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.