It's not you it's me...

 "Learn from yesterday, live for today, hope for tomorrow."

I used to have this on the wall of my stairs so I could see it everyday,  I thought it was a very positive thing to have and one of the many quotes I have picked up over the past years to keep me going.

I have tried to make 2015 a very positive year.  I have read meme after meme on social media, hand picked a few relevant ones and tried to think of them during the day to dayness of family life, but I hold up my hands in surrender as my positive frame of mind has started to ebb away.  The reason for this, well the truth is simple...

 I am tired.

 So very very tired, and despite my efforts to see rainbows and Unicorns and to fill my thankfulness jar daily I am struggling a little.  

This is not the kind of tired that comes after a late night or the broken sleep of a newborn, I mean the deep down tiredness that makes your bones ache and your head fuzzy.  The kind of tired where you go to bed, sleep and wake barely refreshed before you hit the treadmill of the school run and it all starts again.

This is the kind of tired that comes from feeling like you always have to step up, try harder, fight a little more just to be heard.  The continual drudge of paperwork and explaining and getting therapists to stop thinking of your child as a tick box, paperwork, money saving exercise but as a small person who still needs help.  Anyone can see the smallest one needs physio so why should I be arguing with the department holding back tears just to get them to not discharge you?  (However, good job I did though because our new one can see so much work needs to be done and finally after years it feels like we have someone on our side again.  Our side? Jeepers I even talk like it is a battle...)

Some Dr's this year who have not blinked at us before have become interested, open access has been offered in one clinic where we were almost discharged previously.  Why the sudden change of heart? What is not being said? Worry.  What if's.  Am I missing something? Guilt.

More difficulties in our child have been assessed over the last 12 months replacing the initial physical ones.  But these are not the kind of problems that can be supported by therapy, wheels and equipment to enable progress.  It means we must change the way we all think, change how the smallest needs to be taught, there have to be changes in our understanding of his learning ability.  The future is so bloody unknown and we are all sure extra help in secondary is a given but not sure where he will fit... more visits, more research from us, more thinking, more worry about friendships, being different, Starting again.  Planning.  Forward thinking.  Always being ahead.

Along with all the above this year there is also the usual housework, shopping, homework, clubs, juggling school and specialists whilst trying to make family life as normal as possible; it is quite honestly exhausting.  In turn it makes me, in my eyes, a rather unreliable friend but I have little left to give.

I am useless at responding to texts unless I am hiding in the bathroom with my phone and you happen to send a message right then (now if I reply quickly you will be worrying I am on the loo!)

You invite me out and I rarely show up. I don't make small talk very well and am often easily distracted.  I am late, flakey and say the wrong thing at times too.  But sometimes it's just too much to ring, or even to talk, some days it is just a little more that I have in the tank to give.  Double guessing stuff, thinking of different ways to help get 2 times table to stick after 3 years of trying, thinking of how to get a home project done that includes some therapy and IEP targets, trying to get the smallest to pace, watching for behaviour quirks to see if we have pushed it too far this week/hour/day - sometimes it is enough to think about... and I am sorry.

Today we were watching Newsround (get us and our current affairs knowledge) and there was an article about areas of Africa being Ebola free.  It featured children going back to school and some very heartfelt interviews with those who have lost family due to the terrible spread of the disease.

"Mum, where will I go if you and Dad die?"  was the sudden unexpected, but very logical question that came from him.

And it took my breath away, the little bit of me that was still holding up snapped because I could not answer.  Not only do I not know who would care for him but also the follow up questions started to fire inside my head, how would they transfer specialists?  Who would have knowledge of his syndrome?  Who could cope best with strategies to support him?  Who could cope with the needs of a only child who seeks a playmate and companion along side being the parent/guardian and carer?  He would need to relocate, How would he cope? Too bigger question and one in the end I simply tried to bluff over.  But this is the level we think on, it's something we know we need to look at but the question is too scary, too worrying for today as today I ache and I feel worn down and it was just one curve ball too many.

It broke me.

I shattered.

We get very good at head down plod on and in fairness I think I should give myself a bonus pack of smarties for holding myself together more this year - but so much has changed.  Loss of children within our community, loss of family, changes in the smallests needs again and the chasing to see if we can get a more detailed look into a possible secondary diagnosis.

This is why I am tired.  Because I carry loss and grief and guilt and sadness and anger and hope all at once all the time, and it is heavy.  And it is not like I can put it down - nothing will change, this is how it is and yes I should just man up by now and 'get on with it' but sometimes it's just too bigger an ask.  

But I promise I am doing the best I can, working as hard as I can to stay thankful with a heart as fragile as silk and a slightly broken glass of hope.  So sometimes if I don't make small talk, if I don't catch your eye, if I try to avoid an invite - if I don't ring you, or it feels I make no effort,know that it is simply because I can't do it, not today... just be patient and know it's not you, it's me.

My very own girl crush

I do believe the term I am looking for is Girl crush... you know when you admire someone of your own sex, look up to them and are a little in awe of who they are and what they achieve. 

At 33 I think I may have one.

For most it is someone famous - they are someone who is annoyingly beautiful without trying and help with charities and somehow find time for their fans and children and are funny and well, you get the jist.  For me though it is not someone like that.  Well yes they are like that but they are not famous, instead they are a chance blogging encounter who have evolved from words on a web page to being one of the most important members of our family.  Someone who we all love and turn to (along with their family).

She, along with her family inspire me - they work hard and love harder and it is because of them that 2016 will be the year I challenge myself all in aid of being a member of #eilidhsmuscleteers.  I shall be running Silverstone half marathon, the Great North run and resulting in the Bournemouth marathon in the first weekend of October.  Mad maybe, but hey...

When we were first told that something may not be following the course as our child started to miss milestones I did this thing, the thing everyone knows they should not do.  It eats away at you, your fingers itch, your questions grow and before you can help yourself you are on Google, the drug for eternal worriers.  I typed in things that had been pointed out regarding our child's delays and the first Dr Google diagnosis (search result) popped up and it was SMA - Spinal Muscular Atrophy.  I remember the panic, the realisation that things might not be just as simple as 'being late at sitting' and whilst good friends told me off and to think nothing of it, the fact this was my first encounter with possible diagnoses and the friendship I have since found feel forever linked somehow, as you will soon see.

Throughout the rocky road to our final diagnosis Muscular Dystrophy appeared as a possible in the form of Bethlam Myopathy. We had muscle biopsies, endless questions from Genetics and I can remember the gentle sobbing of the mother in the closed curtained bay next to us whilst Drs gave her a MD Diagnosis for her son who was happily sat on our child's bed sharing his Ipad.

Muscular Dystrophy just kept popping up and although it is not where we have ended up, it has left an impression on us all.

Enter Ever Hopeful Mummy.

A blogger who talks about family life with 2 gorgeous lasses, balancing love, hope, loch swimming and working towards making a better future with people with SMA and Muscular Dystrophy.  Her blog felt like I had found someone I related to,  her words were like someone had heard whispers form my heart and penned them in a way I could never articulate.  Sounds corny and sentimental but it is true.  The internet can be a hard, unkind place at times but I know without it the last years would have been much harder if I had not stumbled over this lovely ladies musings.

After years of talking on line and surprise parcels in the post we went up to Scotland to visit them - if the kids and grownups got on brill, if not... ho hum, there was no pressure.  But it was like they kids had lived next door for years, the children whizzed away in a blaze of giggles and wheels and our day out soon included a spontaneous roast dinner and guinea pig sitting at their home.

Since then we have visited again and a few weeks ago we spent the weekend on holiday together causing mayhem and madness, though we forgot to drink the Gin!

Sheonad (real name) has thrown herself, along with her family into working with Muscular Dystrophy Scotland.  She is now one of the chairs and an advocate to create positive lives for people with muscle wasting disorders.  But she is humble, understated... helping others when at times is very much running out of steam herself.  Love, no matter how strong and fierce can tire when faced with the dailyness of having a child who needs so much of you.

Their family feels like an extension of our own - it is like our child has 2 Scottish siblings.  They are so very tolerant of him and patient and kind and they laugh and zoom and bicker and are just themselves, totally.  I want to do something to show them how important they are to our little crew.  If I lived closer it would be dropping in cake, offering to do errands, cooking a roast, popping over so the grown ups of the household could go out for an hour or two, practical help.  But that is not possible so I will do what I can... which is run.  Run and run and run and enjoy the fact that my legs move.  

I will feel the burn and be grateful this is something I can do to help others who can't.  The family have set up a family fund #eilidhsmuscleteers and I will be very proud to run for them supporting #teamorange.

So there we go... I am signed in and ready(ish) to put my whole heart into this.  It means so much to do something for a truly remarkable family and possible the funniest, cheekiest whizzy wheeled wee lass I know. 

Hope I do you proud.

Here is the #Eilidhsmuscleteers facebook link if people what to see the other events and challenges people are taking on.

To only wearing my Mum hat

It took a while to convince people I was doing the right thing.  "This is something you do for you, are you sure?" they asked. The Superman to my Wonder Woman would not let me make the decision until I had truly thought about it, double checking like everyone else it was right.

But it was.

In some ways it took courage to walk away for a bit, in others I was a coward for leaving something because I was simply not coping, yet it was something I needed to do for me and for the family as a whole.

My job rocks!  Many may not be so convinced that hanging out with small people a few days a week is fun but I love it.  Being webbed by Spiderman, being fed imaginary recipes of the most unusual kind, watching faces light up when I got to read Dr Seuss, making up stories and introducing 30 plus children to Super Potato (even hiding a naughty pea in one of the smallies jellies!)  My heart sings when I am surrounded by play dough and laughter and Princesses and Octonauts.

But work takes time - and as much as I like a challenge, my plate spinning last year simply sucked.

I did not follow up on things Dr's had missed for my child.

I did not have the energy to push harder when I needed to.

I did not look after myself when I should.

I did not seem to have the time or space for my son to talk openly and for me to see he was having friendship issues.

I was so busy chasing my tail, sorting, cleaning, cooking that I overlooked that my constant flitting about might have been a trigger for some of the problems we were facing.

So something had to change.

I took a chance and a big breath and I left.  It is not forever, as nothing is forever (I am still bank staff) but without too much fuss I just stopped at the end of the Summer term and started to focus on the us.

As a Mum with a small person with 'quirks' with more specialists than could fit in a mini bus and with half the rain forest sat in a cupboard in the form of notes, getting the right balance is well... as challenging as getting the incredible Hulk to take up cross stitch.  

I wanted to work. I wanted to be something other than a paper pusher and Dr hunter.  I needed to be re-grounded, to have a purpose and I was saved with a job that made me lighter and stronger and bought back the day to day routine I had missed for years.  It was a gift.

But children never stay the same.  They change, their needs change, things get harder, things get easier, the balance continually shifts and decisions you made which were right at the time may now be off kilter.

And now, despite wearing my pants regularly on the outside, it was apparent that 3 years on from becoming a working Mum I was not coping.

6 weeks into the school term I see it was the right thing to do.  The house seems calmer, homework is easier and we have finally completed a maths target that is 2 years old!  The challenges are the same, the paperwork if anything feels greater than ever - but I feel I have space to breathe and time to think, I can reflect a little - be proactive not reactive.

I feel lighter.

I am running again - left, right, left, right, feet crashing on to the footpaths with my music in my ears.  Lost.  Free.  Thinking things through, feeling stronger and happier, though I am turning into one of those morning drop off Lycra wearing mums which I am not proud of!  I have set myself my own challenge I have time now, a personal goal.  12 months to get to a Marathon distance.  12 months to train and get fit and know there is an end goal that is mine alone.  That feels special.

But nothing lasts forever.

This is how I feel right now sat with a lukewarm glass of sauvignon blanc because the fridge is buggered, with a child snoring upstairs after sharing 2 chapters of his book at bedtime.

In 2 months it might be different, I may be climbing the walls begging to be allowed to join in with painting and gluing and being a superhero again.

That is then though, and this is now.  And right now... I think this is the best we can be. 

Why won't the moon go to bed?

It was a crisp autumn morning,

The sun shining bright,

And a little boy noticed something was not quite right....

"Mum!" the small boy excitedly said.

"Look at the sky, the moons not in bed.

This is morning, it isn't the night?"

And looking out the window mum saw the curious sight.

This was something exciting he wanted to share,

And hurridly grabbed Ginger Cat out of his chair.

"Come see something special, be quiet don't shout,

Look Ginger Cat, look.... the Moon is still out."

How did this happen, how could this be?

The boy had discovered a mystery!

Mum bent down and asked "Do you know why

The moon still shines up high in the sky?"

The boy thought quickly and eagerly said,

"The moon just did not want to go to bed!"

"Well" said mum, "I guess that is true,

But the moon does have a job to do."

"When I grown big" the boy soon replied,

"I shall fly right up high into the sky."

In my rocket made from licorice allsort sweets,

With a button as a wheel and a banana as a seat.

I'll take my bag, binoculars, and my racing car,

And ZOOOOOOM up through the planets and stars."

"When we land softly on Mr Moons head,

I shall just ask him polietly why he did not go to bed!"

Mum softly replied "and what would the moon say?"

The boy tapped his foot in 'I'm thinking' way,

"WEEEEEEEELLLLLlllllllllllll........."

"If I were the moon in the dark on my own,

I think that I would feel very alone.

The moon never gets the chance to properly see,

A river, or house, a train or a tree.

He only ever sees the world in silver and black...

Maybe he just wanted the colour back.

So I think the Moon would simply say,

He wanted to see rainbows and sunshine for a day."

"I think you are right" Mum quietly said,

With a warming smile and a nod of her head.

The little boy full of adventure then happily sat

Cuddled in tight on his mums lap.

"I am very lucky to have a boy as clever as you,

Not many people would know what the Moon would do.

"But just as long as he knows he must go back down soon...

Cause we simply can't have a night without the moon."

Ode to the blogger

Here's to the keyboard tappers...

The non-sleepers.

The awareness spreaders.

The photo takers.

The bakers.

The storytellers.

The supporters.

The adventurers.

The friends.

The confidants.

Here's to the .com pages...

Pages filled with stories of truth.

Pages filled with joy and the little things.

Pages filled with family love.

Pages filled with crafts and ideas.

Pages filled with hope and olive branches.

And cakes.

Lots of cakes.

Here's to the photos...

Photos of smiling children exploring and learning.

Photo's of proud siblings.

Photo's of happy times.
Photo's of hospital stays and waiting room.

Photo's of bread, and coffee, and flowers and things that are important to you.

Photo's of days out and memories made.

Photo's of life, and joy, and heartache, and glue, and glitter...

And of course cakes.

Lots of cakes.

Here's to the Internet...

For bringing us all together.

For finding friendships we would never have known.

For creating the hopers, the dreamers, the ranters and the fighters.

For sharing the comedians, the artists and the word crafters.

For giving us all a space and a voice.

Here's to not simply not feeling alone.

Here's to the blogger!

Why I would suck at being a Teacher

This week over coffee with a good friend only 6 days into the school year we found ourselves sobbing into our cups trying to work out how to achieve the schools homework expectations, whilst also considering selling bodily organs to afford the usual swimming, school dinner, school trips costs!

It had been the week of 'meet the Teacher' where the poor staff have to talk to a room of parents who are either -

a) Already fed up/tired of the school run.

b) Over eager.

c) Have done it before and are there just to tick the sheet.

d) Silently panicking about how much work is involved!

They tell us about expectations, topics, make demands for said swimming money and have to do things like remind parents that uniform is best when it is named, all whilst wearing a smile on their face when I am sure underneath the calm they just want to shout "For the love of God people..."

And it was there in that room I decided that I could never be a teacher, which is funny because ever since I was 7 the only thing I have wanted to be was a Teacher.  In fact I did go to University and I did get a 2:1 in my first year (I thank you) but due to them loosing my results  circumstances I left.

But I have since decided that leaving Uni was the best thing that happened, not because I met the man stupid enough to live with me, but because I am 100% sure I would honestly have been bloody awful!

Here is why...

I don't like being told what to do.  

Well that is not completely true, I do really and I am very organised, but I also like to get carried away and wing it. But gone are the days where you can make an igloo out of paper plates just 'because' the kids wanted to and then you backtrack to find a tedious link to get it into the curriculum somehow.  Now it is so structured and slightly competitive and paper based and, well, dear God I would just suck!

Patience.  

30!!!  Class size is now 30.  30 children telling you simultaneously that Eddie has stuck bogie's in Sophie's hair, that their hamster has died (as they have told you every 5 minutes for the last 2 weeks) one is asking the same question you have answered 15 times already, whilst endless hands go up to ask to go to the loo, I could not do that smiley calm teacher face, in fact I am pretty sure I would have been sacked by now for telling them all to "just shut. the. fuck. up."  I don't know how Teachers do it and I salute them, but as I have yet to actually see a teacher have a hot cup of coffee I am debating whether it is in fact just gin with food colouring in swirling in their mugs as the saunter out the staff room helping them pull through to 3:30!

Parents.  

I don't think I actually ever considered this.  30 kids means 60 parents and we must drive them mad. I am not the best at tact, in fact the more nervous I am the more tactless I become and I am sure I would end up with a black eye after being slightly too honest at parents evening and that an awkward chat with the school Governors would follow and again... my sacking!

How do you tell parents politely to either a) just stop it, you kid is fine, in fact they are too smart and finding work to keep them entertained is exhausting or b) no really you need to help us here, you do not learn to read through osmosis or c) it's wonderful he think he will be a football player and I don't mean to be a dream smasher but everyone needs a back up plan, I would be rubbish!

OFSTED.

Like kryptonite to Superman - just the mere whiff of OFSTED in a 200 mile radius is enough to send schools due a visit into a state of panic!  The planning of the panning that they planned with the panning is triple checked and the Meerkat like pose and sudden Fox like hearing is applied just in case the class door creaks open and someone sneaks in to 'observe'.  I could not cope with that pressure at all.  EVER.

Sarcasm.

I have found, mainly through having my own, kids don't get it.  Yes, it may keep you slightly sane and is a fabulous tool with grown ups but it flies way over the kids heads!  When Billy falls off the chair he was standing on head first into the book box and you say "Well that was a good idea" they tend to simply agree and copy, whilst you red faced have to explain that is not actually what you meant.  My sarcasm button is often on a dangerously high setting so it would all end it tears. (again refers to tactfulness).

All in all, despite me believing it was my dream job, it is fair to say that in today's school environment I would simply not cope!  Instead I will stick to my new goal, making a kids book that I can leave in the capable hands of the teachers ready to make children laugh (hopefully) and get lost in a world of imagination and silliness.  

So Teachers, I tip my hat in your direction and an in awe at how you do it without wine on a IV drip by your side.  Best of luck for the 2015 year - only about 35 teaching weeks to go!

42 sleeps

42 sleeps.
An eternity when you are small.
It is like someone threw away the rule book, stopped all the clocks and you were just left with a setting sun to mark your days.

You start the Summer eager to fill this endless time - new adventures, bike rides, footballs,friends, ice cream, laughter.

Time to just be.

Space to choose for yourself.

Yet soon the lack of routine makes you fidget, you start willing the clocks would work again wanting a better way to mark your time, 42 sleeps is forever.

But as the wonder of boundless freedom wains a little, you search to find the rule book so eagerly lost but now you are awaiting Schools return, the familiarity of uniform and the company of classmates.

42 sleeps later the alarm rings, the breakfast crunching and tooth brushing, along with the book bag scrabbling commences is as if nothing had ever been different.  In that tolling of the bell your endless summer filled with shiny happy memories and tinged with a healthy hint of boredom is swallowed hole as if it never happened at all.

And just like that, everything feels right again.