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."