‘Undiagnosed Children’s Awareness Day’ ~ April 13th 2013

This is for my boy, my SWAN (and many, many others). I’ve had 16 years of people asking what’s wrong with him and I haven’t got an answer. All his tests have always come back as normal.

‘Undiagnosed Children’s Awareness Day’ ~ April 13th 2013.

Saturday will be a big day for SWAN UK and SWAN International and all of it’s members. It is the first time that we will have a day dedicated to our Undiagnosed Children. Over the last year through Fundraising, blog posts, and a massive push to spread awareness, people are slowly beginning to recognise the term SWAN (Syndromes without a name) and starting to understand that thousands of children around the world are living without a diagnosis.

It is really important for Saturday to be a real success to spread the word even further.

How can you help you may ask? Here are some of the ways you can help spread awareness….

1. Wear ‘pink’ or ‘blue’ this Saturday 13th April

2. Take photos of you wearing ‘pink’ or ‘blue’ and upload them to your FB/Twitter page with a caption explaining the significance of the photo and ask your friends to share it.

3. Change your FB and/or Twitter profile photos to show the ’Undiagnosed Children’s Awareness Day’ Banner and ask your friends to do the same.

4. If you don’t already, like the SWAN UK FB page and ask your friends to do the same.

5. If you are a fellow blogger, please re blog this and/or yesterday’s post

6. If you a fellow tweeter please tweet about ‘Undiagnosed Children’s Awareness Day’

7. Tell everyone you know about it!

Related articles

• 4 more sleeps . . (undiagnosed.org.uk)
• 3 days til the winners of the SWAN UK blog post awards are revealed! (undiagnosed.org.uk)
• SWAN Awards (teamaidan.wordpress.com)
• Bloggers on Your Marks… (teamaidan.wordpress.com)
• One week to go! (undiagnosed.org.uk)

Guess where? Time lapse photography.

 

Same wall, same spot, same boys but around 8 years between these two pictures being taken.

…and now with the added ‘hairy dog daughter’.

 

It’s also part of a gorgeous walk in Cornwall. Can you guess where?

Look at me. I’ve got an iPad

Very personable hospital toilet door.

So, here I am. Writing a blog post on an iPad. My problem is how to construct thoughts and master, what for me, is new and novel technology.

The thing is I’ve nothing in particular to say. How can I describe my present circumstances in a way that is worthy of reading?

I’m bored.

There are other things that I would like to be doing. One of which is to sort out the fact that since someone hacked into my email account, I can no longer send or receive emails. For all I know, my friends and relations are sending money to some fraudster who has told them all I am marooned and penniless in Manila….

I guess that’s life for you.

Last week was dull, uneventful and the small frustrations were really down to my being tired and middle-aged and less than normally tolerant. This week it is all go. Yesterday, having got up early to see the youngest offspring off on a school trip to London, I was enjoying a tour of the brewery and having lunch with a TV celebrity that alas I didn’t recognise. In the afternoon I was presenting the launch of a historic building’s restoration and improvement fund. Today I am sitting at the hospital bedside of my eldest son. They are trying to work out if, his fainting this morning were seizures. So, far it seems unlikely, it doesn’t explain why every time he stands up, his blood pressure plummets and he goes suddenly pale and clammy and begins to faint.

So what to do now?

The little hairy dog is shut inside. I hope she is still crossing her legs and hasn’t left dog wee and mess all over the place. Psychologically she’ll be distraught and suffering with abandonment issues. She’ll require a whole evening spent curled on my lap to get over it.

And then there’s another child to collect from school and look after. Bad timing that this should coincide when the OH is away….

Fantastic space alien mural on my son’s hospital room

However, an iPad, I’m rapidly discovering is a marvellous thing. Here’s some of the pictures I took inside his room. And an app for Sudoku kept me fairly well amused.

*It is now two days on…

Back home and all the kids are well.  The dog didn’t do anything unmentionable while she was shut indoors all day, after many frustrating hours I got my email account back again – although my e-mails for two days have gone into a black hole somewhere –  and the OH (hurray) was able to get an early flight home on the excuse of a family crisis. I’m wondering what the weekend will bring.

Guess where?

Gorgeous weather, gorgeous beach at the start of the Easter holidays 🙂

It was a quite a tricky climb down but definitely worth it.

Anyone want to make a stab at where it might be?

Prodigal Rabbit’s return

This is Rabbit.

Rabbit once hung over the side of my son’s crib and kept and eye on him while he slept.

Yesterday I found him sitting on the gate post of our old house. He’s been missing for, I think, around 5 years!

Our neighbour has just cut out an old hedge and discovered him within the branches. It’s lucky he escaped going up in smoke on a bonfire. He was green and brown all over. Moss and plant matter had taken root in him. I scrubbed him thoroughly and put him in the washing machine. Last night he was back in my son’s bed.

Rabbit is now more than 15 years old. I’ve always kept a look out for him every time we trimmed the hedge. I’d expected he was lost in the garden somewhere, but as the years went by had lost hope of finding him in one piece if we ever found him again.

‘Rabbit’ was my son’s first clear word. He was much-loved and acknowledged as my son’s best friend, but where Mungo (bless him) – my mute child with no diagnosis for his handicap – has always been very good and well-behaved, Rabbit has always been exceedingly naughty! They were chalk and cheese.

In his younger years Rabbit got into scrapes and was full of mischief. I found him loveable and tiresome in equal measure.  However, Rabbit was at Mungo side throughout every hospital stay he had. He’d remain, clutched in Mungo’s arms as he went under anaesthetic and was back, lying quietly beside my son when he came round again. When Rabbit started getting lively and up to his old tricks it was a sure sign that Mungo was recovered and ready to be discharged to go home gain.

Liars and Injustice (Part 1)

I can’t stand liars or injustice. It really gets my goat. However the world is full of them.  Apparently, he only way to unravel these liars and cheats (especially the wives)  is to tie them in knots with passwords, security questions and 8 figure account numbers.

I remember passwords and I know everything about the OH so the ‘personal’ security questions are easy; but when it comes to numbers it’s all over for me.

My husband and I once had a terrible row because I’d paid a check using the wrong cheque book and the wrong account.  The money wasn’t the problem. It was the fact I couldn’t recognise the accounts by the numbers.

“It’s easy,” he said, “You just remember the last 4 digits.” He couldn’t understand that was as difficult for me to do as it is for our dyslexic son to remember his spelling rules.

“Couldn’t you just write what the account is for on the cheque book for me, please?” I pleaded with him. How difficult is for him to write: ‘The Business’, ‘Yours’, ‘Mine’ and ‘Joint’ I was thinking. Of course he didn’t. He wrote coded initials instead. They personally stand for the way he describes the account, but not necessarily the way I would and – as chance would have it – one is the same as my son’s initials and now he has no money left in his account….

He does really, I’m only joking.

Last September (it was the Sunday 25th around 4pm to be precise) I was driving along a very narrow winding lane in Cornwall.

I’m just the bloody wife…

The phone rings.

I answer it and the voice at the other end asks: “Hello, my name is…. May I please speak to Mr. F.”

“No” is my short answer. I’ don’t bother apologising any more  for his lack of availability.

“Oh, Ok then.  When might Mr. F be available so I can speak to him?”

“In maybe  a month’s time, what do you want to talk to him about, maybe I can help you?”

“Sorry, we are only authorised to speak to the account holder. Who are you?”

“I’m his wife.”

There’s a moment’s pause. I can imagine they’re thinking: he’s left her. Messy divorce on the horizon so we’ll have to be even more tight-lipped in case we’re sued for breach of confidentially in the future.

I try to explain.

Parallel Universe

I read one other blogger’s posts consistently, with voyeuristic interest.

On the face of it, we have nothing in common. Her whole blog talks about experiences I’ve never had and that makes me feel human and humble and hugely grateful.

I’ve been mostly spared having my nether regions over-exposed and prodded by countless instruments wielded by men-in-white-coats who are more likely to recognise me once my pants are down by my ankles. Her blog leaves me embarrassed by my own fecundity. It is agonizing, as no amount of good will wishing can change a thing. This poor soul is tormented by the need to be what I’ve been for the past fifteen years. Namely, a mother and a lucky cow.

Kids – with or without them – they’re an open wound of agony, grief and regret. You think that the joy that children bring makes up for everything they ruin, break or destroy. Don’t get me wrong, mine have shown me how the capacity to love keeps growing even though I blame them entirely for the loss of my figure.  They’ve also made me more selfish and time poor. They absorb so much of my energy and waking hours I can’t be as charitable and altruistic towards the wider world  in the way I would like to be.

The saddest birthday of all

My mother turned 80 yesterday and in terms of ‘worst birthdays’ this was definitely one that’s best forgotten.

My dad’s 80th was a large family gathering of three generations and old friends. We took him out for lunch at a lovely hotel, spent  the whole afternoon together, walked down to a beach near Porthscatho (some of us even swam), chatted, laughed and came back to have tea in the hotel’s garden with birthday cake we’d made him. It was a lovely day of cementing family ties and idyllic in every sense.  A sunny Saturday in late September 2009 is a day we’ll all remember with lasting nostalgia and affection.

In painful contrast, I was my mum’s only visitor on a day which should have been a celebration of her long life.

There were no gifts, no flowers, no chocolates and she had only 6 birthday cards in total: from her two sisters, her three daughters, and one from my dad. Nothing else. For in all intents and purposes my mum has vanished from the rest of the world.

My angel in gum boots

This is one of those rare posts about one of my children.

I know it is going to make me cry even though it is, in its way, it’s a celebration.

Nevertheless it will be a moment of ‘self’, and moments of ‘self’ have a tendency to drive me down that long wallowing road of self-pity. If you knew me, you’d know it’s  something I’d rather avoid as much as I possibly can.

This is my middle son, P.

He’s dyslexic, his birthday is in August and he has an older disabled brother. So, let’s say, he has a few disadvantages…However, I’d rather not go into those.

And, god love him, he is a spirited, self-reliant, independent and cheerful fellow who will give anything a go just for the experience of it. He wants to live an eco-self sufficient life and wishes he’d been brought up on a farm.