Aspie Christmas Everyone!

I love Christmas.  I love the preparation, the carols & cheesy songs, the parties, the socialising, the decorations - in fact I guess I'm a bit like Buddy from the film Elf when it comes to Christmas.

Product Review: Firefly GoTo Seat by Leckey

Yes , you read right, I'm doing a product review.  Guess what, it's for a product that at the moment Daisy can't even use but I think it's so fab I wanted to review it and tell you all about it.

Over the years, as the world has become more savvy about providing for the needs of disabled children products have been developed that are aimed at making their, and their parents lives a bit easier.  When I saw the GoTo seat I just wished it had been around a few years ago when Daisy was a bit smaller - because it would really have been a godsend.  How often did we find ourselves leaving Daisy confined to her special needs buggy in restaurants because the high chairs were not safe for her to sit in with her poor tone, or travelling to visit friends, we would have to lug her large, special needs chair which did not fold down and took up even more space in our full to the brim car.

Thank you for giving me another chance!

Thank you all so much, I am so delighted to be able to post that I have been selected as one of four official bloggers for the 2014 London Marathon.  I am so grateful for each and every vote, thank you so much for taking the time to vote, share my link and asking your friends and family to vote.  You have given me a great early Christmas present - the chance to combine two things that have become very important in my life in recent years - blogging and running (but not at the same time, that could be logistically a bit difficult!)

At the start of this year's London Marathon

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.