Relentlessness

Relentlessness: a good word for describing something that’s harsh, unforgiving, and persistent, like the hot sun in the desert, or a cold that keeps you in bed for days with a nose like a strawberry. When you’re relentless about something, you mean business.

Being a mum to poorly children, as I’ve said many time before, is not easy. It comes with a whole heap of extra anxiety and guilt and is an endless cycle of hospital visits, frantic emergency appointments as well as cancelling of plans and much needed escapes.

I’m that mum. The mum who doesn’t want to always dominate coffee mornings or evenings out with the talk of the responsibility and stress I face every day. The mum who quietly gets on with physiotherapy, organises hospital appointments, dishes out medicines like sweets, calms fears, soothes pains, and rarely asks for help. I know many parents all do this, but it is relentless when you have children with genetic illnesses. The fear doesn’t ever go away. Not when you are living with a life changing and life limiting diagnosis.

And in my case it isn’t for one child, but two. Double the responsibility. Double the anxiety. Double the fear.

And as the mum it is hard. I have a firm grasp of their diagnosis and treatment and so when people talk to me about my boys I’m often seen as the expert, the doctor, not the mum who has sick children. I don’t want to talk about them in terms of statistics or medical data. I don’t want to be told I’m being a great physiotherapist/nurse and meeting their needs. I want to be held close and allowed to freak the fuck out because I’m bloody terrified.

For four years I faced doctors on a regular basis, my instincts telling me that my middle child was desperately poorly, only to be told he had a dairy allergy, asthma, reflux. I had medicines thrown at me and at one point her was on a cocktail of seven different meds daily. None of it helped and whilst he was wasting away and vomiting thick yellowy-grey phlegm several times a day whilst coughing his guts up all night his right lung was slowly dying. And by the time I was properly listened to it was too late. And it could not be saved.

And that hangs over me constantly. That fear that somewhere in their tiny, fragile bodies, irreversible damage is being done.

I watch other mums at the school gates, worried about their child’s spelling test or whether or not they’ve been put up a reading level and I wish I was one of them. Because I stand there and worry about whether his temperature will spike during the day. Whether his medicines are working. Whether I’ve made him do enough physiotherapy to clear the mucus from his lungs. Whether anyone on the class has been sent to school ‘calpolled up’ full of a nasty bug that could destroy his remaining lung. Whether he is looking skinnier than his classmates and what I can feed him to bulk him out and give him strength more. Whether he’ll be able to keep up when they play in the playground at lunchtime. Whether my phone will go during the day to tell me he is unwell or has been sick. Whether he is happy and enjoying his childhood enough in spite of all the crap he has to face.

When someone says their child is poorly I feel unreasonable anger that their child probably just has a cold and will be ok with some love and a day or two off school. And then I feel guilty for being such a bitch. Because I don’t have the monopoly on sick children.

Being that mum, the one with the sick children is hard. Trying to be normal and accept it is hard. Trying not to wish that it wasn’t your children is hard.

Trying not to scream everyday that is so shittingly unfair is hard.

Maybe a return to blogging every now and again, to purge my brain of all this crap, may just very well be the answer…

Skinade

At the age of thirty-nine and with a fifteen year old daughter I am very aware of how to take the perfect selfie – how to tilt my head; choose a filter – and my friends often joke about how I Instagram the sh** out of everything. I once even downloaded an app that smoothed away my laughter lines and erased my wrinkles.

I agree with growing old gracefully, of course, but approaching forty I’m not quite ready to let go of my prominent cheekbones and hydrated skin. Photoshopping can only work for so long before you begin to no longer resemble the person in the photo. And so, posh creams and filters aside I wanted something that would have lasting and visible effects.

And that is when I was introduced to Skinade by the amazing Amanda Hawkins at My Face Aesthetic It’s a daily collagen drink, which enables your body to be healthy from the inside out and get beautiful skin from within…

Skinade is a multi-award winning, natural peach and mangosteen flavoured anti-ageing collagen drink containing a patent pending formulation of active ingredients that boosts your body’s natural production of collagen and hyaluronic acid. Skinade improves the way your skin looks and feels in as little as 30 days.
Skinade has been developed by leading UK scientists and is designed to provide a perfect ratio of liquid to active ingredients to create one of the most advanced, effective and bio-available anti-ageing skincare products on the market today. Skinade is an alternative approach to your skincare regime – a drink that works from the inside out.

The ingredients are all natural – vitamins, marine collagen, l-lysine and flax seed oil – and it tastes great. It’s best taken before or with breakfast and an hour before or after caffeine, and it does not take long to see results. These two photos of me were taken ten days apart and I can see the difference.

Days 1 and 10 Skinade

My skin felt more hydrated and I also had more energy after only ten days, thanks to the B vitamins it contains. After thirty days it has become an essential part of my daily routine and the results have been even more pronounced.

Days 1 and 30

The liquid formula in Skinade offers a huge advantage in terms of absorption rates. Skinade functions isotonically ensuring that our collagen peptides and essential micro-nutrients achieve an absorption rate of 90-95% – a level that can never be matched by tablets, or powders suspended in solution.

Your skin is the largest organ in the human body and deserves to be looked after. It’s not cheap, but if you think of it as the equivalent of buying a latte a day then it’s worth every penny and not outrageously expensive. And once you’ve been drinking it every day for a while you can always start having it 3-5 times a week to maintain its powerful effects.

I am usually sceptical of this kind of thing, but it works! It really works! Try it and see, you will not be disappointed.

I was given 30 days of Skinade for the purpose of this review. I shall now be buying some more 😉

Blossom Jewels

Blossom Jewels is a new and unique online jewellery shop. They custom make a variety of stylish jewellery – beautiful pieces, which are the perfect accessory for any outfit. Vibrant colours and new, bold designs by cutting edge designers ensure that within their range of bracelets, rings and earrings there is a style to suit everyone and every taste. Endlessly versatile – wear with fancy outfits or jeans and always look cool.

Andrea McCurdy is one of their new in-house designers and has created the Intuition range. She has lived and worked in many places around the world and gets her inspiration from beautiful objects. Her rings are stackable and available in a range of customisable designs. You can create your own stylish combination of stackable rings from four different designs to fit your own personal style. These designs are also available in different metal and stone combinations…rose gold, white gold or sterling silver. With stones in smoky quartz, aquamarine, black spinel, pink tourmaline and peridot.

The website has a handy tool that allows you to view each ring in every combination. There are many wonderful possibilities and once purchased Andrea’s rings will become a part of you – you will not want to take them off.

Meraki 3

I was lucky enough to be sent the Meraki ring by Blossom Jewels. Available with four different stones choices as the centrepiece I chose smoky quartz, with white sapphire accent stones and in sterling silver. And it is stunning.

Meraki

Meraki 2

The Meraki ring works well worn alone, or with any of the combination of other rings. My personal favourite to wear it with would be the Mudita shaped ring.

Meraki 4

The Meraki ring is comfortable to wear, is finished to a high standard and the quality is excellent. I have also found the service from Blossom Jewels to be efficient – it may not be the speediest of services, they are custom making it after all – but you are guaranteed safe delivery of your unique stackable rings as well as an accurate ring size thanks to their helpful chart and ring-sizing tool online.

So if you are looking to treat yourself, or maybe surprise someone special with a gift that will last a lifetime, then you need to check out blossomjewels.com! I know that the rings from the Intuition range will definitely be on my wish list from now on, so many people comment on how beautiful they are and ask me where I got them from. Knowing me, I won’t stop until I own the entire collection! Especially as they will soon be flattered by necklaces and earrings from Andrea’s upcoming range. These will be first on my list…

Rings 5

You can find Blossom Jewels on Twitter @BlossomJewels_, Instagram Blossom_Jewels, and Facebook Blossomjewels.

Blame

Blame: feel or declare that (someone or something) is responsible for a fault or wrong.

2016 was meant to be a tad more positive than 2015 was for me, but several days in and I already doubt whether that’s even possible. Not because of my situation or circumstance, but because of the general anger that appears to be gripping the majority of people I come into contact with.

I’ve been noticing it building for a while. There have been more incidents of unnecessary road rage. Politeness is becoming a fast declining quality. People everywhere seem to begrudge everything and lack any kind of empathy for anyone other than themselves. I know everyone has stresses in their lives, but that doesn’t justify taking it out on some poor unsuspecting person who undoubtedly has their own crap going on. But how did we get here? How did everyone end up so angry?

Maybe the culture of blame, which has been developing over many years, is an important part of how this has happened. The media and its scaremongering propaganda feed on blame. There’s always someone or something to blame for the atrocities the world is facing. No responsibility. No justification for the blame, but blame nonetheless. Making people feel hard done by, put upon, unlucky. Confirmation bias then bonds people through mutual annoyance. Who even cares what they are annoyed about or why they were annoyed in the first place? It’s not their fault they are annoyed. They are not in charge of their own destiny. Hell no. And then, pretty soon, bad things become expected. Looked for even. And worse case – you end up having no one to blame but yourself.

I listened to the news on the radio last week, to a piece about the sex attacks in Cologne. Women, it would seem, are expected to prepare for such things mentally as if they are a given and destined to happen. It was implied that in a crowded place where everyone is fuelled by alcohol what more could these women have expected? Of course they were going to be assaulted and if they cannot deal with that then it was their fault for not being prepared mentally for such an event. And if they were then affected by being assaulted it’s their fault for not having expected it. Or the fault of the government who, the news are reporting, have let the men into the country as asylum seekers. And whom do they blame? The culture they were brought up in where rape is committed and not talked about. Or the bombers who have destroyed their once safe home.

There are more examples of blame in the news – the gender pay gap makes you depressed, it’s what you get for being a woman and having children. Magazines on shelves and celebrity DVDs blame you, yes you, for being fat and unhealthy. The government is to blame for education being messed up and the NHS being on the brink of collapse – ok, I’ll give you that one, you’re perfectly entitled to be enraged by both of those things. But I bet you still blame the government. Right?

Blame isn’t healthy. When you blame you hold on to emotions and feelings that are never positive. Of course you may think that if you blame another it absolves you of all guilt, but it will eat away at you nonetheless. Blame serves no purpose and – back to my original paragraph – makes people angry. And angry people make other people angry. It’s a vicious cycle.

And yes…yes there are some things in life that will make you angry. And justifiably so. I’m still pissed off my dad died when I was twenty-two, and I am fuming that two of my children will have to live their lives blighted by an incurable genetic illness, but if I let that anger absorb me then it would destroy me and many others along the way. Life is too short. There are some circumstances where you can choose to be angry, or choose to see things in an alternative light. It’s not as hard as it sounds to make a change. It could be something simple, it just requires a change of mindset. What is harder is accepting the things that we can’t change and have no control over. In those cases anger is an understandable emotion, but it doesn’t have to be a way of life.

I’ve learnt that the hard way…and in all fairness…who can blame me?

Double Diagnosis

For me, the minute you conceive the emotions of guilt and anxiety become heightened. The world is suddenly full of dangers you could not possibly have foreseen and life changes. No longer do you simply need to take care of yourself. Guilt is no longer consigned to those mornings you awake with a hangover and the events of the previous night slowly come filtering back in. (we’ve all been there, right?) Now there is a new channel for guilt and anxiety, a new reason for these emotions to thrive and overwhelm you. But feelings these things shows you care and encourages you, as a parent, to do the best job you can for your children.
But when you child gets diagnosed with a life changing and life limiting condition what happens then? Anxiety and guilt take on a whole new meaning. And into the mix comes anger, depression and, so I am told, eventually acceptance.
This year has been a very challenging one for me as a mother. Last December my middle child was diagnosed with a collapsed lung after years of poor health and doctors appointments. I have written about the diagnosis of and the events that resulted in him having to have two thirds of his right lung surgically removed. The doctors at this point were still unsure as to what has caused the permanent damage to his lung, it could’ve been a virus that settled in the thick mucus his body repeatedly produced, in which case the surgery would permanently correct this, or worse case scenario his symptoms would return after he recovered from the operation and investigations would have to step up a notch to prevent any more of his lungs becoming damaged. No more of his lungs can be removed, and a lung transplant would be the only option.
Sadly it was soon apparent that the symptoms were not going away. His wet cough and excessive mucus were ever present and he repeatedly had high temperatures. On consultation it was quickly decided that he would, from now on, be treated as a child suffering from the genetic condition Primary Ciliary Dyskinesia. It’s a condition in the same family as Cystic Fibrosis, however not as serious, and is where the cilia (tiny hairs throughout the body responsible for removing mucus from our airways) do not beat in time, or even at all, and are therefore ineffective. As with my son, one of the worst case scenarios is that this causes mucus to pool in the lungs and be a breeding ground for bacteria resulting in the permanent damage of the lungs.
It is a lifelong chronic condition that requires daily physiotherapy; frequent x-rays and potential IV antibiotic and hospital stays due to recurrent and potentially dangerous infections. As well as suffering from hearing difficulties and potential infertility. You can read more about the condition here: wwwpcdsupport.org.uk.
During this year my youngest children, now three, has also noticeably been displaying similar symptoms and even though there is a one in four chance per pregnancy (both parents need to be carriers of the defective gene for it to be passed on) there is still a high chance that siblings can also be affected. My youngest child had had recent chest infections as a newborn and also had a permanent wet cough. We were sent very quickly to Southampton hospital (an amazing team work there and focus on PCD) and sadly initial test have shown that he too suffers, and so he is also being treated as a child with PCD.
And to be honest, since that day in Southampton my anxiety and guilt have hit the roof and I am struggling to come to terms with their diagnosis. This is life changing and potentially life threatening and the responsibility of keeping their lungs clear of mucus and healthy primarily falls to me. I am the one who has to encourage/make them to do their daily physiotherapy, sometimes several times a day, I am the one who has to monitor their temperatures and gauge whether they need to be rushed into hospital for a chest x-ray and sputum test to pre-empt a life threatening infection (and even a common cold could be that infection for them.) I have to make sure I constantly am on top of their antibiotic prescriptions and the paperwork involved is immense…hospital appointments, DLA forms, and so many more. I lie awake at night and hear them both coughing as their bodies try desperately to get rid of the mucus that builds in them everyday and wonder how long before our next infection or hospital stay, and will this be the one where my middle son needs a transplant because his lungs have been completely destroyed by the disease.
I feel guilty everyday that I didn’t fight harder to have him x-rayed when his cough and mucus first began to take its toll on his already malnourished and fragile body. I feel guilty for passing this illness onto them even though I didn’t even know it existed or I carried the defective gene. I feel guilty that their lives will be dominated by physio and staying healthy and nasty tests and hospital stays. And I’m anxious every minute of everyday about their health. Am become obsessed with taking their temperature and, in all honesty, catastrophising a bit about it all. I feel like I am grieving for the healthy children I thought I had and learning to accept that I am now the mother of children with a chronic illness.
At no point do I ever see myself accepting this. It seems too cruel and unfair.
I know there will be a period of adjustment as we all learn to live with this. And I know we will all get there, but for now it is too raw and too upsetting. It hurts.
And sadly anxiety and guilt are in control.
And so I have to ask, are there any mums out there who have been through something similar who can offer me some advice? I would love to hear from you xx

Image

Image: A representation of the external form of a person or thing in art.

My mother-in-law has an obsession with taking photographs. She doesn’t care if one of the children is crying or not posing with a gleaming smile, she simply wants to capture every moment. To cement time on a shiny piece of paper in order to gaze fondly at it and remember the events of that particular time.
Photography is an amazing tool that can have a far reaching impact, but some photos in life show a very different tale. Shocking images of migrant families fleeing their homelands and searching for a better life are plastered all over social media at the moment. People’s emotions and passion to provide a better life for their families and escape terror and horrors many of us can only imagine, are being spread as far and wide as they can reach. And to a point this raises awareness and allows the viewer an insight into something that is of mighty importance at the moment. But do we really need to capture the last breaths of children? Or the private, intimate moments of grief of their parents? Do these people want their photo shared without their permission all over the virtual highway? I know I wouldn’t want a photo of my dead child washed up on a beach, arms and legs flung at impossible angles and clothes washed from them by the sea. Nor would I want to frame the image of my head just above water, cradling my baby and trying with all my power to stop her from drowning.
But not wanting to share these images doesn’t mean I don’t give a shit.
Of course I do. The image of that poor woman trying desperately to keep her baby afloat keeps me awake at night and if I could I would thrust my hands through the photo and grab them both out of the water. Which I hope to God is what the person did after he’d captured her desperation and suffering. Heck maybe saving them should’ve been his priority, not photographing them clinging to life.
Seeing these photos is upsetting, but so is the assumption that because I’m not sharing them I’m heartless.
Seeing these photos is not going to make someone care more than they already do. They are either the kind of people who are empathetic or not and no amount of horrific images are going to change that.
Seeing these images could bring back someone’s own personal horror at an event they’ve worked hard to pull through.
We do not need to see people’s darkest hours in print. There are other many powerful ways to get the important messages they are trying to convey across.
We instead need to focus our energies on helping, however we can. Be it donating money or clothes or time.
Or simply by saying a prayer for them all.

The Good Girl by Fiona Neill

‘The Good Girl’ is a thought-provoking novel with an extremely important message held within it.
The story centres around two female protagonists, Ailsa, the mother of three children and a head teacher at a local secondary school, and Romy, her seventeen-year-old daughter, and heeds a warning for all parents and their children in this modern day world filled with technology, where naïve decisions can have disastrous consequences.
The two different voices of the main characters are distinct. One being written in the first person and the other in the third aids this, and as you read it soon becomes apparent that the story is being told retrospectively. Readers are shown the disastrous event that the novel is leading towards in the prologue, and are carried through the months leading up to it, all undoubtedly with a feeling of dread in their stomachs. The dual narrative enables the reader to see the different viewpoints in relation to the disastrous event and the thoughts justifying each of the characters actions. It’s a fascinating and clever insight into the parallel lives of a mother and daughter relationship and how things can be viewed differently depending on who is doing the observing.
And either way, in the end, the consequences of Romy’s actions have far reaching effects that no one could have anticipated. And both Ailsa and her husband, due to their own past misdemeanours, feel in many ways responsible. For how one is brought up undoubtedly has an impact on who they are and how they parent their own children. However, times have changed an immense amount in the last few generations and parents now are often unable to relate to the lives of their offspring. Technological advances mean that nothing is ever fully erasable or forgotten. Something uploaded onto the Internet loses the ownership of the person in the photo or video and, once out of the hands of its stars, can spread all over the world.
Fiona Neill is very scathing of social media and the Internet and is very clear throughout the novel that she believes it can have a negative impact on a person’s life far after they have had their five minutes of online fame. It’s a lesson that everyone needs to learn. The novel also explores sexting and becoming addicted to Internet porn, both very real issues for all ages.
The book also looks at the different attitudes to males and females with regards to sex. In how men are somehow deemed manly and are revelled if they are highly sexually active, however girls are often broadcast as sluts and deserve everything they get. The inequality is a theme that runs through the book through Ailsa and her husband Harry, as well as their older children. Luke, Romy’s older brother is allowed to bring girls home by the dozen with his parents showing a very relaxed attitude to his private life. And, because he has chosen not to make a live video of said private life that is exactly how it stays.
The sharp writing carries this book along and I found myself thinking about the issues it raises long after I had finished reading it. The characters contain someone that everyone will be able to identify with – even the quirky sex therapists from next door – and the family dynamics make your empathy for each character shift over time.
This book is contemporary and intriguing and definitely something that every adult of teenage children should read. In a world of over-sharing and an Internet that is awake twenty four hours of every day we all need to be thinking about our digital imprint and the effect it could have on our lives and those close to us if something intended to be private reached the wrong fingers tapping at the wrong keyboard.

Thank you to Mumsnet Book Club and Penguin for sending me this book to review. I’d highly recommend it.

Sorry

Sorry: feeling regret or penitence.

I’m sorry if I forget your birthday, or your child’s birthday. I’m sorry if I don’t seem excited when you tell me about your holiday plans for the summer. Or revel in your good news as much as I should. 
I’m sorry if I forget to reply to a text or an email. Or I never answer my phone and call you back. 

I’m sorry if I forget who I’ve told about what, and I repeat myself or leave out important facts. Or that when you ask me how I am I either snap ‘I’m fine’ whilst grimacing, or spend the next twenty minutes moaning. Or cry. 

I’m sorry if you have to hear what has been happening from the mouth of someone else. 

I’m sorry if I seem unfocused and distant and that I often need to hide away and ignore life sometimes. Or that I forget to ask how you are and miss something significant that’s happening in your life. 

I’m sorry if I make excuses and cancel our plans, especially if it’s at the last minute. And I’m sorry for saying no to offers of coffee or wine. Sometimes I just need to be by myself

I’m sorry if o ring you at a bad time because I need to speak to someone right then and there and it can’t wait. And I’m sorry when the phone call is focussed solely on me. 

I’m sorry I can’t say I’m fine anymore.

I’m sorry that I’m a bit broken. 

Sorry

Sorry: feeling regret or penitence.

I’m sorry if I forget your birthday, or your child’s birthday. 
I’m sorry if I don’t seem excited when you tell me about your holiday plans for the summer. Or revel in your good news as much as I should. 

I’m sorry if I forget to reply to a text or an email. Or I never answer my phone and call you back. 

I’m sorry if I forget who I’ve told about what, and I repeat myself or leave out important facts. Or that when you ask me how I am I either snap ‘I’m fine’ whilst grimacing, or spend the next twenty minutes moaning. Or cry. 

I’m sorry if you have to hear what has been happening from the mouth of someone else. 

I’m sorry if I seem unfocused and distant and that I often need to hide away and ignore life sometimes. Or that I forget to ask how you are and miss something significant that’s happening in your life. 
I’m sorry if I make excuses and cancel our plans, especially if it’s at the last minute. And I’m sorry for saying no to offers of coffee or wine. Sometimes I just need to be by myself
I’m sorry if I ring you at a bad time because I need to speak to someone right then and there and it can’t wait. And I’m sorry when the phone call is focussed solely on me. 
I’m sorry I can’t say I’m fine anymore.
I’m sorry that I’m a bit broken. 

 

Preparation

Preparation: The action or process of preparing or being prepared for use or consideration.

How do you prepare for something you are dreading and that affects the whole family and a wide circle of friends? It is not easy, but it is necessary, for when the event happens, whatever that event may be, preparation is always the key to it going more smoothly. Yes, there may be bumps and bruises and unexpected hideousness along the way, things that are out of your control, but preparing as best you can for all eventualities, in my opinion, can only be a good thing.
Next week my six year old son is going to have a lobectomy and this week I am trying hard to prepare for that, both practically and emotionally, and I thought that if I wrote a blog post about my top tips for preparing for a young one be in hospital, it might help me, as well as maybe someone else.
It’s a scary thought, whatever the operation, and having spent a lot of time with my son in hospital recently, watching him have two general anaesthetics in as many weeks, I am more aware of what is to come this time.
So here are my tips:
Avoid Google – Oh this one is so important. How many times have we all Googled something and wish we hadn’t? Because it always ends up with the worse case scenario EVER!! My advice is to speak to people who’ve been there and done it. I was ever grateful for a close friend who took me aside before my son’s first general anaesthetic and told me that children fight it. That they don’t often fall straight to sleep in a fuzzy, relaxed state. And she was right, he did fight it and it was upsetting, but it wasn’t shocking because I knew it was coming. I have since spoken to friends of friends whose children have had parts of their lungs removed (everyone knows someone right?!) and their stories have been heartening tales of a vile few weeks, but a worthwhile outcome. (The operation is a bit like looking at labour when you’re pregnant for the first time, you forget that you’re going to have a baby/recovery time afterwards and that in itself can be harder than the op.)
Don’t Google, ask the doctors and the surgeon and find people. Ask all the questions you have.
Clothing – For both you and the patient! Hospitals are hot and uncomfortable places and the comfier and looser your clothing the better! They do not need to be designer or expensive, you’ll probably throw them away when you come out or save them for doing the decorating, but they really do need to be comfortable!
Parking – Parking in hospitals is pretty hit and miss. A few now allow you to pay by credit card, and some even let you pay as you are leaving so you don’t have to rush out mid appointment to pop more change in. Either way the trick is to do your research. There is often a cheaper public car park nearby. Keep some change in the car and if possible park in a car park that lets you pay on the way out.
Distraction techniques – Yes, you will need to be strong and find ways of distracting yourself during the operation. Personally I write, be it a blog post, a diary entry that no one will ever read, or my novel. It is hard to focus and I know half of what I write is rubbish, but that’s not the point, in writing I am stopping myself from catastrophising, which is good for no one. Watch Netflix, read a magazine or a book, get an adult colouring in book and treat yourself to some fab felt-tips, crochet, or do your tax return, it doesn’t matter what you choose, but you must make sure whatever you choose is at your disposal. Pack a bag in advance with these things in. Mine is in the study all ready.
Food and nourishment, for you – In that bag of distractions you need something to keep you going. Having a child in theatre is a sure fire way for your body to use up all of its reserves and you are no good to anyone if you are fainting in the waiting room. I pack flapjacks, slow release energy foods and water to keep hydrated.
Necessities – if you are staying in overnight with your child then there are some things you absolutely have to have. Earphones!! They don’t cancel out every noise, but they help and at least make you feel like you are shutting off the outside world for a bit. Face wipes. I know beauticians are now going ‘ah no they are the work of the skin drying devil’ but needs must. They work to clean not just your face as well. Dry shampoo. I did not want to leave my son for a second so showers were rare, dry shampoo saved me on many a day. And when I did have a shower I made sure I used my poshest shower gel and pampered myself! And finally, if like me you have a lovely friend who gives you her Netflix password, and another equally nice friend who allows you to borrow her husband’s noise cancelling headphones, then I suggest you get yourself some of these as well!
Buy a notebook – I have a notebook that I keep with me at all times. And every time a doctor speaks to me or anytime I think of a question in it goes. It is invaluable because your brain will not be in a state to retain certain bits of information, or you may only focus on the worse things you are told, if it is all written down in black and white it can be reassuring and help you make sense of everything is going on.
Friends and family – This goes without saying. You need your best friends on speed dial. People who don’t care if you phone them at 3am and do nothing but sob. People who bring you endless cups of tea and bars of chocolate. And remember they need your support too. I am very fortunate to have the most wonderful family and friends. People who know that, when I say they are suffocating me, to take a step back. And others who, when I isolate myself from them, know how to take a step forward. I’m learning that no matter how people try and help, I need to accept their help, even if it seems misguided at the time. Communicating with everyone s vital. People want to know what is going on. And that includes my other children. The three year old knows his brother is poorly and has to go to the hospital and that he will be looked after by his amazing Nana for a while. And then there’s my fourteen year old. Does she know that the surgeon may have to stop the operation to prevent her brother from bleeding to death? No, but she does know it’s very serious and that for a short while my focus will be elsewhere. And that I love her as much as I always have, even if I am not able to show it right then and there.
There’s not a lot that can make the harsh reality of risky surgery on your child any better, and for all my preparation I know will still be that mum in tears at the hospital next Thursday afternoon. But I also know that I’m ready, we’re all ready, and will have done everything in our power to prepare to support each other through it.

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