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.