Daisy on Text Santa

video

Here's Daisy's story featured as part of the Text Santa appeal show which went out in the UK on Friday evening.  So proud of my little girl!

Tis the season to be jolly

Sometimes even I am taken aback by the many twists and turns of our lives.  For all of November Daisy was in Great Ormond Street where she had a major five hour surgery, central line infection and sepsis, blood transfusions, fluid resuscitation's and various ongoing bladder infections.  Once  she was stable and the hospital were not doing any more than we would do at home (which as you know is quite a lot really!), we transferred for a lovely transitional stay to our hospice, this time the one in Hampton, Shooting Star House. 

Happy to be in the ambulance transferring to Shooting Star House

Happy Birthday Daddy Pig!


Anyone who knows Daisy well will know that one of the most important things in her life is Peppa Pig, the cartoon character - in Daisy's world she is Peppa, Jules is George, I am mummy pig and Andy is Daddy Pig.  It is an absolute sign of affection if she calls you "Pig".  Andy bears a lot of similarities to Peppa's daddy - he likes to hide away and read his paper, he's not very good at keeping fit, he loves chocolate cake and he often gets things wrong which mummy pig has to sort out!!!  But most of all, Peppa loves him, just as Daisy loves her own Daddy Pig!

Here's to the geeks - because of them I'm not alone


Sir Tim Berners-Lee, Inventor of the World Wide Web


When I left university and came to London with Andy my first job was a graduate traineeship at Mercury Communications, the telephone company set up as a rival to the de-nationalised British Telecom.  I worked in various bits of the company - from the mobile phone division, to the messaging division to managing the Criminal Justice Sector Marketing for the Government Sector Division.  At this time the internet was in its early infancy and being developed and used by techie people in darkened rooms.  Not long after I joined Mercury a new Chief Executive was appointed, his name was Mike Harris - he was (and is) a real business visionary and he spearheaded a company wide programme called Imagine 97 (bearing in mind it was 1992 at the time!!!) which was focused on getting the whole company to think about the possibilities of communication and technology offered by the company five years on (and beyond).  I vividly remember the main premise was that the communications sector would grow to offer what the company called "PIE in the Palm" - People, Information and Technology in the Palm of your hand.

Extreme Multi-tasking

On Sunday I completed my last run in the challenge I had set myself earlier this year to run 7 races to mark 7 years of care by our hospice, ShootingStar-Chase for our family.  The last race in my series of runs was the Loseley 10k - a very challenging cross country run over fields, up hills and down sandy tracks - made even more challenging by the torrential rain we drove through to get there!  I was joined by my lovely boys, Theo and Jules who had been cajoled into running the 4k version of the race.  I had also agreed to give a speech to the assembled runners on the start line about the hospice and what it means for our family.  This is what I mean when I titled this post extreme multi-tasking  - really how many other people turning up for that race had had to get up several times the night before to administer pain relief to their child, disconnect her TPN, rouse the reluctant boys, battle through driving rain and closed roads then stand up and give a speech before jumping off the stage and running 10K across muddy fields????


It's all in the mind



I've been thinking more and more about mental health issues and emotional welfare over the past few months.  When you are so bogged down in the diagnosis, the medical stuff, the "just getting it all done" it's easy sometimes to forget the wider impact of what is happening.  Day in day out we take for granted the pain and discomfort Daisy goes through, the interventions she has to tolerate, the discomfort she constantly feel.  It's been part of her life and our lives for as long as she has been with us and in our determination to keep Daisy away from hospital Andy and I have become experts in many medical procedures and interventions.  When she was discharged home from the neonatal unit we soon learned how to pass a naso-gastric tube so that we could avoid midnight drips to A&E to get one passed, later we learned how to change her gastrostomy button, then when she needed TPN to survive we learned how to administer the intravenous drip and drugs that keeps her alive, change the dressings around the line, manage her ileostomy stoma and catheterise her mitrofanoff stoma into her bladder.

May the odds be ever in your favour



Those of you with teenagers will recognise this picture.  It's from the film "The Hunger Games", in a very brief nutshell it's about a group of young people who are selected to represent the place they were born to participate in an annual televised show, The Hunger Games, where they fight to survive, the ultimate survivor wins the show.  The show is manipulated, like any reality show, to make it more exciting for the audience, who are placing bets on who will live and who will die.  This scene is where Katniss, the heroine, who has managed to get away from the rest of the participants in order to keep safe, is forced to flee from safety and change her plans as the show's producers generate huge fireballs to chase her down and back into the action....

When you least expect it.....




I ran my first half marathon since 1996 yesterday.  Last time I ran a half marathon I was considerably younger and the following day I also discovered I was pregnant with our first child, Theo.  I was so pleased at my time yesterday, I exceeded my expectations and came in at 1:49:07 still feeling strong and definitely with enough mileage left in my middle-aged legs to cover the full marathon - a commitment I have agreed to take on for our hospice next year!

But something happened yesterday which hit me like a ton of bricks - a mile into my run, getting into a steady rhythm, I started to notice my fellow runners, the majority, like me, were running for charities, many had signs on their backs dedicating their run to a late mother, or father or friend.  And I was struck by the enormity of what I was doing, early that morning I had tucked the blankets around a peaceful Daisy - hooked up to her drip, with extension bags on her gastrostomy to drain bile, her ileostomy to drain faecal waste and her catheter - surrounded by her toys and books....and at that moment, a mile into the race, I wanted to stop and sit on the side of the road and sob my heart out.

The Waiting Game....




We know the waiting game well, we parents of children with additional or medical needs.  Waiting for results, waiting for appointments, waiting for confirmation, waiting for the post, waiting to see if the treatment is working, our lives are a waiting game interspersed with rushes of adrenaline when the waiting stops momentarily and before we have to move onto the next thing we are waiting for.  But the waiting never stops, there's always something that could help, that may make a difference, that will provide some support - it's part of the special parent job description "must get used to waiting".

Back to school blues...



I took a little blog holiday over the summer as you can tell, mainly because having all four children at home means there are less hours in the day to indulge myself in writing than normal.  Well the children have been back to school for a week now and I have taken up my usual Sunday evening position at the kitchen table, clean school uniform waiting to be taken upstairs and homework (allegedly) finished.

I think I have the back to school blues though, despite the little bit of daytime respite having the children in school gives me.  Back to school means back to meetings, appointments, form filling and in a couple of weeks another hospital admission for Daisy.  Back to school means back to the reality of my life, reality which was temporarily suspended over our glorious summer break.

Faster, Higher, Stronger.....

When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case.  It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.

Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.

That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school.  On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.

Take time to smell the roses

When I walk home with Jules, my 9 year old son, from school we pass a house which has roses in the front garden.  These are not the weedy, insipid offerings you see on garage forecourts, these are big, blousy, fragrant roses - the old fashioned ones I remember from my childhood.  And more often than not I stop to smell them. Just have that moment, breathing in their heady scent, before the chaos of the evening descends.




I'm a kitchen table revolutionary

I went to my first ever conference for bloggers last week. What an amazing experience to completely immerse myself in the world of blogging with hundreds of like minded women (and a sprinkling of men), hear some inspiring speakers, ask lots of questions and just have time to really think about where am I going with my writing.



Too much information?




An article appeared in the New York Times this week announcing a breakthrough in antenatal testing which is non-invasive so carries no miscarriage risk but could potentially identify up to 3,000 genetic diseases caused by gene mutations

http://www.nytimes.com/2012/06/07/health/tests-of-parents-are-used-to-map-genes-of-a-fetus.html?_r=1

At the moment antenatal screening is limited to a handful of know disorders such as Downs, or where there is an inherited risk such as Cystic Fibrosis.  The definitive test involves an invasive procedure, either amniocentesis or CVS (chorionic villus sampling) to obtain genetic material in order to establish the baby's karyotype and whether they are carrying a known genetic disease.

Genome mapping and it's applications was in its infancy when Daisy was born but within a year the mutation for Costello Syndrome had been identified and there is now a theoretical chance that babies could be diagnosed antenatally with the syndrome.  This new test also means that screening can be done for a huge range of known genetic syndromes without any risk of miscarriage. Pandora's Box has been opened....

When I was pregnant with Daisy, we were given a 1:4 chance of having a child with Downs.  We had breezed into the scan, with a family holiday booked for the end of the week and feeling like we were old hands at this pregnancy game, that's when the first of the thousands of Daisy-shaped curve balls hit us.  The consultant seemed to spend ages looking at the monitor and then made an excuse to leave the room, when he came back it was with a Nurse - we now know she is the nurse specialist for Fetal Medicine and that's when we were told that our chances of having a baby with Downs were 1 in 4.  And all that was mentioned was Downs, or at least that's what we heard, we went home and I googled and read and tried to remind myself that 1 in 4 meant that the odds were still in our favour (just!).

Trying to keep my head, when all around me are losing theirs.....



Daisy had another hospital stay this week, another surgery, another anaesthetic.  She had to have her Hickman line (the central line tunnelled into a main vein which rests near her heart) removed and a new one place in a new vein as the old one had been repaired once and was at risk of breaking and also was colonised with bugs which we were just about keeping under control but which could have caused sepsis at any time.

I'm losing count but by my reckoning that's 9 central lines she has had in her life (with the scars of insertions and removals crisscrossing her chest and neck to prove it) and close on 60 anaesthetics for various surgeries and procedure.....more than the majority of the human population will experience in their lifetime.

Spontaneous Planning

We are at the end of another half term and have made it through in one piece.  I am so grateful for every school holiday we get to spend together because we have lost so much family time over the years. This time of normality has also shown us how different our lives in the real world are as we try to function as a family, this week provided many examples and made me realise that what I am constantly trying to do is spontaneously plan in order to do the normal childhood stuff other families take for granted.

It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.



Volunteering - it's a two way street

Not many people know this, and I don't really talk about it (not because I don't want to, I guess talking about my family takes up most of my time!) but in what minimal spare time I have in my life I am a leader of a Girl Guide Unit.

Some of you may be new to this blog and not realise how little spare time I actually have,  if you read some of the old posts and the All about me link the you will see that my life is very full on and spare time is something of a premium in my world.  But being involved in Girl Guiding is something very important to me and so I make time for it.

Actually, thinking about it my experience as a Girl Guide has really shaped a lot of my approach to life although maybe I didn't know it at the time.  Like many women my age I was a Brownie (no Rainbows in my day) and once I turned 10 I moved up to Guides.  Those who know me well will not be surprised to learn that I embraced everything about Guiding, I did every badge I could, I entered every competition, I read my Guiding Handbook from cover to cover and I achieved the ultimate Guiding accolade - The Queen's Guide Award.


Yes, I have kept my old Guide uniform!

I have Costello Syndrome, Costello Syndrome does not have me

I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me".  That really inspired me.

If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.

Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.

How I got my groove back



In a couple of weeks I will be 44


Yes - hard to believe isn't it!!!  I don't know what I imagined my life to be like at 44 but there are a lot of things I did not expect it to be like. While I knew I would proably have more than the average number of children, I did not expect to have two with additional needs.  I expected to start slowing down, not speeding up, I did not expect to be still changing nappies or carrying children around or making up milk feeds, I certainly did not expect to be performing the sort of medical procedures that I do day in day out, or needing the mental agility required to defuse an autistic meltdown before it becomes full strength, I expected to be working part time and reducing my hours, not working all the hours god sends for no money, I definitely expected to have slightly more disposable income ....

Throwing starfish into the ocean.....




I bought myself this necklace this week, I had just picked Daisy up from an overnight respite stay at Shooting Star Chase and dropped her off to school and I was in town picking up some bits I needed when I saw this necklace in a window, and I had to have it.
It wasn't that I wanted to treat myself to something pretty, it was the starfish that drew my attention.  I have always loved starfish, they have a special significance in my life.  I remember happy family holidays on the Gower Peninsula in Wales rockpooling with my Dad and finding starfish and anenomes and sea urchins and taking our sea treasure home to look up the names and species in my Spotters Guide to Wildlife Book.

You are beautiful, no matter what they say...




I'm not really the biggest fan of Christina Aguilera but her song Beautiful has very special significance for me.  When Daisy was born she was immediately transferred to the neonatal unit at our hospital.  There was always a radio playing in the background during the long weeks she stayed in the unit, when she arrived it was just before Christmas and the soundtrack to those early days was all the festive favourites, but as the days wore on and the Christmas season passed (and the tree outside her window began to grow leaves) the songs were replaced with the regular mix that is endlessly played on Magic FM, London's easy listening station.  And this song seemed to be on a lot....

"You are beautiful, in every single way, words can't bring you down..."

A Good Day

Yesterday was a good day, not anticipated to be as it involved several appointments at Great Ormond Street.  As we live in London, albeit in the suburbs, our appointments tend to be scheduled for later in the afternoon, however anyone who knows London traffic knows that it's often easier to drive out of London than to drive around London.

Having picked Daisy up from her school it then took me 90 minutes to drive the 14 miles from school to hospital, 90 minutes of roadworks, delays and diversions with a little girl in the back of the car who doesn't like to sit still for too long and no-one else to entertain her.  The only CD in the car suitable for Daisy was the Singing Hands Christmas CD so on a rainy May afternoon, stuck in gridlocked London traffic Daisy and I sang and signed Christmas songs - shall we refer to it as a little seasonal rebellion rather than the actions of a desparate mother?

Of course once I drove around and around the streets of Bloomsbury looking for a place to park which the ever vigilant Camden Council parking posse would approve of, I was late for our first appointment.  This was with our Stoma nurse, a very important appointment as with four stomas Daisy needs a lot of help from nurse specialists.  I was even a bit late for the second appointment but I always assume the clinic is running late (normally delayed by parents with me with a list of questions) so it wasn't too bad.  Appointment two was Orthotics.

This be the Verse....




I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...




It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...

A letter to my son.....



A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.


The result has been an autism positivity flashblog, going out today, 30th April, where bloggers who write about autism and aspergers write a post which hopefully anyone googling "I Wish I Didn't Have Aspergers" would find support and encouragement from a whole community of people who understand, or are trying to understand...

"I wish I didn't have aspergers" is something I guess my son has said,or thought, or googled at some time so I thought I would write the letter that I would want him to see if he felt so low that he had to type in those words to see what came up...

Dear Theo

I remember when you were born, our first child, our boy, our son. We were filled with hopes and dreams for you, Daddy wanted you to be an Arsenal Striker, Fighter Pilot and Doctor all rolled into one (it's OK, he wasn't serious, well maybe not about the fighter pilot bit...). But what we wanted most for you was to be yourself.

Why do I do it?

So why do I write this blog and bare my soul to thousands of strangers week in week out?

I was pondering this following a recent thread on the Mumsnet Site and have found myself looking back over some of my old posts over the past week or so. It's only really in the past 6 months or so that I have actually "come out" as a blogger within the blogging community, although the reality is I have been writing for years.  I wrote my first  post on the 1st January 2007 for an earlier blog I had started but my serious, regular blogging began late in 2008 when our lives reached another turning point with Daisy.

Prior to that time, Daisy's life was following a "typical" Costello Syndrome course - lots of hospital stays and already she had undergone several surgeries, but my old blog was already documenting our worries about Daisy's gastrointestinal issue and the lack of either improvement or stability which is normally seen in the syndrome.  Similarly, Theo, our oldest son,  was on the gifted and talented programme in his junior school and we smiled at his quirks and obsessions putting them all down to the fact that he was so bright and his anxieties we blamed on being the eldest of four.  We had no inkling of what was to come.  A pivotal point in our life with Daisy, which was already complicated came in September 2008 when she was rushed into hospital with yet another infection and then soon after transferred to Great Ormond Street hospital where she started Total Parenteral Nutrition, the system of delivering nutrients directly into the bloodstream when the gastrointestinal system becomes unfeedable.  It was at this point I began to blog in earnest, here is the the first post I ever wrote for Was this in the Plan? My first blog post

Carers - no time to complain




There is very much a theme about the role of carers going on in blog land this weekend with two fellow bloggers inviting posts to highlight life as a carer.  The timing was great for me as this weekend I'm on my own, Andy is away working in the States and I am at home with all four children.

This is hard work.   Today I have changed 7 stoma bags, 1 catheter, I have given two intravenous medications, disconnected an intravenous drip, put a new drip up, administered countless enteral drugs, carried my daughter upstairs in order to bath her and then carried her downstairs to her bedroom and the list goes on...Factor into this the needs of the three other children then preparing meals, laundry, shopping, homework, there is very little time left for me.  I survive on coffee and chocolate and the children's left overs.  It's why I go running, it actually gives me a break and I'm itching to get out running this weekend but can't because I'm on my own and Daisy cannot be left with anyone other than a trained carer, and that's only when she doesn't have her TPN running (when her drip is connected she can only be left with Andy or I or a qualified nurse).

Mixed Emotions

Well we are back from holiday and survived intact - just.  Daisy as always continues to amaze us with her resilience, courage and positive outlook against all the odds.  She loved being on holiday, she loved the ferry and our little cabin, she loved the apartment, the beach, the places we visited, just being with her family but most of all she loved sleeping in a little bed next to her Mummy & Daddy - that was the most exciting thing for her, to be able to reach over in the middle of the night, tweak the duvet and tell me that she is Peppa Pig on holiday!!!

We are so proud of how Daisy adapts to new situations and takes it all in her stride.  Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.

For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea.  Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns.  Not good in the confines of a small apartment!

A Military Operation

We are going on holiday, a real family holiday.  This will be the first holiday in a long time.  We have been very fortunate to have two holidays in the last few years but both of these were through two amazing charities Caudwell Children and Torbay Holiday Helpers Network.  These were supported holidays with organised trips, support and back up, we didn't have to do too much thinking or planning and there was the constant reassurance that there were people around to help us if things went pear shaped.  This holiday is a normal, family, self-catering, travelling by ferry, week in France - eeeeekkkk!

We love France, we love the beach, we need to get away, so a few months ago we started working on how we could manage a family trip across the channel.  The first thing was insurance.  OK so it's France, it's hardly the other side of the world, and theoretically our European Health Insurance Card would cover any medical treatment Daisy or the rest of the family would need.  Yes - theoretically, until you start thinking about scenarios...so, what if we have booked our ferries and are unable to travel because Daisy is unwell, we cannot afford to lose several hundred pounds.  What if she has a line infection or septic episode while we are away, well yes she could receive treatment in a French hospital but if she needed a new line then she is tricky to anaesthetise, she has had numerous line insertions and can only really have new lines fitted by the Interventional Radiology Consultant at Great Ormond Street..what if, what if..... When we started going through the scenarios, good travel insurance is essential.  While we do as much as possible to minimise the risk, there are so many elements to Daisy's health that are out of our hands.

The right to be heard

Article 12 (Respect for the views of the child): When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account. (UN Convention on the Rights of the Child)



Daisy is constantly telling us about what is going on in her life, asking us to read books, singing, asking questions...she never stops.  Her mind is on the go all the time with all the things she experiences during the day at school, at home and out and about.  Yet Daisy doesn't speak - over the past few months she has been vocalising more and more and she clearly uses more and more words but for Daisy her main form of communication is through signing.  Her hands never stop, even in her sleep.  And when she is tired or unwell and cannot find the strength to vocalise her hands tell us what she needs.

This was a very early lesson we learned with Daisy - communication is not about speaking,  just because she cannot speak, does not mean she cannot communicate with us.  And it also does not mean that she should be denied the opportunity to voice her own opinion.

Costello Syndrome Curve Ball

Daisy has Costello Syndrome -  a very rare genetic syndrome with around 250 reported cases worldwide.  It's caused by a sporadic mutation of an oncogene. An oncogene is a gene that causes cancer, children with Costello Syndrome have a 15% increased risk of developing cancerous tumours, we live with this risk every day.  This week Daisy nearly became one of the costello statistics.

We have been concerned for a long while that we might have been missing something with the pain Daisy gets from her bladder and abdomen, the protocol for children with Costello Syndrome is that they should have regular ultrasounds to check for tumours, and with any unexplained pain or lumps there should be a high index of suspicion for tumour development.  So last Tuesday I took Daisy along for her screening ultrasound to our local hospital, Theo was off school that day, recovering from one of his migraines so I brought him along too to distract her.

We call ultrasounds "jelly on the belly" and over the years Daisy has had hundreds of them and is very used to them, we go along to outpatients,  say hello to the staff and hope to see the nurse we always refer to as "JennyfromXray", we have a picture of Jennyfromxray with Daisy as she had her first ever ultrasound at only a couple of days old.

The Adapted Family

I'm participating in the Define Normal Blog Hop this week where the challenge has been given to us special  needs mums to define what we consider normal in our lives and embrace the things that make us different to other families.

I was thinking about this and started remembering stuff I learned a long (very long) time ago at University when I was an undergrad studying Social Anthropology.  My interest was specifically how peoples adapt to their environment and how communities evolve to take into account the external influences of their environment.  For those of you who are curious, my dissertation was on the significance of the Potlatch Ceremony among the Kwakiutl peoples of the Pacific North West....but that is all another world away..

So I was musing on the blog hop topic, which focuses on the things we take for granted as special needs families which may be perceived as weird or odd in the wider world and I realised that what we all do is adapt, what actually is "normal" anway?  The only thing that is actually normal is a cycle on the washing machine... we have all adapted to fit our own influences that shape our family.  Things that I take for granted like putting a tube into my daughter's tummy to empty her bladder are clearly a bit away from the norm for any 7 year old, but we have adapted our lives to accept that if she is going to avoid urine infections this is what we need to do.  The normal for us is that way because our family has adapted to survive as a unit around the demands of the needs of the individuals in it.  We all do what works for our family unit, regardless of whether or not there are additional needs.

A different operating system


The quote above appeared on facebook a few weeks ago and for me it was a eureka moment, it encapsulated what life is like for a person with Autistic Spectrum Disorder, a person like my son, Theo.  In a moment I realised  what I had been struggling to articulate, that Theo is a Mac and the rest of us are PCs and we are trying to operate a Mac like you operate a PC....and if you are not familiar with these two operating systems it's like trying to manually change gear in an automatic car or speak French in Germany...you get my drift.  In other words the normal (what we perceive to be normal) rules do not apply.  When you have a child with Aspergers, many of the normal rules of parenting don't apply and you have to revisit how to parent in a way that can sometimes completely go against your instinct......

This Mother's Day I will be mostly.........

.....running a 10K race around the country lanes of the Vale of Glamorgan.  In fact over the course of 2012 I will be running 7 races of lengths between 10k and half marathon.  So why having blogged last week that I have very little spare time am I planning to spend some of it with thousands of other people pounding the streets of the UK?

When Daisy was 6 months old we already knew that her life was limited and that the future with her was uncertain, at that time she had just finished her first long stay at Great Ormond Street having been ventilated for respiratory problems, diagnosed with cardiomyopathy, found to be partially blind and extensively tested to eliminate cancer as being the cause of her pain and constant discomfort.  With no family nearby and three other children under the age of 7 to say we were struggling was an understatement.  Daisy's neonatologist referred her to our local hospice, Shooting Star Chase and from that time on we were no longer alone.

A few pics to brighten the blog!


With big brother Jules enjoying the snow


Determined to take Mickey Mouse sledging!



Opening a present from the wonderful PostPals charity
(note the Singing Hands Tshirt - her favourite item of clothing!!!)



At Shooting Star Chase for the Day - shiny and clean after a lovely bath!

Not Waving But Drowning



Yes, I am still here, I know that it's been a while since I updated but as you can guess from the title of this blog, life has just been a bit too overwhelming to find the time/motivation/energy to fire up the laptop and write about it, but I think I have my blogging mojo back and in the interests of ensuring that the world understands what it is like for families like ours it's time to pick myself up and get the words down..

I hardly dare to write this but it's been two months since Daisy's last emergency hospital admission.  Two months where well meaning people who don't know my world equate no hospital stays with Daisy being well.  If only this was the case, no hospital stays are because every day is a battle for us to keep her out of hospital. Not being in hospital does not mean that she is better, it means that bar a life threatening emergency there is nothing else they can do for her.  And actually the definition of life threatening emergency seems to be stretching a bit now, a couple of years ago we had to take Daisy to hospital if she spiked a temp or had positive cultures, now we judge whether this is a "manage at home" situation or a "call 999" one.  The last admission was for intravenous pain relief but since then Daisy has been on various intravenous antibiotics at home to manage various bacteria which colonise the bits of plastic in her body. Now together with the TPN drip we put up every night and which provides her nutrition into her blood stream, we also draw up at least one antibiotic - a few weeks ago it was meropenem, now it's augmentin, IV antifungals are being mentioned too.....in addition to this, because of her worsening foregut motility and severe reflux (we are not talking vomiting here, we are talking gut renching, blue in the face wretching and projectile vomiting of luminous yellow bile...) we also administer anti-reflux medication intravenously.  Drawing up an IV is not like pouring out a medicine, each iv has it's own way of being prepared - some (if we are really really lucky!) are ready mixed, most need mixing with something else - saline, water or some other solvent.  They need to be drawn up, measured, air bubbles dispersed and administered.  Sometimes as a slow push, sometimes as an infusion via a pump and always with a saline flush between each medication.  So another compromise we have had to make to keep Daisy out of hospital and with her family is to add intravenous medication into our daily routine.  But it is working and she is definitely better on IVs than she was off them.  It's just sometimes it would be nice just to be Daisy's mum, sometimes it would be nice to say "tell you what let's not bother with putting the TPN on tonight, let's go out to the park instead", sometimes it would be nice not to have to change her catheter knowing it's going to make her cry or drag her away from her toys to change her stoma bag because the contents are leaking all over her clothes and burning her already sore skin....sometime there are so many things I would like to do rather than be Daisy's nurse but this is the pact that we have made...for Daisy to be here with us, for Daisy to be enjoying life then this is how it needs to be.

It's just sometimes when I have a brief moment and allow myself the really think about the enormity of the situation I realise how unfair it is, on Daisy, on us, on her siblings.  Why does she have to have this rare, sporadic syndrome?  It's nothing to do with one of us carrying a rogue gene, or our age or race, just one of those, chance in a million (make that 28 million) occurences that could have happened to any of you.  So why then having this dodgy gene mutation does she then have to have intestinal failure meaning that she relies of chemicals and machines and plastic to live and then the final cruel blow - why does her bladder then decide that it's going to join the party too?  That's just not fair.

It's the ripple effect that's tough too - Daisy has three siblings.  These four children have one shot at childhood and while we constantly tell them there is no such thing as a normal family, a perfect life, I feel guilty at how sometimes I rely on their help as I change stoma bags and catheters and run through TPN when there is no other adult around to help me.  Ask any of my children about TPN, Hickman Lines, Mitrofanoff stomas, gastrostomies and jejenostomies and they will confidently tell you all about them, probably more confidently than a junior doctor.  They seem oblivious to the physical manifesations of Daisy's disease and see her simply as their sister and she in turn has them completely and utterly wrapped around her little finger.  Daisy rules the roost at our house, and given her larger than life personality I think she would still rule the roost despite all her medical problems.

But for all of us, while we present a facade of coping those feelings of drowning are bubbling under.  All three of my older children are receiving emotional support - one from CAMHS (child & adolescent mental health services) , two from the hospice and young carers groups.  Andy and I attend counselling sessions.  These sessions have given me time to reflect and take stock and think about me and what's important.  I felt that because I am intelligent, articulate, willing but I think above all, so desparate to have Daisy at home and keep the family together, I was being laden with more and more work and responsibility and risk to manage this.  I felt like I had been thrown into a lifeboat with a load of supplies and set adrift left to fend for myself while everyone waves from the land.  But the thing is, I am not waving, I am drowning - I am drowning under the overwhelming workload that comes with looking after a chronically sick child, trying to be there for the other children and listen to their problems, trying not to get angry with Theo's asperger's outbursts and meltdowns and reminding myself it's not him, it's the autism, drowing under the paperwork and bureaucracy that comes with my world.....and it seems to me that the more that the world thinks you are coping, the less likely it is to check if you really are.

So when I stood back after a recent long, all day appointment at Great Ormond Street and took stock of all the addtional meds and IVs that we were being asked to add in to our already packed daily routine and I had an epiphany and I realised I could just say no.  So I did.  It was not about putting Daisy at risk, it was about ensuring that overloading me (because remember it is mainly me, Andy works long long hours to keep a roof over our head) did not put Daisy at risk.  This was a really liberating feeling because suddenly the wheels of support starting to turn and a better, more manageable plan was formed, a plan that could be managed at home taking into account the workload and Daisy's needs.  Since that time I have been on a bit of a roll, realising that I don't have to do it all.  I have stood back and taken a look at my life and what is important, for me the most important thing is my family and my marriage.  Since having Daisy I have gradually acquired other projects and interests to take the place of the career that I had to give up when she was born, these things have started to take up more and more of my time away from the family and I have realised this is not what I want, so taking advice from the great Homer Simpson I have asked myself "Can't somebody else do it?" and I have discovered that I am not infallible, the world will not fall apart if I withdraw myself from a voluntary group or committee, there will always be enthusiastic souls like me who are happy to take on more than the lion's share of service to the community!

I have not given everything up though, I have made room in my life for something that is just for me, long distance running.  I have run on and off since I was twelve, I ran a marathon at 13.  I may not be fast but I have the mental and physical stamina which ensures that I can run and run.  And recently this is what I have been doing, I plug in my music and run, morning, evening, it does not matter, running is my prozac, it's my time out away from everything where I can meditate to the repetitive rhythm and escape into music and thoughts.  Running keeps me physically and mentally strong to keep going, because I have realised that life with Daisy is not a sprint, it's not a marathon, it's an ultra marathon, iron man, triathlon, decathlon endurance event and she, and the rest of the family, needs me to be up to the challenge.

So I have regained my mojo and with it normal (maybe a bit more streamlined and focussed) service has resumed.

It could be you

So how did I come to this point in my life where I made a shift from wage slave to benefit scrounger?

Up until November 2004 I had a full time marketing career, I had degree and a master's under my belt together with professional qualifications and memberships. I had travelled the world with work, managed multi-million pound budgets and had either worked for or manged the accounts of some heavy weight, blue chip companies.  The role I was in by November 2004 was supposed to be my "slowing down, being more close to home" job - I was head of Marketing and Student Support for a Further Education College.  The plan had been to take some maternity leave then return on a part-time basis, in time for the college's busiest time of the year, Student Enrolment.

I loved working, I loved the sense of identity and purpose it gave me, I loved being part of a team and being appreciated for a job well done.  I enjoyed dressing in "corporate" clothes, receiving my pay slip at the end of the month (even though a huge chunk of it always seemed to go on childcare!), putting my education and training into practice but most importantly it was great to leave it all behind at the end of the day and go home (well, when I wasn't travelling).  I was not ashamed to admit that going to work was a bit of a cop out, I was not cut out to be a stay at home mum.

I had a stereotypical view of people who claimed benefits  - I wanted to show my children that you could have it all, career and family and that an education was worth pursuing as it led to wonderful rewards.  I knew nothing of the world of disability, illness, hospices - except for once a year when Comic Relief and Children in Need was on the TV, at which point I would get my credit card out a pledge some money and think nothing more of it.

So November 2004, when I was 29 weeks pregnant with our fourth (and much wanted) child and second daughter, I had no idea how my world was going to change so dramatically and so permanently.  Being my fourth child I had a good idea when things did not feel right in pregnancy, I was being monitored for polyhydroamnios and I was now looking like a woman who was full term with twins, I was huge.  I wandered into my ante-natal clinic which happened to be on the way home from work and that's when my life changed.  I was admitted straight away. given steroids to strengthen the baby's lungs, and had several amnioreduction procedures to try and minimise the risk of pre-term labour.  As it was Daisy was delivered by c-section (a normal labour was deemed too risky as all three previous ones had been very long - and very natural!) at 33 weeks, three days before Christmas.  I spent Christmas in hospital, Daisy was in intensive care and poor Andy was at home 7,5 & 2 year old children.  I remember shuffling into the neonatal unit on Boxing day, clutching my meagre bottle of expressed milk to see the staff gathered around a TV watching coverage of the asian tsunami - and I wondered what had happened to the world, to my world...

Needless to say, despite optimistic plans and strategies I never did return to work and with a heavy heart I handed in my notice so that the college could get on with recruiting a replacement.  The world as I knew it had changed; after two months in neonates, Daisy did come home for a few (very fraught) weeks before being rushed up to Great Ormond Street Hospital at four months old for investigations for a possible tumour. She ended up staying there for three months during which time she visited intensive care with respiratory failure, had the first four of many general anaesthetics, was diagnosed with heart problems, a severe visual impairment and failure to thrive.  They did not find a tumour and we know know in hindsight the agony she was in and the symptoms she displayed were down to rare nerve disorder, probably completely separate to her overall diagnosis of Costello Syndrome,  in her gastro-intestinal system which meant that every drop of milk we were trying to force into her caused her huge pain.

We soldiered on for a few years, we embraced the diagnosis of Costello Syndrome, we even manage to attend the syndrome conference in Portland, Oregon.  I thought of ways I could get back to work in between the hospital stays, when we were lulled into a false sense of security as we managed a few months out of hospital and on a reasonably even keel.  We struggled financially on one income, but always in the back of my mind I thought this was a temporary situation and I thought that Daisy, like the other children with Costello Syndrome we had met would eventually stabilise enough for me to freelance occasionally or go back to college to train as a teacher.  I even started an application for a part time teacher training course..

Again, we had a turning point in our life with Daisy - September 2008, when after a difficult summer as she  struggled with pain and weight gain and only a week into starting school (and Theo just starting high school) she became unwell and we had to rush her to A&E for what we thought would be another few days of vomiting, fluids and then she would pick up.  But she did not pick up, she got worse and worse and eventually on being transferred to GOS and having upper and lower scopes she was found to have severe and agressive inflammatory bowel disease, we know now probably caused by the severed dysmotility and repeated attempts to feed her, and in November 2008 she started TPN and left hospital nearly 12 months after first being taken to A&E.

With TPN and Daisy's subsequent deterioration our lives, already changed, changed immeasurably.  There was not turning back, no hope for recovery, no part time work or college course.  During one of our long hospital stays Andy was made redundant and the unthinkable happened - we were both out of work, with four children, one of whom was needing 24 hour care.  Tax credits to supplement the carers allowance and Disabilyt Living Allowance were an essential part of our lives.

Andy and I would have driven eachother mad being at home together all day, so now he runs a very successful consultancy business.  This allows him some flexibility to fit around Daisy's medical needs, but most of the time I go to hospital appointments, clinics, procedures on my own as he has to work.  My full time job is Daisy and the three other children.  And it seems to me that with each year my job description keeps expanding and yet I receive minimal remuneration for it - I am now qualified to access a central line (many nurses will not/are not able to do this), I can catheterise a mitrofanoff stoma, change a stoma bag, replace a jejenostomy and gastrostomy button, I am fairly proficient in makaton sign language, I can administer intravenous antibiotics, make judgements on types of pain relief analgesia required.  And when I am not doing all those things I am checking stock levels of all the equipment and ancilliaries needed to run our mini hospital room, washing copious amounts of bedding after nights Daisy has spent vomiting or with a leaking stoma bag, cleaning, tidying, lugging heavy wheelchairs into the back of a car followed by lifting a 20kg child and various bags and attachments!  I did not anticipate the new languages I would have to learn - carefully choosing my words when I make requests of social services versus healthcare because using a word such as "respite" with the wrong person may just come back with the answer "that's someone elses budget".  I have had to become au fait with the world of statements and special education, and not just for Daisy - just incase I become too complacement I have another child with additional needs that can take me away from the day job of just being a mum - Asperger's and everything that comes with that syndrome has taken over our lives also.

I am a different person to the career woman I was 7 years ago, I have been to the edge I guess and seen another world and it really does put things into perspective.  I value what I do immensely, this is the most important, rewarding, bone-achingly tiring job I have ever had to do.  It's manual labour, intellectually challenging, goalpost moving, unrelenting, 24/7 slog.  This is not just about being a mum plus, this is about being a nurse, an advocate, a housekeeper, politician and diplomat......I get thanks and appreciation from my family and friends,  I know I am contributing to society, I am an essential component in the social and health care system, without me doing what I do the cost to the taxpayer would be huge as Daisy would need full time, funded specialist medical care in a residential setting. 

My reward is to see my children achieve and grow, I truly believe that the reason Daisy continues to live to fight another day is down to the skills and effort Andy and I have put in to make that happen.  But does our society value what I do?  I am dependent on tax credits and carers allowance, all £55.55 per week of it.  Andy works, sometimes I envy him that opportunity to escape into the corporate world and switch off.  I would love to put my new skills to use, now I google part time nursing degrees and daydream about becoming a Gastrointestinal Nurse Specialist......

This is why I write this blog, so that hopefully by sharing a bit of our lives people will understand our world and look beyond theirs.  We all walk such a fine line, we are all just a faulty gene, a birth defect, an accident or a chance happening away from entering a world like mine.
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