Last Word

I finish work at 4pm on a Friday and I enjoy listening to Last Word on the way home. It always makes me think that I might like to be on it (in the very distant future). I'm not looking for fame or fortune and I think it's highly unlikely that I'm going to change the world but it would be nice to make a difference to a few lives so that your not being here anymore might be worthy of mention. That there was some kind of lasting impact of you having been here. Maybe beyond your own family. Let's hope I don't go too soon because I think I have some way to go!

The upsides to Wotsit potentially having German Measles

1) A sneaky afternoon blog (whilst Wotsit sleeps I hasten to add)
2) Peanut butter on toast for lunch
3) Avoiding one dull and not very relevant meeting

The downsides
1) It's cold in my house
2) I have a tonne of work to do today
3) He may actually have German measles (thankfully, he's pretty chirpy and symptoms to now have been almost non-existent so looks pretty mild)

PS - Wotsit didn't have German measles and the house soon warmed up - so turned out to be mostly upside!

The gist of it was...

I've not felt terribly happy. And not because Monkey's not here (I want him here but I can be happy whilst wanting him here). Just some kind of internal struggle with being a good Mum, being good at my job, husband's job being at risk, wanting more from life, pressure, pressure, pressure. All self generated. I think I was happier when Monkey was here. Don't get me wrong, life with a severely disabled child can be tricky, but I had a reasonably clear role. Haven't quite worked out what mine is/should be yet. Not great with ambiguity (or so my boss tells me).

Am in the last throes of putting together a photo book capturing much of last year. And on reflection (I know you don't take pictures of the miserable/mundane moments) have realised (better late than never) I am happy! Here's my little summary which is going on the front page:

Starting with Christmas 2008 at Pear Tree Cottage and finishing with Christmas 2009 in Pxxxx. With lots in between... in no particular order. Raising money for Keech Hospice Care dressed as Santa and dressed to impress at the Butterfly Ball. The arrival of Baby B in January. A year in which Pickle still loved his builder's helmet and Wotsit loved muslin squares. A fair bit of snow and a broken arm for Big B. Knoll House of course, with the Fxxxx & Fxxx tribe. Lots of parties. Lots of friends. Lots of days out. Picnics. A Christening. An impromptu visit from Grandma. Wotsit's 1st birthday and Pickle's 3rd. Axx turned 21 and Nxxxx was 40. A grown up weekend away in the New Forest. A lovely family getaway - farm holiday near Southwold with Grandma. The arrival of the chickens. Lots of fun with 'The Usual Suspects'. Walls knocked down. Walls put up. I returned to work. Father Christmas bought Pickle the oven gloves he'd hoped for. The boys grew up (and so did the girls). Happy days and someone missing xxx

So, my belated New Years Resolution is to remember to enjoy the moments whilst I'm in them.

Post MIA

I've just lost my last post. Sure I saw it saving its merryself. Not in draft, not there to be edited. I think it may lose something second time around but will have another go soon.

Disability awareness at 3

Pickle came home from nursery yesterday telling me about a boy who was sick in The Hut (his room at nursery) - fascinating to a 3 year old. I'm thinking 'great, hope there's not some kind of bug going around'. He went on to say that the little boy couldn't walk like Monkey and that he was disabled. All perfectly believable although I was worried that his imagination had taken over (the nursery room isn't that accessible and I hadn't seen any disabled children). When he said there was another little boy who was disabled, I really thought he was making it up (is that awful?).

Anyway, I asked the girls tonight and he is absolutely right so I am proud of my little boy's disability awareness.

Pickle and I went on to have a further chat when he referred to the boys with disabilities as babies. I asked if they were babies or big boys who couldn't walk. He decided that they were big boys who couldn't walk just like his big brother who was bigger than him so couldn't have been a baby. Good logic, Son.

It's behind you!

I realise it's not ideal to have to scare your children into giving you the best hug ever. However at the pantomime yesterday afternoon - half scared, half fascinated children clung to me and I loved every minute of it. Not sure if they were more scared of the baddie, the dragon or Grandad dressed as a very camp genie of the lamp!

Overcoming shyness

I am painfully shy. I find it incredibly hard to strike up a conversation with someone unless I know them really well (or it's virtual). It frustrates me a lot. As a child, particularly following a move of schools, I was considered stuck up. As an adult, it has stopped me making new friends (although I'm very happy with those I have!) and joining mother and baby groups. At the theatre the other evening, I know the American guy next to me at the theatre would have struck up a conversation but I avoided eye contact on every occassion. Yet I was really interested to learn more about him. I like knowing more about people, so what am I scared of? Looking silly, maybe unintelligent, saying too much (I can't really do small talk). I'm not sure really - probably all of these things. Actually, I think mostly it's that I'm worried that people won't like me.

Yesterday I agonised about speaking to someone. This was part shyness and part awkwardness. Their baby had recently died, 2 days old, completely unexpected. They were back in the office after some time off - it was the first time I had seen him since I'd heard the news. What's the right thing to do?

I was completely unproductive for the next hour (sorry boss) as I agonised about this. I know that grief is very personal. I know that one of the things that I found hard was that very few people spoke of Monkey or what had happened when I returned to work and that made things harder for me (whilst shy, I am also incredibly open). But this was a man... in the office. He might not want to get all emotional. I might make it awkward for him. He might just be trying to carry on, not wanting to dwell. Grief is very personal, whose to say what his preference might be. I weighed it up and decided that on balance the right thing to do was to put my shyness to one side and to acknowledge his loss, if there was an appropriate opportunity.

The perfect opportunity arose, the conversation went well. I think I may have helped a small bit. And I think it was the right thing to do.

My next conundrum. We had a brief chat and he asked me how long it took me to get back to 'normal'. I came up with an answer (which I'll share one day). The thing is I now have a much better answer which I want to share because I think it might be helpful but don't want to appear like this mad, bereaved stalker woman. Hmmm.

Hush Little Baby

Every night, following Pickle's bedtime story, he has 3 songs. This is his attempt at staying up. I know that, but I humour him and love it. We don't deviate - Hush Little Baby, Twinkle Twinkle Chocolate Bar and Twinkle Twinkle Little Star. (I can't sing by the way).

Some nights I can't quite make it through Hush Little Baby without crying (Pickle either doesn't notice or doesn't mind!). I used to sing it to Monkey when he couldn't sleep. It started when a friend bought him a musical butterfly when he was born - pull it's tail (I know butterflies don't have tails but this one did) and it would play Hush Little Baby. The butterfly came on holiday with us and to hospital stays. Monkey seemed to like the music. I didn't know the words so I looked them up. Then, when he was a bit bigger, it became something I'd sing to comfort him. He'd go through phases - I guess based on how comfortable he was feeling. Quite often, he'd wait until I'd just sat down to eat my dinner before starting to wail. I used to sing Hush Little Baby followed by I know an Old Lady who Swallowed a Fly (strange combination) and if he hadn't dropped off, I'd start again. I have no idea how many times I have sung these songs. It seemed fitting to play Hush Little Baby at Monkey's funeral - a last lullaby.

I can't remember how I came to start singing it for Pickle but I do.

Today, after an exhausting day for Pickle, he lies still whilst I sing and snuggles in, sometimes his little arm comes out, reaches around my neck and pulls me in. (Normally, he wriggles and squirms and plays me up a bit until the last minute). The very last minute when I shut his door he calls out sleepily 'I love you Mum' and I melt...

Coming Home

I remember phoning my friend to say that I wouldn't be able to make it to the work Christmas Party as Monkey was coming home (can't actually belive I was contemplating going), so he must have come home early December 2004. We'd stayed at the hospital the night before in the hottest room ever where Monkey had slept with us - to check we could cope. We didn't get a lot of sleep that night - partly becuase we were so hot, excited and scared and (oh, isn't this the reality of a natural birth) I was in agony with piles! When we finally fell asleep, and then woke up, we were so worried that Monkey wasn't breathing as he was so quiet - but we had all survived the night and we were finally discharged.

We knew at this stage that it was likely he had some brain damage although the initial brain scan hadn't looked too bad - we had been prepared that it was highly likely that he might have some difficulties but had no real idea what this would mean. It's impossible to know - I realise that now - but that was a difficult concept to grasp initially.

Monkey had never mastered the feeding so was discharged with an NG tube. And we had our first professional, Belinda - a lovely, slightly batty but all the better for it, community nurse who checked up on us and showed us how to repass the tube if it came out. It did come out a couple of weeks later but we didn't repass it. We told Monkey he'd have to manage without it - and he did. It was not easy - for either of us. I often dreaded feeding time but I had nothing else to do - I was on maternity leave to be with my son and we bonded over those hour long feeds.

I can't remember the sequence of events but I remember the appointment to review Monkey's second MRI which showed the extent of the damage to all areas of his brain. The doctor seemed sadder than I think we were. I think because she knew a lot more about what was to follow than we did. We were given a diagnosis of severe spastic quadraplegia and my husband asked about life expectancy - not a question I was expecting him to ask and not something I'd given any thought to so the answer came as something of a surprise. Based on that, we thought we'd lose him in his teens. We then drove to Nottingham and bought a sofa - well what are you supposed to do?

Unconnected, reasonably random thoughts

So here's what's in my mind at the moment:

1) New Year's Eve was lovely - highlight was seeing the New Year in with a hot chocolate - I know how to party!
2) I really would like to do something with my life that is a little more worthwhile (referring to my day job rather than the upbringing of the boys).
3) I'd love to sleep the whole night through with no interruptions (last night it was Pickle, Wotsit & Husband).
4) Wotsit really is becoming a Wotsit. Think I may have experienced his first tantrum yesterday - wow! He is both a daredevil and a terror.
5) Managed a short run yesterday morning (reasonably treacherous given the ice). Stopped at the church yard and a had a few tears at Monkey's plaque - another year/every year without you.
6) Must buy my husband's birthday present (potato ricer, conical sieve and a cake stand - what more could a man want?).
7) Rupert Penryn-Jones is lovely, even in a dress and The Priory was a fab play.

Is it any wonder I feel quite tired?