Putting a Smile on His Face

I remember my dad telling me that if my grandma needed cheering up (or buttering up) a new hat was the order of the day.  I don't think she ever went out without a hat; she may have influenced me in many ways, but I wasn't built for hats, the only hat that I have worn willingly is a riding hat! A hat would be the very last thing to cheer me up!

There are many things that put a smile on Robbie's face and shoes are close to the top of the list. He really should be grinning like a Cheshire cat because by my calculations he has six new pairs this year! Four pairs of Dr Martens and two pairs of Converse. His latest pair were delivered yesterday, a pair of low Converse All Star's. The colour is called 'Waterfall' which is very close to turquoise. They were a real bargain from the Office sale and they are intended to replace his light blue pair which have seen better days. He had already bought a pair to replace his red patterned Converse that are falling apart.  

The only bit that he hasn't got around to is throwing the old ones away. I reminded him of this and he agreed that he would throw them away. I was lulled into a false sense of security until he said "but I am going to keep the material ....". I thought he was joking at first, but he was absolutely serious. He plans to cut out and keep the material from his smelly old shoes! OK I admit that they are not smelly, but seriously why on earth would he want to save bits of old shoe! I blame his railway friends for putting crackpot ideas into his head, they have some very weird habits. He told me the other day about someone who collects bits of moquette from old train seats, now that really is weird, it makes Robbie sound relatively normal!      

Time For Action

Things tend to creep up on you without you taking much notice until one day it hits you like a thunderbolt that something is badly wrong and things can't go on the way they are. That is how it has been with Robbie's pain, it has always been there and it has always worried me, but Robbie hates it when anyone makes a fuss. so I have got used to noticing a lot but not making a big deal of it. None of us see ourselves as others see us but when Robbie looks in the mirror he sees Superman staring back! Thankfully it doesn't involve him wearing a skin tight outfit with with his 'smalls' over his tights - but he thinks that he has to cope with everything without complaining and without asking for help. This is especially true when it comes to coping with the pain and problems caused by spina bifida. He doesn't like to dwell on it, as far as he is concerned what can't be cured must be endured. The problem is that this approach only works while the pain is manageable, but it had become unmanageable and just coping with everyday life had become an ordeal.


Getting Robbie to see the doctor was easier said than done, but I wasn't ready to take no for an answer and he was in so much pain that he knew he couldn't go on like that. So on Friday morning Robbie and I went to the surgery to explain the situation to the doctor. His company allow casual dress on Fridays but as we walked across the car park to the surgery door I wondered why he had chosen that day to wear see through Converse with vivid blue, yellow and pink socks, jeans and a Star Wars t-shirt. The doctor was lovely, she listened and asked questions and she could see that he couldn't cope with the pain. She wanted to see the range of movement he had in his legs and I had to suppress a smile when she got him to lay on the table and had him waving his legs around like a dying fly. She could hardly miss his psychedelic feet and the look on her face was priceless. 


My hidden smile was replaced by a broad grin when the doctor said that she thought that it would be possible to manage the pain. She explained that the pain will not go away but there are several types of medication that can dampen the pain messages coming from the nerves to the brain. She has prescribed medication with a view to him taking it long term. It will take up to six weeks before he will experience the full benefit, and it will have some side effects, but it was such a relief to have a long term plan to deal with the pain. Robbie's sense of relief was even greater than mine, he even thanked me for making him go to see the doctor. There are no quick fixes and the pain will not go away but the medication will make a huge difference and hopefully Robbie will be able to enjoy life again.

Red and Green Not Fit To Be Seen

Oh my goodness, he gets worse. We were heading out to the supermarket and then to my mums and I happened to glance down to see the horror at the end of his legs. He was wearing red patterned shoes and lurid green socks with bright blue tops, a truly scary sight! to borrow one of my mum's sayings, it made him look 'half sharp' but he refused to change, so I was forced to walk around the supermarket with him. The other shoppers gave him some funny looks, they probably though he had escaped from somewhere!

Oh well it will be back to work tomorrow, back to reality. I will miss Robbie, but at least it will stop us arguing about silly things, last week we almost came to blows about Boris Johnson of all things and today his insistance on rearranging the trolley in the supermarket almost led to divorce!

Going Green

It was Sam's birthday on Sunday. He had a nice day doing the things that he wanted to do despite his bruised and painful face, the bruises have come out now and his face looks very colourful. He doesn't like it because it draws attention to him, but hopefully the bruises will not last too long.

Several weeks ago Sam provided me with a neatly typed list of items that would like for his birthday and Christmas. I was very impressed, the list was organised under different sub headings and it included clothes, cds, dvds and gadgets. If only his school work was that well presented!

One of the things that he wanted most of all was a pair of dark green Converse boots, it sounds simple enough but it proved very difficult to find any at a reasonable price. I finally found a pair for £35, it seems a lot to pay for a pair of canvas shoes, but he was delighted with them and he has worn them every day since he got them. He had lots of other things too including a shopping trip with his sisters and a large sum of money to spend on clothes. He chose some very nice things and he looks very good in them.

Poor old Sam, it can't be fun having a birthday and Christmas in the same week, I really should have planned it better.

Why Would He Do That?

You will never guess what Robbie has done now! I was tidying up the other day when I came across one of his unauthorised purchases. I thought that after so long I was unshockable as far as Robbie was concerned, but my discovery left me speechless. There was just one question bouncing around in my head - WHY? Why would anyone buy something like that? HE had bought a new pair of Converse shoes, but they are unlike any shoes I have ever seen - they are see through!! Unfortunately I can imagine how ridiculous they will look with Robbie's impossibly loud socks on display to the world. Why on earth would a man with one foot significantly bigger than the other choose to wear see through shoes. I asked him about it, but all he said was "they're iconic!" I give up, but if he thinks he is going to wear them outside the house, I am certain about one thing - I will not be with him!

A Step Too Far

It seem that I shocked some of the blog readers on Monday, they took one look at the picture of the wellies and assumed that Robbie's taste in footwear had become even more peculiar. Please don't give him ideas! It is bad enough coping with assorted pairs of Dr Marten's and lurid pairs of Converse without having to cope with wellies as well!

Today I have a much nicer picture for the blog, my little nephew Oliver. He seems to be changing so quickly, and he certainly looks more like my brother now. Oliver lives much closer than my other niece and nephew Charlotte and Jack, and it is interesting to watch him change week by week. He seems to be very contented and very relaxed, but the nicest thing is that when he cries or needs a nappy change he can go back to his mum or dad!

Robbie - by Sam. 16.01.07

Sam, has decided to describe Robbie from his point of view, he had a bit of help from his sisters too.

Robbie is a bit weird in some ways. He is very interested in clothes but he is really retro like he is stuck in the 80's. His favourite clothes are PJ bottoms, he calls them 'lounge wear' and he wears them all the time at home if he can get away with it. Mum makes him wear a T shirt with it because he is not allowed to eat meals without a top on, she says he is worse than Stan Ogden, but I don't know who he is (I expect he is dead, most people that she talks about are dead). Robbie also likes wearing the T shirts that he buys at gigs, but sometimes mum says "you can't go outside wearing that or you will get arrested" he tries to argue but he always has to change. There is a T shirt that he really wants but mum won't him buy it because she says it is blasphemous, that makes Robbie laugh, then we all laugh and mum gets cross. He likes big patterns and bright colours, you should see the shorts that he wears on the beach, they are very loud - just like Robbie really!

Sometimes I borrow Robbie's socks and that makes him really mad, and whatever pair I have nicked he always claims they were his best pair! He used to wear boxers but they bunched up and mum said it made him look like Gandhi (that is someone else who is dead, he used to wear a thing that looked like a big nappy). Now he wears trunks (Robbie not Gandhi) and he likes them better because they are more comfortable.

Emily says he has a sort of skater style and Laura calls him a 'geek with chic' but I think weird sums it up best. He has a thing about shoes too, he collects them, he loves Dr Marten's and he likes converse too, they have to be bright colours, in fact the stranger the better as far as he is concerned.

Robbie eats revolting things like black pudding and dripping, he dips bread in his gravy and sometimes he even eats ostrich burgers - disgusting! Sometimes Emily tells him off for keeping evil things in the fridge, she is a veggie so she gets a bit stressy sometimes.

In some ways Robbie is like me because we both like facts and details and we don't like people to mess up our routines. The person who is most like Robbie is our little sister, they look so alike and she is loud, noisy and totally mad too.