a wheelchair upstairs and one downstairs so I can scoot around both parts of the house using my good leg to move me about.No reason why my son can't sit on my lap still and I am sure both he and I will adapt.

I know primarily I wanted this blog to help other disabled parents where a huge gap exists. However equally, unless disabled parents talk of the realities and make it normal to all then the gap will continue. Life is not awful, in fact life is very happy most of the time.Both the husband and I are in pain and we need day time naps like old biddies do, we stick our "Pain Pods" on, stick pain killers in our mouths,inject our Anti TNF medication and get on with our days, no more than brushing teeth is to every one, its a job that has to be sorted and not really talked about.

 I do get exhausted trying to come across as normal to every one outside of my family unit.However, equally, I love the fact my friends don't think of me as "poor sick Carrie". I like the fact they feel they can say "oh you boring old person for going to bed at 11pm". That is normal. I love the fact my son claps his hands the wrong way with a huge smile,feeling so proud he is clapping his hands and not giving a darn that he isn't doing it the "right" way or the same way as every one else.

So lets all take a leaf from the book of baby Christopher and clap our hands my weird way, feels good doing something different doesn't it :oD

x