An Interesting Day - Happy 18th Birthday to my Gorgeous Boy

Never has the difference between the face we show on Facebook and reality been more profound than today!

Here's my Facebook post:

Well it's been an interesting day!  Happy 18th Birthday to my gorgeous boy Matthew 😍😍😍  huge thanks to everyone for cards, pressies, pennies and help x x x x

...posted after my lovely lad's 18th birthday party which was held within the "Party in the Park" evening at Walton Gardens.  Lots of lovely feedback from friends and family, wishing him a happy birthday, and commenting on how happy he looks.  What they don't realise, though, is the "Quick, Matthew's awake, take a photo!" comments that preceded each shot!  They don't realise the seizures that preceded and followed these shots.  The emotions that flooded this day - the rite of passage 18th birthday!

I woke up this morning at 5am in tears, knowing my child was now an adult. OK, so he still operates as a toddler, but he's made it to 18. His syndrome - Lennox Gastaut - says only 5% of kiddies reach adulthood with "near normal intelligence" and 10% don't survive until this point.  Matthew doesn't fall into either of these statistics, unfortunately and fortunately respectively. He's in with the rest of his LGS cohort experiencing a devastating form of epilepsy with multiple seizure types, severe learning difficulties, an unusual spike and slow wave EEG and general regression - which I don't know where it will take us in the future.

This morning it just all flooded over me and I mourned the adult he could've been. I re-mourned the child I had for the first 3 3/4 years since the first seizure took us on this path.

Over the next couple of hours he had a couple of brief seizures - not unusual for him, but each one still tears my heart out.

A dear, dear friend popped round for a post school run cuppa, and dealt impressively with my morning weapiness.  Chatting to both my sisters and my daughter lifted my spirits and I got on with the day.  Even my ex sis-in-law brought comfort!

When Matthew eventually surfaced, he was quite bright so I whipped him off to college, walked the dog and did some errands to prepare for his party this evening.

He only had a couple of pressies to open, as he doesn't play with different stuff, but had loads of cards and wishes from people around us.

Daft things, like not being able to find the air pump for the only pressie I could find for him - a blow up settee - sent my bottom lip wobbling again!

Unfortunately, a lot of my friends' youngsters weren't able to join us at the party, but as WarrPAC we'd committed to running the sensory area of "Party in the Park" so I filled the car full of gubbins, picking  up a buffet on the way and headed to Walton Gardens.  Our WarrPAC team really pulled out all the stops to set up the area you can see in the photo's above - so,so grateful and proud!

Matthew himself was quite tired for a lot of his party, with bursts of energy and lovely responses to his favourite 365 days per year song "Happy Birthday"

Near the start of the "do" another young lad went down with a seizure - pierced my heart even tho it wasn't my boy.

The evening went better than I'd expected, with lots of visitors to our area. As we were packing up, however, Matthew had another seizure and chilled on a bean bag for a post party snooze.

Wee bit of dark humour at the end - I'd snuck out to the side of the marquee for a cig whilst watching my boy sleep it off - a group of stewards came over as there'd been "a child left in marquee 4!!"

So.... when I said on Facebook it'd been an interesting day, I guess I meant harrowing!!

It's now 3am and my lad's still whispering and chatting upstairs. I hope he settles soon, cos I wouldn't mind a wee bit of rest myself! He had his last night's respite in children's services last week - had a lovely party there, with a fab photo book from all his years' stay - but I don't actually know when my next respite will be - transition huh?  Think that will be a completely different blog post!!!

When they say "You deserve a medal"......and then you get one!

I guess most parents of special needs kiddies have someone say to them "You deserve a medal!"  This could be said with empathy, with sympathy or occasionally with pity.  I agree that we all deserve a medal - it's not the easiest of lives to live, yet THE most rewarding!  It came as a mega shock, however, when I received a letter from someone calling me their most obedient servant saying that I'd been nominated for a British Empire Medal - Oh My Oh My Oh My!!!! 

The letter was "in strictest confidence" and I've had to keep the news under my hat since, which has been excruciating!!  It has, however, given me lots of time to reflect on the award and the fab people that have made it happen - so here's a bit more background.....

Warrington Parents and Carers

The citation states that I receive it as Vice-Chair of Warrington Parents and Carers, for services to disabled children and those with special educational needs, so obviously my first shout out is to the WarrPAC team.....

These ladies are all so special to me - especially in the last year, which has been pretty tough! I stepped down as chair in the spring after a really wobbly time with my boy - his condition was regressing and I was preparing for a disabled facilities grant to put in a through the floor lift and wet room.  I could no longer give the time and energy to my WarrPAC work that it deserved, but I needn't have worried as these lovely ladies have taken our work from strength to strength and worked hard with the council and health colleagues to make sure that the voice of disabled youngsters and their families is heard at the highest level, feeding in to decisions that plan and shape services in Warrington.

Over the years I've worked with lots of other parents and carers, and it has been an honour to work along side you all.  Forgive me for not naming you all, but your input has been invaluable, especially given your own responsibilities to your special families.

For more information on Warrington Parents and Carers, check out our website: http://warringtonparentsandcarers.org/  For anyone thinking of getting involved, I say GO FOR IT!!  We really need as much input as possible to enhance our work, and it is SO rewarding when you start making a difference in our families' lives.

What's Happened In Warrington

I was recently asked what my highlight has been in my WarrPAC work.  I have been fortunate to be involved in lots of progress over the years, which is particularly rewarding in the light of times of austerity.  We have a right to be proud of the work that has gone on, however, and it's worth celebrating the things we have achieved - here are some of them.....

Play and Sensory Centre.  

This is a fabulous place for our families - a purpose built soft play area for those with additional needs.  Check out their website:  http://www.warringtonsensorycentre.org/

My boy Matthew, with Isabel and Mel enjoying the ball pool

Woolston Learning Village

The excellent schools at Fox Wood and Green Lane were brought together on one site, together with a new Sixth Form College, sharing state of the art specialist resources.  

Integrated Services

Also on the Woolston site are the headquarters of Warrington's Integrated Services team.  This brings together health, education and social care under one umbrella to work together better for our families.  Unfortunately, there have been a number of enforced cuts to staff in this area - the teams that are left are overworked and extremely dedicated.   My praise goes out to them for all that they do.  I am also EXTREMELY grateful to the wonderful staff at Westland Drive short break centre - it is SUCH a relief to know that my wee man can have an overnight stay there, giving me a break whilst knowing he's in such caring, professional hands.  WELL DONE for your second "Outstanding" Ofsted report recently.  

Working Together

It has been a privilege to work with so many agencies and charities across Warrington - a huge thank you to you all, and apologies if I've missed anyone out....

Play and Leisure

When I started my work in parent participation, there were few opportunities for play and leisure for disabled children.  Thanks to all our partners, there is now a MUCH wider range of things to do, including swimming, youth clubs, sports clubs, arts & crafts.   A big thank you to all our partners.

Co-Production

This is the next step in parent participation - we started off with the council and others telling us what was going to happen..... then we started to have input into those decisions.  The next step will be very exciting!  We will all be working TOGETHER to plan and decide changes - you'll be hearing lots from Warrington Parents and Carers about this in the coming months :) 

Supporting Me!

Apart from all those involved in the "work" side of things leading up to my award, I can't miss the opportunity to thank my family, friends and church for all their help over the years.  Nearly twelve years ago, my world was turned upside down when epilepsy struck my wee man out of the blue.  It has been a tough, but fabulous journey since then, and my heartfelt thanks go to all who have made it possible x x x

Again - I'm sure I've left people out - thank you everyone!

And Finally....

One of my first thoughts when I opened the award letter was "Our Dad would have been proud"  We lost him this year, and the hole I feel in my life is immense.  I love you our Dad x x x 

Journeying backwards, looking forwards

It's been a tough few weeks here, with a number of "reality check" moments about dealing with a regressive condition.  It's kinda mad me look back at stuff and re-evaluate life.  So, in a philosophical mood, I thought I'd blog about it all......

Twelve years ago I'd just finished toilet training my 3 year old and was looking forward to him starting nursery school.  He had a lovely time there, the staff were fab and he learned lots - could write his name, count, sing songs, do jigsaws.  Towards the end of the school year, however, he had a seizure in school and our lives changed forever.

He was diagnosed with Lennox-Gastaut syndrome and immediately lost a bucket load of skills that he once had.  Since then we've learned to cope with the condition, with a mantra "Mattew's happy - everything else is our problem"

Year on year we see extra skills go.  Such a tough thing to cope with, but Matthew remains happy - probably the happiest teenager I know!

A few weeks back we had an occupational therapist in to go through adaptations to our house to suit Matthew in the future - a wet room, and through the ceiling lift to keep him sleeping upstairs safely.  I struggled with these decisions as it was another confirmation of my son's deterioration and the increasing problems we will face in the future.  I kinda try to avoid looking into the future as far as possible as it's then that I'm likely to go slightly mad, or want to curl up under a duvet in a darkened room, preferably eating chocolate!

Last week I met up with Matthew's teacher to discuss his targets with her.  The school uses a system called "B squared"  which has lots of little activities to tick and show progress.  Unfortunately it's can't really measure regression, so she had to start again and do a full review of what Matthew is able to do......

Obviously you can't really make out the detail in this, but the bottom bit, highlighted in pink, shows the skills that Matthew could do last year.  The top - in green - shows what he is currently capable of.  ALL of the stuff that was previously marked as "completed", he can no longer do :(

No I KNOW that Matthew has a regressive condition, but to see it demonstrated so harshly in black and white (and pink and green) was a real kick in the teeth.  I was in tears with his teacher (who was SO lovely and supportive)  ..... went to a friends, cried and drank coffee ..... had a duvet day in bed.  These things are bound to get to us, so I had my pity party, then got up and got on with it!

I was reminded of a poem I'd written years ago, when Matthew was in year 2 at a mainstream school.  The rest of his class were doing their first lot of SATS tests, but Matthew was excluded because of his learning difficulties:

Special – With Educational Needs

They set our kids milestones,

Complain when they fail,

Try to fit them to their moulds,

All to no avail.

They call our kids naughty,

When their skills, immature,

Frustrate and confuse them,

Head banging the floor.

Our kids, skilled at fitting,

Can’t fit with their rules,

Their seizures confound them,

Make them out like fools.

Don’t try to assess them,

With those measures we dread.

Please just  understand them,

Get inside their head.

Our kids DO make progress,

In inches, not miles,

We don’t measure by SATS scores,

But by cuddles and smiles.

Their seizures have left them,

Fragile, but not thick.

They’ll advance, and they’ll grow,

If you learn how they tick.

So please give our children,

Their own chance to shine.

Put yourself in their shoes,

Or even in mine!

It was tough at the time, but it made me think again of the value of the milestones and tests that our kids face - or rather the lack of value.  These performance tests have their place in progressing kids, but completely fail to capture the amazingness of non-typical kiddies.  Yes my boy is heading backwards academically.  Yes it's tough.  But my boy is REMARKABLE!!!!   He is happy, content, positive, bouncy, loveable and loved!!

His teacher went on to discuss a certificate he'd been awarded for cheating at games!  Imagine getting a certificate for cheating - how weird is that??!!  They were playing a curling game aiming towards a target and Matthew would sneak up with a sly grin on his face and surreptitiously nudge his piece towards the centre of the target.  That tells more about my boy than any test would:

For "using his initiative" read cheating - that made me chuckle so much.  My gorgeous, cheeky, cheating boy!

School then did a FAB birthday card for him, which is what I would like to finish this blog with.  Happy birthday my lovely young man.  I have no idea what the future holds for us, which is a bit scary, but I know that you will bring me GREAT joy, even through the sadness....

I thought I was having a bad week - and then my dog died!

The life of a special needs mum is always going to be a bit more complicated, a bit more challenging, than your average mum, but there are times when the thick brown slimey stuff seems to hit the fan at greater velocity and volume than even we're used to.  Last week was one of those times!

Day by day I get on with the stuff I do - dealing with seizures, changing nappies on a teenager, shovelling in meds etc.  Kinda don't give it much thought any more, but when other stuff happens, you realise how many straws there already are on the camels back, and how long you live constantly in a state where it's only a few more straws from breaking.

Something will happen, and it'll start to get you down....

Something else will happen - and you'll drift into "woe is me, my life sucks" mode....

Something else will happen on top - and you'll get angry....

Something else will happen in addition, and you'll find yourself manically laughing, rocking, saying wibble wibble and generally behaving very oddly!

These "somethings" may not be huge events, but each straw, on top of an overloaded person, is just one more thing to cope with, to overwhelm you.

....and then your dog dies!

It shouldn't really be any surprise that stressful things happen, but when it all happens at once, that's the real test of you, your support system, your friends, your family and your faith.

That's when I realise how fortunate I really am.  The fan is going at full pelt, the sh@@ is hitting it and it's flying back in all directions, so I'm ducking and diving and not smelling of roses.  I say "fortunate" and not "lucky", cos no-one with this amount of sh@@ in their lives could be considered lucky - but I am truly blessed with some amazing friends and family.

I've had people with me when I cried when I thought I was just having a bad week....I had people with me when my dog died - one friend delivered my dear dead dog to the vets for cremation whilst another cleaned up the poop in my garden for me so I wouldn't have to face it.  My family's rallied around me with food parcels and phone calls.  My church prayed with me and my boy.

I have known deep despair and deeper joy this week

I am blessed!

My boy in his usual position recently - flat out on a settee somewhere!  

Picture the scene - it's 1 am and I really really want to go to sleep. My boy and my dog, however, have other ideas!

Count my blessings

Hello dear blog,

After my last post which contained a lot of moaning, and some smatterings of good times, I thought it might be worthwhile to spend a blog just counting my blessings - I have lots of them:

1. Alex

She's not perfect, she has her moments as any teenager has, but she's still a star!  Here's two poems - the first she wrote for Matthew, and the second, I wrote for her.......

Sonnet about Matthew

Should I compare you to a butterfly?

You dazzle better than any creature

Constant flapping will take you to the sky

You are an odyssey of all nature

Think of butterflies, their life is shorter

That’s why your life is so precious to me

Butterflies intricate patterns aren’t better

‘Cos your smile can lift up the whole sea

I love you so much, nothing can compare

Nothing can ever break my love for you

People who love you give you lots of care

You are amazing this poem is so true

We will help you, your friends and family

You are so so very special to me!

LOVE YOU!!

By Alex Hall, 13, brother to Matthew

Special Needs Daughter

I have a daughter with special needs.

She needs to be loved.

She needs to be not overlooked.

She needs to be made to feel special as a person in her own right.

She needs to be a child – to play and laugh and be silly

Even when those around her are stressed to their limits.

She needs to be able to grow and to thrive

Without worrying about her brother’s illness,

Or her mother’s sanity.

She needs to titter at words like pooh and booby!

Not lose her innocent vocabulary to words like

Seizure, autism, drugs, operation.

She needs time, quality time.

Not time stolen away from her by her sibling’s

Appointments and therapies and procedures.

She needs to be selfish – not always

To be thinking of others’ needs as more important.

I have a special needs son.

But I have a special needs daughter too.

I NEED to see to her needs as well.

And to remind her

Just how very very SPECIAL she is.

By Gail Hall, mum to Matthew LGS epilepsy, ASD, Alex – my gorgeous little star!

2. Matthew

OK, so my dear boy is often the cause of many of our problems, but I just want to celebrate him as a blessing!  He has two settings, "manic" and "off" - when "manic" he is happy - like ALWAYS happy - he hugs, he kisses, he clambers on you all knees and elbows, but he's happy.  I may be worn out at silly-o-clock and he'll start singing "Happy Birthday Caution Wet Floor" and I can't help but smile.

3. Family

I've got an amazing family - again, they sometimes do my head in, but I love them HUGELY and I KNOW they do me too!  They are there for me in all sorts of big and little ways.  Really felt it at Christmas which was the first time in AGES we had my mum, dad, bro and sisses all together round the table - special (and amazingly no arguments!)

4. Friends

Looking back thru my last blog, my crazy week was punctuated with good times with friends - church friends, ikea mums, thursday night friends, Warrpac friends, Matthew's Friends friends.  I truly am surrounded by some remarkable people :)

5. "Work"

I only really work in a voluntary capacity for Warrington Parents and Carers and Matthew's Friends - these two "jobs" though are a real blessing as I get a chance to do something of value to myself and others.  True, there are pressures, but there can be no greater reward than feeling that you're actually HELPING someone, or working WITH the system to help improve it, rather than just banging your head against the system in frustration.

Yup, it's worthwhile, once in a while, to count your blessings, cos I have MANY :)

Heck of a week

Well, I created this blog with the intention of regularly updating it, and giving the outside world a little insight into life as mum of a child with special needs.  Then the usual demands of life took over and I never got around to posting on here.  Hey ho, must try harder!

Anyhoo - I've had a bit of an uppydowny week, so I thought I'd release a little vitreol and blurb it all out on here!  Nothing hugely MAJOR has happened this week, just lots of little blips, which have joined up together to produce a whole load of straws to balance on this little camel's back.  I thought a bit of cathartic writing up might release me from the troubles of the week and let me bounce happily into a new week.

We start the week with my struggling with a little water infection - nothing major, just a bit of a pain, so to speak.  Well, actually this started in the last couple of weeks - this week started after the first course of anti-biotics didn't do owt apart from causing a few EXTRA symptoms and troubles - won't go into the details on here!  Sounds a bit odd starting a blog with a UTI, it just runs as the backdrop of the week - when I'm not running at 100% it kinda affects everything else I do and makes my general day to day life a little more trying.

Monday was my mum's birthday - invited her round with my sister for a birthday tea - twas a lovely meal (although I say so myself) although my ma, bless her, has a habit of putting her foot in it and somehow giving me grief - like spotting that her birthday present had dust on it and bringing up the cracker biscuits that I lost at Christmas (long story, but after enjoying a nice meal she HAD to have a go didn't she??!!)  Love her to bits really.

Matthew was in respite today - only for a tea visit as they're refurbing - he's been REALLY quiet recently bless him - has moments of brightness, well actually LOUDNESS, then drifts back to lying on the floor with his bum up in the air.

Tuesday - put my feet up and had a bit of a rest whilst waiting for a post delivery and my next lot of anti-bios from the docs.  Was out on Tues evening picking up a cheque that my dad's choir donated to "Matthew's Friends" - amazing charity that I'm proud to be involved in - check out their website and my boy's story.....

http://site.matthewsfriends.org/index.php?page=gail-s-matthew-s-story

It was a lovely evening, and REALLY grateful to the choir for all their sterling efforts, but was a little bitter sweet as my dad's had some "issues" - you know the committee backbiting kinda thing - he's been really upset by it recently and it kinda put a shadow on the evening.

Wednesday - boy still not too hot, but off on the bus.  All fine, tho the driver as usual was a tad grumpy - he was grousing about having to drive to the respite back up place "I've had enough of this job" he grumped - yeah mate, I've had enough too, but I keep smiling (most of the time) and get on with it!!  I was actually feeling a tad grumpy too as I'd woken up at 4am with a VERY soggy boy cuddled up to me - how nice, that warm feeling as you are just waking up in the morning, only to realise that the warmth is coming from your son's slowly spreading urine - delightful!

Dad came for tea, which was really nice right up until the point that we realised that Matthew had had a pooping accident, stood in it and tap danced round the house - lush!  Said tara to mi da, chucked Matthew in the shower and dumped him upstairs with Alex whilst I started the LOVELY work of scrubbing two carpets, the bathroom and digging poop out of M's shoes.  Felt quite worn out by the time I'd finished and went upstairs to check on him.  Alex, bless her, had put Bob the Builder on her telly and was curled up with Matthew - he was pretty spaced out and not really taking much notice, but Alex was enjoying it!! To add insult to injury, Bob's story involved manure spreading and horrid smells.

Eventually, my darling, clean-smelling boy was safely in bed and I hit the computer with a vengeance - I'd fallen behind on some arrangements for our conference next week and so had a REALLY busy late evening doing itineraries, "you said, we did", fridge magnets, lists of jobs etc.  Crashed to bed a t 1am

Thursday - Matthew has a jerk at breakfast so not really with it as I got him dressed for school.  The bus unusually turned up 10 mins early today and unusually Matthew wasn't quite ready, but got him on the bus within 6 minutes of the beep - he was much  more with it by then.

Quick bit of catching up with Warrington Parents and Carers business first thing, followed by a chill-out time with the girls at Ikea - ace to catch up with them all and nice to have quality time out :) :) 
Off then to hire a carpet cleaner to continue yesterday's clean up operation

OK, so fed up of "eau de poop" I headed off to the Rug Doctor shop, to be met with a charming teenage assistant:
Me: Could I hire a Rug Doctor please
CTA: You need a passport or driving licence and a utility bill
Me: I have a passport AND a driving licence here
CTA: No you need a utility bill too
Me: But these have my photo AND address on, is that not enough
CTA: No you need a utility bill too
Me...: Why?
CTA: In case someone has broken in to your house and stolen your passport and driving licence
Me: What - someone with MY face? (Holds up passport photo next to mush)
CTA: Yes (Shows signs of "maybe this arguament aint working" but aint backing down)
Me: OK then, thank you
...walks off bemused

 

Eventually went home to hire the cleaner elsewhere!  Made me a tad late for my mum's so got a little "dig" in there - hey ho!  Got out for the evening later on for a bevvy at a mates, bit more down time :)

 

So, Friday dawns, another urine soaked start to the day (M's not mine, tho my UTI is casually ticking away undeterred in the background of this story, making me feel a tad under the weather grrrr - not helped by the stomach upset that the new anti-bios brought with them)

 

Great start to the day with a dentist appointment - I've had toothache for a while now, partly thru sensitive teeth, but also struggling to chew on one side.  Had an xray earlier in the week and off to get the results - my palms were sweating just at the thought of entering the surgery, even before any HINT of drilling etc - I am a COMPLETE wuss at the thought of the dentist - remember YEARS ago turning up at a dentist appointment in Cardiff dead cool on my motorbike complete with leather jacket and tassles.  Sat in the waiting room wondering what the noise was, only to realise it was MY OWN tassles shaking with my nerves - not cool!

 

Anyhooo... got into dentist, only to be told that it's my gums receding and there's now that can be done - get on with it.  I was DREADING having any treatment, but to be told that there's nothing that can be done about my nagging toothache was even worse.

 

Left feeling down and disgruntled and headed off to church for a cuppa - nice break and a lovely chat with some lovely ladies - one of them was telling how she'd been fed up a few days earlier "I was so fed up, you couldn't even give me chocolate" - that statement hit all the rest of us - we could SOOO feel her pain!!!!

 

Eventually dragged myself home for some serious carpet cleaning.  Poured the cleaning fluid into a cup to measure out and sat it on the side.  Went to fill a bucket up with hot water out of the shower, but the shower lashed back at me, soaking me.  I jumped back and knocked the cleaning fluid everywhere.  Minor incident, I know, but by this point all the stuff going on was getting to me :(   I don't often swear - honest - but a couple of expletives snook out then, and later on when I accidentally dropped the scrubby thing out of the window.

 

Anyway - got stuck into it and had a good few hours carpet scrubbing, tho occasionally I still get the gentle waft of eau-de-poop!

 

Friday evening, get the boy bathed and in bed.  Thought I'd jump in M's bath, only to be disturbed by my gorgeous girly who wants to collect her clothes for a sleepover, and waits until the moment I settle into the bath to multiple text me - hey ho, no rest for.....

 

Saturday started at 4.30 am with a change of bedding and Pj's for me and my boy.  Joy!  The good news is he's now brighter and much more responsive.  The bad news, it's 4.30am and I'm tired - I really don't want him asking me to sing and bouncing off my head!

 

Got up and tried to catch up on a bit of housework - had an embarrassing mound of recycling in the corner of my kitchen (good job my mum didn't visit)  Sorted our dishes, and laundry and starting to feel on top of the day.  Opened post which included a letter from our transport services with a formal complaint that we have been late too often recently, including a lecture on the unfairness of this on the children with complex needs on the bus.

 

Burst into tears.

 

Fourteen hours later, I am trying to unpick my feelings of this morning.  The obvious phrase of the straw that breaks the camels back comes to mind.  I feel quite embarrassed really that one small letter can send me so far over the top.  My reaction throughout the day has been hurt, anger, revenge, negativity - there and back again.  My dad came as usual with his Saturday afternoon home made soup, only to get the emotional fallout of the week, bless him.  He suggested I might be depressed, which is a fair comment when you've got a blubbering daughter about a silly letter, but it really opens a mega can of worms......

 

I gave up smoking last December, and shortly after came off my anti-depressants.  Two BIG achievements in my life, but this week has tested both of them.  I've got really naffed off a couple of times at night and have had a couple of cigaretted :( :(  I'm also wondering whether if the ups and downs stated in this week should all just be manageable, without leading me to thinking that I actually need the anti-depressants back in my life.

 

So, big decisions needed now - I REALLY need to keep off the cigs.....I REALLY need to keep stable for the sake of my family.....Do I hit the anti-d's again?  Do I need them?  Is it just that I've had a rough week, or am I really so fragile that I need a bit of medication safety net?

 

Will have to think on that one.

 

Just to finish the week on a high, however, my mum took me and the kids out for a meal this evening - really nice evening - lovely food, lovely company and no unnecessary digs from my ma!  Got back and Alex even tidied the kitchen without my asking -which unfortunately makes me wonder about her trying to work harder just to cheer me up when I'm down, shouldn't be her job really.

 

Right, that's it, my week in a nutshell!  Onwards and upwards - I suppose!

 

Here's to waking up dry and happy tomorrow!!!

Welcome to my special family

Well, I've never "blogged" before, but I watched "Julie and Julia" as a distraction from my mound of ironing, and was inspired by a colleague's blog, so I thought I'd have a go!

So, then I stared at the "name your blog" bit and came up blank - well obviously I didn't in the end cos you can see it above!  The focus was kinda on my family - my two "special" kids.  My lad, Matthew, is officially special as he has Lennox Gastaut epilepsy with a side order of autism.  My gorgeous girly, Alex, is also special - just cos she is!

I've called myself "unspecial" - not cos I really am, ALL mums are special, but cos I'm not super-hero, super-strong, amazing sort of special - just your run of the mill level of special that goes with the territory.

I guess I'll write more in the future, but as usual it's past my bedtime and I'm still pratting around on my computer, so I'll turn in for now.

Night blog!