Merry Christmas

Merry Christmas everyone.  We have had a hectic few days celebrating Daisy's 9th (yes, can you believe it 9 years old!) birthday and preparing for Christmas.  Here's a beautiful picture of us all meeting Santa in Harrods on her birthday.

Life is pretty tough with lots of seizures, intravenous medications and an ever increasing workload but moments like this and the chance to celebrate another year with Daisy make it all worthwhile.

Wherever you are, thank you for reading my blog and sharing my journey  - have a peaceful and relaxing festive season.

Steph & Family xxx

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

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!)

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 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.

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

The unwelcome house guest

A stranger turned up here a few months ago, we hoped they would be a passing house guest but it appears they have taken up residence and turned our home upside down.

Daisy has epilepsy and epilepsy has us in it's grips.  It's turned our world upside down and when we thought things really could not become more complicated, they did.

This is the house guest you loathe, some of our others, like TPN and Catheters and Stomas, we've grown to accept and they have become part of our lives, fitting in to our routine so that we were able to have some sort of an existence.  But epilepsy is anti-social, seizures come without warning, they disrupt plans, throw you off guard and turn you into a gibbering wreck.  When Daisy had her first few seizures a good friend wrote to me and said that she could cope with all the issues her daughter faced but the epilepsy was the thing that had tipped her over the edge.

The Sad Book

I have a thing for cemeteries - it's back to that old anthropology training again I guess, but a visit to an old cemetery in the UK tells you so much about social history. Living in London we have some amazing cemeteries on our doorstep, particularly the Magnificent Seven - a group of Seven urban cemeteries built by the Victorians, sprawling gothic burial grounds for the great and good of society.

So far I have visited three of the seven, West Norwood, Old Brompton and last week, Highgate - last resting place of Karl Marx and Malcolm Maclaren.

I also discovered it is the burial place for the writer Douglas Adams, a collection of pens at the foot of his headstone and reading glasses ontop of it (people do that sort of thing, Oscar Wilde's Headstone at Pere Lachaise in Paris is covered in lipstick kisses from adoring pilgrims).  Next to Douglas' headstone there is a smaller, rougher stone with the words "Eddie Steele Rosen" .

Sometimes Pollyanna can take a hike

Pollyanna is a character from a children's book, her name has become a popular term for someone with an optimistic outlook on life.  In the book Pollyanna gets through her misfortunes by playing the "Glad Game" - always finding the positive in everything in life and finding the glad in every situation.

99% of the time I am a Pollyanna - in fact my ability to see the positive in every situation is irritating even to me at times

Another milestone ticked off

The day Daisy was born she was stabilised and then rushed to the neonatal intensive care unit, not knowing what the future held I asked our local priest to come and baptise her on that day, a sort of holy insurance policy...

When she came home two months later we held a blessing service for her on the same weekend as her big brother's Holy Communion, so it was an excuse of a big party to welcome Daisy to the world and to mark Theo's transition from his baby years as he grew up.

Having studied Anthropology at University, I have always been a big fan of these rites of passage, marking transitions into various life stages - being catholic helps as we do ceremonies like this pretty well.

I didn't dare hope that one day I would be able to see Daisy make her First Holy Communion, so much has gone on in her life since her arrival in the world it seemed a distant goal.  But today, with the odds as always stacked against her, loaded up with intravenous pain relief and anti-seizure medication I am able to say that ALL my children have now make their Holy Communion.

Learning a new vocabulary

Over the years we have added to and expanded our vocabulary of medical and special needs terms - in the early days it was the language of NICU (neonatal intensive care unit) with NG feeding, cpap, jaundice and corrected age creeping into our conversations, then it was genetics speak, then Costello Syndrome speak and before long we found ourselves holding our own with Daisy's doctors as we spoke about gut inflammation, fluid balances, neuropathies and myopathies, stomas, catheters and TPN.  You know you're an intestinal/bladder failure parent when you know all the reference ranges for your child's main blood tests, or you start photographing the different shades of bile that they produce from their free drainage, or when you get excited because their fluid balance chart adds up!

A tale of 3 Marathons (The Postscript)

I am now the proud owner of 3 marathon medals, the newest and the shiniest is my medal for the 2013 Virgin London Marathon which I completed in 4 hours and 19 seconds - darn you unravelled shoelaces, you cost me a sub four!!!  In fact my garmin watch does tell me that I completed the marathon distance in 3 hours and 58 seconds but weaving in and out of other runners adds precious inches to that distance.

A tale of 3 Marathons

For those of you who don't know, on Sunday 21 April I will be joining 35, 0000 other people in running the Virgin London Marathon 2013.

If you follow this blog you will know that I returned to running in January last year, joining my local club, Wimbledon Windmilers and taking on the challenge to run 7 races to mark the 7 years of care our family have received from our wonderful hospice, ShootingStar-Chase.  You can read more about this here This Mother's Day I will be mostly... and here Fundraising for our Hospice.

Why vaccination is a no brainer for me

There is currently a measles epidemic in South Wales.  Measles epidemic?  A disease that was almost eradicated in the UK? But we have a UK wide vaccination programme - how can it be possible?

How can it be that  the UK had the second highest number of measles cases in Europe last year with 1,902 confirmed cases  not including the new cases in South Wales?  (The European total was 8,230).

It seems in the UK we are still paying the price for the scaremongering caused by the flawed "research" by Andrew Wakefield claiming a link between the MMR Jab & autism. His hypothesis is that he found a new form of bowel disease that was only present in autistic children and he linked this to the MMR jab.   And so he opened Pandora's Box as parents made the connection between MMR and Autism, despite the original Wakefield report being shown to be completely flawed, the author to have multiple conflicts of interest and to have manipulated evidence, despite Andrew Wakefield being struck off the Medical Register by the General Medical Council. Despite multiple studies which showed no link between the MMR vaccine and autism the seed of doubt had been sown in the minds of otherwise intelligent people.

What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.

Engage brain before opening mouth

I am very fortunate as I can probably count on the fingers of one hand the times when someone has said something negative to my face about Daisy, and even those times the intention was not spiteful, it was more a case of the person who made the comment not thinking it through and quite clearly being from a different value set to me.  Like the nurse, who in the middle of the night, as she brought in yet another IV for a screaming Daisy, turned to me and said, in a very matter of fact way "do you ever think that Daisy just shouldn't have been here..."

Life in the SEN Pinball Machine

Just blowing the dust and cobwebs off the blog before I begin..... not only has my trusty laptop failed me and just like in the early months of this blog I am reduced to borrowing my son's computer, I am also just about emerging battered and bruised from what can only be described a rocky start to 2013.

Life is never going to be easy parenting four children, especially when two of them require additional attention but when you are also battling the system to get your children the support and help you need then reserves run dry very quickly.

Just keep swimming........

Those readers who have followed my blog for a while know that sometimes I drop off the blogging radar, mainly because of workload at home or sometimes because I have lost my blogging mojo.  I guess the last few weeks has been a combination of the two.  Poor Andy still has his arm in plaster following a (non-alcohol related) fall the day after his 50th birthday, and this has meant my workload has gone sky high as a broken