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...

Postcode Lottery

Two weeks post surgery and this amazing girl continues to defy the odds and exceed expectations.  No-one who knows Daisy well would have believed how strong and well she would look two weeks in.  She is still on intravenous morphine, paracetamol and antispasmodics, but her ketamine is now going into her jejenal tube along with all her other meds, including the latest additions to her pain cockatil - oxybutinin and diazepam...

She is also nearly back up to her old enteral feeding regimen, although her TPN is still running over 24 hours .  She is clearly over the acute, post surgical phase and now reality bites as we work, at Daisy's pace , to get her back to a regimen of nutrition and pain management where she is comfortable and we can manage at home. Our aim is to get her home and keep her there for as long as possible, that was why we agreed to the surgery, in the hope that it would reduce the infections, but while the medics are all very pleased at how well things have gone, Andy and I are more guarded, relieved that she got through the surgery in one piece but biding our time before we say that the surgery achieve the desired outcome.....I won't be able to say that for certain until a good few months down the line when Daisy has been home and we have a semblance of normality in our family life.

And soto thoughts of going home....we had always prepared ourselves for another long stay, preferring to put the hours in now in the hope that this will pay dividends.    The next milestone in Daisy's recovery will be to remove the drains from her bladder and start to train it in preparation for catheterisation via her new Mitrofanoff stoma.  We don't anticipate this will be a quick process, Daisy has been experiencing a lot of pain from her bladder and we can't imagine that she is going to be too tolerant of a plastic catheter being shoved into a newly formed bladder stoma that she currently associates with pain.  However we know that slowly slowly things will get better and we will perfect our catheterisation skills in the same way that we perfected our Hickman Line & TPN skills and Ileostomy skills and all the other medical procedures we have had to learn on the way, and the mitrofanoff and bladder emptying will become another part of our lives.

Standing back from all of this we can start to see how easy it is to become swept up in the world of caring for Daisy's medical needs, we have become competent in so many areas, I wonder is this a good thing?  What if something was to happen to us, would someone else know what to do???  One thing I have put in place is a "Daisy Bible" a huge file all about Daisy with her care plans, key contacts, letters, information on her communication needs, even pictures of her enjoying life at home - everything anyone would need to understand how to look after her, the nurses have told me that it is invaluable in helping them get to know her and to deal with her needs without always having to ask me.  Increasingly Andy and I have been aware that we need to make sure more and more people know and understand Daisy's care needs so that we get the support we need to parent her and also so that people who look after Daisy realise that she has a say in how she wants things done and what she wants in life.  Daisy is nearly 7 years old, we need to make sure that everyone understands that her opinion matters.

We have been very fortunate during this hospital stay in that there was a huge amount of planning that went on beforehand and teams involved in Daisy's care are co-ordinating and communicating better than they ever have been.  We actually had a multi-disciplinary meeting yesterday to discuss Daisy and next steps now she has recovered from the acute surgical phase.  I am so relieved that the team have clearly got a good understanding of Daisy's holisitic care needs, and specifically that to make her best recovery she needs to be allowed to be a little girl.  They have suggested that instead of condemning both Daisy and as a result the whole family to another extended stay where we tweak TPN volumes and drug regimens Daisy goes to a setting which can manage both her medical and social needs better, this sort of setting would be somewhere like our hospice or a rehabilitation centre like the Children's Trust at Tadworth.  Both options would be fantastic, they would allow Daisy to have fun while having one to one nursing care and an input from her GOS teams, the downside is that this would involve funding at Primary Care Trust (PCT) level

From our point of view how wonderful would it be for Daisy to be able to be out of hospital and transition to home safely with appropriate medical care so that when she did come home she was stable and we were able to confidently support her medical needs - we know that Daisy would want this, however great this plan sounds it comes at a cost, someone (ie the PCT) would have to pay.  If they refuse to allocate the funding for this then Daisy will have to remain in hospital as we just do not have the 24 hour nursing care at home which would enable us to manage her medical needs until she is stable and the price will be Daisy missing out on precious childhood days, her parents not seeing eachother while one stays at the hospital and the other struggles to manage a career to support us and three siblings needs constantly juggled according the to day of the week and which parent can manage to be at home.  There is just no consistency in care strategies and budgets in this country and while our community nurse will take Daisy's case to a panel of managers next week to consider together with letters of evidence from her Medical Team at GOSH it will come down to whether they wish to allocate funding to support Daisy's needs, some PCTs will, some wont - it's a postcode lottery and comes down to cash.  So Daisy will either strike lucky and receive funding to get out of hospital and into a more holistic environment or the decision will be made that the PCT cannot afford it and, as there is no where else suitable for her to go until she is stable she will remain a guest of Great Ormond Street.

Please keep your fingers crossed that the decision goes our way and Daisy gets to do what she wants for a change.

It's a marathon, not a sprint

Today is day three post surgery and Daisy is still in a lot of pain.  Her morphine and ketamine have been pushed up as last night her epidural came out and this was taking the edge of her pain.

Her bowel has still completely shut down but her mitrofanoff is working well.  There is nothing going on that we did not expect or anticipate, from her need to be transfused soon to her low grade fever (as a result of bacteria being release from the colon when it was removed).  So while the first big and dramatic milestone, the surgery,  is over with no major dramas or suprises, the challenge will now be over the next days and weeks as hopefully Daisy's gastrointestinal system starts to work and we are able to assess the level of chronic pain she has that will need managing from an ongoing basis.

The challenge for me is to turn the gears down and move out of sprint rhythm and onto a marathon pace.  It's easy to want to move forward quickly and set yourself up for disappointment, especially after the adrenaline fuelled last few days but the reality, as any parent of a child with complex gastro needs will tell you, it's two steps forward and one step back.  While appearing pessimistic to some doctors who don't know Daisy and quite what she is capable of, I prefer to describe myself as realistic.  I anticpate that things will go wrong, multiple spanners will be thrown into the works on our journey to get Daisy back home, and if things happen sooner than I anticipated then that's a bonus!

We are on a different ward to our usual Rainforest and under the Surgery and Urology teams, I'm letting them get to know me so that I don't come across as a pushy mother.  It's so difficult when your child is so incredibly complex and your main role is to know all about her to reign it in a bit while the professionals do their job!  However I (and of course Andy who is a complete hands on dad too!) am first and foremost Daisy's advocate, making sure that she gets what she needs.  Daisy's palliative consultant has just been to visit her and it needed her to point out to me that most children don't have a tummy that looks like Daisy so my role has to be to ensure that everyone involved in her care knows what to do - after all she currently has five different bags attached, all with separate labels!  Plus a huge scar from her chest to her pubic bone, plus a hickman line and a gastrostomy button and jejenostomy button - I'm so used to all of this I forget that to the unitiated this is all be bit daunting, particularly when you factor in her complex pain management regimen and the fact that she mainly signs to communicate.

Today Andy and I celebrate our 19th wedding anniversary, we really, really did not know what life would have in store for us all those years ago, surviving redundancy, career change, bereavement and the diagnosis of a child with Asperger syndrome would be enough before throwing in the white knuckle ride we embarked on when I was taken into hospital in premature labour in November 2004, but we both believe that we are the living example of what doesn't kill you makes you stronger.  Our marriage is stronger today than ever, helped by a healthy sense of humour and stamina to keep going on this ultra marathon that life is throwing at us.

...and onto the next phase

well, Daisy now officially has only 5cm of large bowel left, a Mitrofanoff channel formed from her appendix for catheterisation and as a bonus a repaired parastomal hernia and a new chapter in her life has begun.

When we met with the surgeons the day before the operation the enormity of what we were consenting for on her behalf hit us, this was huge surgery, with all sorts of risks and possibilities for complications but having spent six hours in theatre yesterday the consensus
among all the team involved is that it could not have gone better. There were so many concerns about abdominal adhesions, viability of her appendix to be used for the Mitrofanoff, bleeding - however everything went according to plan and Daisy is now back on the ward and the long road to recovery can begin.

Again the terrible night she experienced the night before the operation confirmed to us why the surgery needed to go ahead. We have not been able to put any feed into her jejenostomy for many weeks now as she has been refluxing so badly and the night before her operation she vomited constantly and was pouring bile out of her gastrostomy. We hope that this deterioration is not permanent but only time will tell.

In the meantime we are now focused on Daisy's recovery. Not surprisingly her bowel did not like being handled and has shut down, it coUld take a while before it starts to work again. She has an epidural for pain relief plus a constant infusion of double strength ketamine and morphine, we just need to keep her comfortable and let her recover from the anaesthetic , as always our mantra will be " one day at a time"

A Summer, of sorts

Compared to the past three years, this has been the best summer yet for our family, however as always it was marked by hospital stays and emergency dashes to A&E.  In between those times we did manage to fit in some family fun and even had a whole two weeks when we were not in hospital with Daisy, managing instead to have a wonderful family holiday in Devon, thanks to the wonderful charity Torbay Holiday Helper's Network.

But the reality is that no parent should be excited about the fact that they have achieved a two week gap between their child's hospital stays, it is no way to live wondering if the next temperature spike is the one that does not respond to IV paracetamol or is the start of a septic episode.  At times it feels like our phone is on speed dial to the London Ambulance Service.  Each time Daisy has a hospital admission or a bad night it just confirmed to us that we are right in making the decision in going ahead with the colectomy surgery, this is no way to live, her pain management regimen has been going up and up, and it is not an option to continue like this  The other thing that has become evident is the deterioration in Daisy's bladder function making the Mitrofanoff surgery a complete no brainer.


So, after a wonderful summer where we really did manage to fit in quality family time between hospital stays, Daisy will return to Great Ormond Street Hospital tomorrow and will go to theatre on Friday morning for surgery to remove most of her large bowel and to from a Mitrofanoff from her bladder through which we will be able to catheterise her.  She will spend some time in intensive care where she will have an epidural for the pain and after that no-one knows, it truly will be one day at a time.  We know that by taking away most of the large bowel we are removing a toxic source which is contributing to her infections and pain (her colon is inflammed and leaks bugs into the bloodstream which are increasinly becoming resistant to the antibiotics we use to treat Daisy).  We also know that removing a permanent catheter and forming a new channel will hopefully reduce her risk of infection and make her more comfortable.  Our biggest wish for this surgery is that it allows her more time at home with us and at her beloved school with her friends.  We hope it will help reduce some of her pain but it will at least help her symptom care team better target her pain relief.  We hope it will improve her quality of life and give us all more time together.  But no-one knows, as always with Daisy we are in completely uncharted territory, and as everyone who knows her says, she writes her own book.  We know that her recovery will not be straightforward and we know that this will be another lengthy hospital stay - knowing these things in advance have helped us prepare in some practical ways, but in terms of emotional preparation, there is nothing we can do.  Andy likened our lives at the moment as like being in a car knowing it is going to crash but not knowing how bad the crash will be - we a bracing ourselves, and hoping......

So this is it, as every milestone and procedure gets bigger and bigger this is the biggest surgery in Daisy's life, we are in her hands, she has the constitution of an Ox and a lust for life and all we can do is support her in this.  Whatever works for you, prayer, positive thoughts, crossing fingers, please do this for Daisy on Friday morning GMT as we hand her over to the best team of surgeons, & anaesthetists you could wish for....

Happy Days

Happy days in Highgate

Visiting Peppa Pig World

Chilling with big sis Xanthe

Surgery Plans

Oh my goodness, a whole month has flown by and I have not updated this blog - big apologies!!!  I think I'm going to cut and paste some of my statuses from Daisy's Angels (www.facebook.com/daisysangels) from now on so that those who don't use facebook can still see what is happening in our lives...

It's been a funny few weeks, lots of real progress in terms of plans for Daisy, more emergency trips by ambulance and time at our local hospital and we are even managing time at home - for the first time in years I'm actually getting to spend part of the summer holidays with all the children under the same roof.

The biggest news is that we had our much anticipated meeting with Daisy's surgeon at Great Ormond Street.  This was the meeting to discuss whether or not a colectomy was an option for her and whether he was even prepared to carry out the surgery.  Andy and I had talked and talked about this prior to the meeting, veering from being 100% sure we wanted to go ahead to deciding that it was not an option as there were no guarantees.  In the end meeting with the surgeon reassured us of the safety of performing the surgery, he will not perform a full proctocolectomy as this is just too big for anyone let alone Daisy, instead he will take out most of her large bowel which will hopefully massively reduce the colitis symptoms she experiences every day.  It will also mean that she can come off the drugs which supress her immunity and render her at risk of infection and we can treat the colitis more conservatively.  This will not be the only surgery Daisy will have at the time, Daisy's Urology surgeon will also perform surgery on her bladder at the same time to help manage the symptoms of it's deteriorating function.  Initially the plan was to form a vesicostomy, a stoma, from the bladder into her abdomen to allow urine to drain out into a nappy.  After much consultation and discussion however everyone agreed that this was not an option for Daisy, a little girl desparate to get out of nappies.  Instead along with the colectomy surgery Daisy will have a Mitrofanoff procedure where the appendix which will be removed as part of the colectomy will be used to form a channel from her bladder to her abdomen allowing us to catheterise her intermittently.  Individually these surgeries are big, performed together on a girl who is not in optimum health they are huge.  She will need to spend some time post operatively in intensive care and it is likely that we will be looking at another prolonged stay in Great Ormond Street, however our hope, which comes with no guarantees, is that once she has recovered from the surgery, we can reduce some of the drugs she is on which have such awful side effects, her pain may be more manageable and she will be less susceptible to the infections which often lead to emergency trips to the hospital.  Making the decision to go ahead with the surgery was the hardest decision we have had to make for Daisy - we don't know if it will make things better or worse but the main thing that swung it for us is that she or we can't keep going on as she is.

The pain she experiences, mainly at night, is getting worse - she now has regular doses of morphine plus ketamine and then when this doesn't work sedating medicine to help her sleep.  We are seeing a big deterioration in her health, her hair is falling out, she is getting tireder.  But her lust for life is immense - she managed very few days in school this year but every single day was packed to the brim, she won a medal in sports day, had fun times with her friends, learned new skills.  She is vocalising more and more, singing away to herself in bed and her hands never stop signing.  She has so much she needs to do and this is why we made the decision to go ahead with the surgery - desparate times call for desparate measures so although it doesn't have any guarantees to take the pain away we just hope that it will keep her hospital trips down and improve her quality of life so that she can enjoy the things she loves in life.

In the past month we have called 999 three times, each time Daisy has spiked high temperatures and developed sepsis, mainly from the bugs (ecoli & candida) which are permanent residents in her bladder.  I used to drive her to hospital myself when she became ill but she is going downhill so quickly now we have been told not to risk it, so now the whole neighbourhood knows when Daisy has gone back into hospital.  But as quickly as she goes downhill, Daisy can bounce back once she has had enough doses of IV antibiotics.  So the moment she can come home we have been out and about having fun as a family.  We visited Peppa Pig World earlier this week - Daisy was beside herself with excitement, as everyone who knows her knows, she adores Peppa Pig, almost as much as she loves Mickey and Minnie.

We are keeping everything crossed that we can also manage a trip to Devon towards the end of next week, Daisy will be able to meet her new cousin and we will be able to have a lunch to celebrate my mother's 70th birthday (Daisy will be in Great Ormond Street when it is Grandma's birthday so we are having an early celebration).  We have been given a date of 9th September for Daisy's surgery, this gives us a few more weeks of family time and also hopefully gives us a chance to be out of hospital in time for Christmas.  We are in Daisy's hands as always but have learned flexibility and whatever happens we will adapt to make the best of the situation.