Help me run the London Marathon again (my first VLOG)

I am delighted to be a finalist in the competition to be one of 4 official London Marathon Bloggers for the 2014 race.  I am down to the final 15 and now the competition has gone to public vote.  I was asked to make a 90second video on why I wanted to run the London Marathon and this has now become my first foray into Vlogging (video blogging).  Xanthe helped edit it and the ukelele soundtrack is also provided by her.

I was not given much notice to make the video and Daisy was also pretty poorly at the time so it was put together on a Sunday while we were also liaising with the hospital on what new antibiotics to start, delivering blood samples to the ward for analysis and dealing with her seizures and pain - no wonder I look slightly manic in some of the shots!

As you know, and the video explains, I love to run and it helps manage the stress with my life with Daisy.  I ran the marathon this year and here are the two blog posts I wrote about my experience with marathon running and why I do it

A tale of three marathons

A tale of three marathons - the postscript

So - if you would like to help me fulfill my wish to run a sub-4 marathon and raise even more funds for ShootingStar-Chase please click on the link below to vote (it takes seconds!)

VOTE FOR STEPH!

Did you miss something Mr Timpson?

You may remember that earlier this year I was part of a delegation of Special Needs Bloggers who met with Edward Timpson, MP - Parliamentary-Under Secretary for Children and Families.  We had an opportunity to share with him our personal experiences of life parenting a child with disabilities.  He was very engaged and appreciated the time we spent helping him understand the realities of life when you are involved in a more extreme form of parenting.  In fact after the meeting I received a lovely note from him which even mentioned some of the points I had made and thanked me for my time as he wanted to ensure that he full understood the challenges parents like myself face.

Happy 5th Birthday " Was this in the Plan?"

Today is 5 years since I started this blog.  5 years ago, Daisy was 3 years old and was once again in hospital,in the early weeks of a stay which eventually lasted for 12 months.  5 years ago this month she had her first central line inserted into a main vein into her chest, the tip of which rests near her heart, and she started on the intravenous nutrition (TPN) she still needs, 5 years on, to keep her alive.  I started this blog as a way of recording what was happening in our lives at the time, over the years it has evolved and changed as we have had to adjust and change to the constant challenges being thrown to us.

The day I dodged a bullet

As my children grow up I find myself using some of their phrases to describe things and "dodging a bullet" really does describe what happened to me recently.

aaah - the wisdom of Yoda...

When you are a full time parent carer life tends to revolve around the health needs of your child, or in my case children - together with Daisy's ever increasing care needs, IV infusions, TPN, pain

Parental Guidance Required

I have four children, their current ages are 16, 14, 11 and 8.  In the eyes of the law however my eldest child is in a grey zone, hovering between adolescence and adulthood.  You see I have recently discovered that the years between 16 to 18 mean different things depending on what you are looking at.

When Theo turned 16 he proudly reeled off the list of all the things he could now do:-

Ride a moped, buy a lottery ticket, drink alcohol if it is with a meal, fly a glider...

That was the interesting stuff.

But what about the other stuff?   The stuff we really didn't think about until it started to impact his life.

Getting it into perspective

We seem to live in a time of competitive parenting, and nowhere more so than London.  It's all about getting your child into the right school, playing the right sport, attending the right clubs, having the best parties, what grades they get, what they are learning...it can drive you crazy and make you feel insecure. Sometimes those insecurities then leak into other areas of my life - I blog for me and the people like me, so why do I feel the need every now and then to engage with the (insert your own adjective here) community of Mummy Bloggers, it only makes me feel inferior that I am not listed in the Tots100 blogs, or ranked as one of the best Special Needs blogs, or that I just don't have the time to sit for hours on end tweaking the look and feel of my blog.  Really all these pressures make me forget my number one rule, focus on what you have, not what you don't have.

Want to know more?

Don't forget that although my blog is not updsted as often as I would like you can always find out what is going on in my world  via Facebook and Twitter.  

www.facebook.com/daisysangels

www.twitter.com/stephnimmo

The Tiger Moth

In my life before Daisy I did not have a clue what the term "learning disability" actually meant,  I could have probably quoted some textbook, meaningless phrase but the reality of life for someone with a Learning Disability - that was foreign territory for me.  Then along came Daisy, with a learning disability as part of the package and I had a high octane tour of a very new world.

Actually,  Learning Disability is not really the term I would use to describe what is going on with Daisy - put more accurately, she has a Learning Ability.  While the rest of my children are like super turbo charged jets, with onboard computers and fly by wire and all this amazing stuff that means that they can get from A to B with the minimum of disruption, Daisy is like a little tiger moth, bouncing around in the turbulence, with no electronics or gizmos, just her sheer will and determination to get from A to B, no matter how long it takes.


And here's the incredible thing I have learnt from my life with Daisy, not only does she learn skills and develop, at her own pace and in her own way, she has given me skills and taught me things that I did not even know.

When you live with someone like Daisy, the pace of life becomes slower, you think before you speak, you have to  explain everything, many times, you plan, you change plans,  you drop down a gear so that they can be there with you in your life.

I have learned patience - you need it in bucket loads when you have to repeat over and over where you are going today and why in order to reassure them, or when they decide not to play ball just as you are about to leave the house.

I have learned not to sweat the small stuff - suddenly the achievement of physically getting out of the house with everyone reasonably happy is far greater than getting anywhere on time

I have learned to put things into perspective - yes she will not do Key Stage 2 SATs but she can sign her way through "Miss Polly had a Dolly" and surely the ability to sign your needs and communicate them is more fundamental than some piece of paper that no one actually cares about anyway

I now appreciate what I have and not what I don't have - no longer am I that competitive, suburban mother running between ballet and swimming football, I don't care about those things any more, I'm just happy that Daisy laughs when we watch Fireman Sam together, even if I have seen the same episode about a million times.

I have learned that happiness comes in lots of different ways - I mean who needs a theme park when you can sit in a car being squirted with rainbow foam at the car wash!  Needless to say we have a very clean car and a weekly visit to the car wash is guaranteed to make Daisy smile.

I make the most of the opportunities just to be me, more than anything having Daisy has made me realise that I need time for myself so when she is in school or at the hospice I take time out for myself.

I have learned to slow down and listen and appreciate.......Daisy has as much right to her opinion as the rest of my children, to allow her to have her voice we have to listen, she may not speak but she can communicate.

I can't change our situation but I can manage how I feel about it.  I can live in the moment, Daisy has taught me to do that.  Sometimes it would be nice to be a passenger on a nice, easy to fly jet but at least in the Tiger Moth you really do know you are flying.

It's Learning Disability Week and the theme is Superheros so I'm dedicating this post to Daisy the Tiger Moth, my little superhero who has taught me so much as she navigates her way through life.

To get involved in Learning Disability Week 2013 or find our more have a look at Mencap's Website or tweet #LDweek13