I wish someone had told me........

While having a quick tea break in the parent's kitchen today I got talking to the mum from the next door cubicle, recently arrived with a newborn baby.  As we chatted I realised that I could have been talking to the person I was nearly 7 years ago when I arrived at this hospital with a tiny baby and a whole load of question marks and worries about how her life would pan out, she too has 3 other children, similar ages to my children when Daisy was born (&, 5 & 2) and as we talked  and she shared her thoughts I realised I was telling her all the things I wish someone had told me all those years ago.....

So for the benefit of anyone else embarking on this journey of hospitals, disability and caring here are the things I want you to know -

  • Allow yourself to grieve - mourn the child you thought you would have, adjust to the child you now have and find a love for that child that you never thought possible

  • Worry about the future if you must but learn to go with the flow and live for the moment, as time goes on you will stop fighting the things you can't change and only focus on the things you can influence, you will find that you can live in the moment and gain perspective. 

  • Don't be afraid to accept help or ask for help.  That was the hardest thing we had to do, we saw it as an admission of failure, that we could not look after our own child, it is not.

  • Remember that you are your child's mother - when your child has complex medical needs and you spend so much time in hospital you become medicalised and institutionalised and bogged down in numbers, values, rates, ranges, results - monitor these things if you must but remember that your mother's instinct has never failed you yet

  • Look after yourself, if you fall apart you are no good to anyone.  I am determined not to turn into one of those women you see at the front of the hospital dragging on a cigarette, still wearing their pyjamas after lunch time - I dress, do my hair, stick on some lippy ready to face the day.  I go out for a walk every day, I drink skinny lattes and read the paper......do whatever is necessary to keep body and soul together through the stress

  • There is no such thing as the perfect family.  Look around you, the families you think are perfect, are not .
  • Your other children will get through this.  I felt so guilty that I had ruined the other three children's lives, I have not.  It's not what we planned for them but we hope that their lives have been enhanced.  They are more caring, they are more independent, they have had a varied range of life experiences already.  Yes it is really really tough on them having to be parented by rota or having plans cancelled at the last minute by their little sister's major spanners in the works, but they will survive and as Theo's play therapist once said to me " this is just how it is, no-one's life is perfect (see above)".  I truly believe they will be better people for it.

  • You will worry about money then you will discover what is important, you will stop sweating the small stuff and things will start to fall into perspective and with some careful planning and management you will survive the practicalities of this new life

  • Make lists, write things down, ask questions but don't always expect answers, know when to stop asking and just to live in the moment

  • Know that you are not indispensible - your child needs to be independent from you more than any other child. Your job as a parent is to prepare your child for the big bad world, when you have a child with additional needs - whether they are medical, physical or a learning disability (or in Daisy's case all three), this job starts on day one.  Leave them with a carer, leave the ward occassionally so they know you will come back, teach them independence, help them learn confidence and to be their own person.

  • You will have a life again, the extremes will be great, the moments of happiness will be concentrated into smaller timescales but you will apppreciate them so much more

  • You will meet people, go to places, experience things that your old life will never ever have introduced you to.

  • There will always be someone worse off than you, be there for them, people will be there for you

  • Savour every single day with your child, you do not know what tomorrow will bring.....

Is respite a right or a privilege?

Into week five now and this is where things get interesting - not for the doctors or surgeons, they have done their bit, and very successfully.  Now we are onto the phase of getting a regimen for Daisy that will keep her reasonably stable and minimise time at hospital.  The Mitrofanoff surgery was originally intended to provide an easy route for regular catheterisation, however inserting a catheter into the stoma is proving difficult both as Daisy finds it traumatic and because of all of her previous abdominal surgery it isn't the most straightforward channel to catheterise.  It has now been decided that she will have a catheter left in the stoma for a week at a time which we can drain during the day and keep on free drainage overnight, I am going to be taught to change this catheter and manage any problems that may occur with the long term plan being that we will build up changes so that eventually, several months down the line, we can catheterise Daisy intermittently and leave her tube free in between.  The theory behind all this is great apart from the fact that again she is open to infection from a permanently placed catheter and also bladder pain is a big issue requiring ever increasing doses of anti-spasmodics.  But what everyone agrees is that we will get there, at Daisy's pace and in Daisy's time.

And this is the issue - again Andy and I are taking on responsibility for managing yet another element of Daisy's care that is not common place in the community and we will need to be confident that anyone who is involve in her care understands.  Our concern also is the courses of antibiotics she has received over the past few years as she rebounds in and out of hospital with infections and sepsis, antibiotics which she is developing increasing resistance to.  Our hope is to stabilise this pattern and reduce the admissions but this needs a period of time when drugs can be tweaked and changes made to protocols so that when she does come home it is for a good period of time.  But does all this need to be done in an acute hospital setting?

Our other big concern as Daisy approaches 7 is for her mental health - this is a child who has spent more than half her life in hospital, who has been subjected to countless painful and traumatic procedures, she is making it very clear what she wants and what she doesn't want, and our role as her parents is to make sure that everyone takes her opinions into account too.

What Daisy wants more than anything in the world is to be with her family, all day long she talks (we always think of Daisy talking as she communicates fluently through signing) about her brothers and sister.  If an advert comes on the TV that she thinks Jules would like for Christmas she will tell me, if her Ipad doesn't work she calls for Theo, if we are choosing her clothes to wear she tells me what Xanthe likes.  Daisy loves being part of the family and wants for us all to be together again,..and that is what Andy and I want more than anything else .  A referral has now been made for care at The Children's Trust at Tadworth but I keep being told unofficially over and over that there is no way our PCT will fund a transitional stay at this facility, even though it will provide holistic care for Daisy and support for the family en route home. The possibility of transition via our hospice for an extended period is also not an option, they are so stretched that committing to taking a funded child for a long term child is not possible although there is a glimmer of hope that we may be able to have a short stay for a few days.  The only other options are to just bring her home or to transition via our local hospital, which would give the team there a chance to get used to her latest drug/catheter/TPN/Stoma regimens - these latter two options do not really allow us much opportunity to just be parents to Daisy.  Our biggest hope, and our request to our local services, when we first knew that Daisy would have this big surgery was that we would be offered the chance to have some time to catch our breath before coming home, away from an acute hospital setting with medical support so that we could remind Daisy and the other children that first and foremost we are their parents and spend time together as a family without having to worry about fully managing all of Daisy's care.  Sadly my fear is that we will be so ground down by the relentless strain of never seeing eachother, trying to juggle childcare, trying to be in several places at once that we will throw in the towel and just take Daisy home and try and manage as best we can.

Over the years, as Daisy has become more and more medically complicated and the care involved more specialised is seems like the support we need to get a break from caring is being whittled away.  Without support (as I always emphasise - at not cost to the taxpayer!) from our wonderful hospice Shooting Star Chase Andy and I would get no break from the constant care that Daisy needs.  We do have a funded package of support provided by Social Services but it does not allow us a break from looking after Daisy (it used to but sadly as Daisy has become more complicated the support package has decreased), it merely props us up in order to care for her.  We have PCT funded night nurses now - initially we were allocated 3 nights a week but following their professional feedback on the level of Daisy's care needs this was increased to 4 nights (bearing in mind we have only been able to use them for a few weeks this summer in between hospital stays!.  On a night we have a nurse booked she will arrive at 10pm and I will hand over how Daisy is doing, this can take a while so I don't get to go to bed until 10.30pm, so much for having an early night.  The nurse is able to administer the pain medication Daisy needs into her tube but if intravenous pain medication is required she has to wake me up, similarly if Daisy is unwell and needs to be transferred to hospital she has to wake me up and then can finish her shift early.  I have to get up at 7.30am in order to have a handover on how the night went and prepare to disconnect Daisy from her TPN and get her ready for the day.  When the nurse is in the house, we are not allowed to leave.  Apparantly this is our respite - sorry, but I thought the opportunity to have a night's sleep every other night was a basic human right?  We receive some direct payments to buy in care, but the carers cannot be left unsupervised while Daisy's TPN is running and we cannot be too far away when it is not, occassionally we save up our direct payments money and blitz it on a four hour babysit from one of the hospice nurses - I won't say how much it costs but if you consider that Daisy is classed as high dependency you can imagine the hourly rate.

So I'm thinking about my own fantasy bucket list that the people behind desks who make decisions on who should receive funding should read:-

Things I would like to do:-

Have a weekend away with my husband, without children

I'd like to take all three of the older children to the cinema/theatre with Andy rather than toss a coin on who stays at home

I'd like to go on holiday and not return more knackered than when we left - holidays are wonderful but they also mean that we get no night care at all so not only are we managing the days we are struggling with the nights

I'd love a weekend away with my girlfriends knowing I'm not leaving Andy managing four children and all of Daisy's medical care for the weekend

I'd love to go back to work part time - how can I when Daisy spends so much of her time in hospital and always will?

Reading this through I sound so negative - truly I am not.  I am so grateful to have Daisy in our lives, she makes our family complete. I also know parents who have lost their children who would do anything to swap places with me.  She is the funniest, feistiest, little girl I know and I will do anything for her, I am so grateful that she is still here and fighting her corner constantly- and that's the hook, at the end of the day, no matter how much crap is thrown at us, we will always do whatever it takes to keep our family together and to give all our children some sort of childhood, regardless of our problems.  So we will keep struggling on, battling bureaucracy, educating ourselves on our rights by trawling through endless government white papers and charity publications on the rights of carers while knowing that they count for nothing in the real world.  We can say things like; "well if we just give up then they will have to pay for Daisy's care and that will cost them a huge amount more" - but everyone knows we won't give up, we'll keep fighting, and it's a fight for all of us carers of the most medically complex, forgotten children - for an occasional night off, to be parents not carers once in a while, to be a couple, to be a family...