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.