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

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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