Archive of ‘personal’ category

Thank You

Tonight I am sitting on a panel for an event hosted by the Female Empowerment Network. We will be discussing whether women can have it all and stay sane, a hot topic for Mental Health Awareness Week. It seemed the perfect excuse to re-publish this letter, which originally appeared in Bristol Woman magazine…

Dear you,

Thank you for not judging me. But for listening, and nodding without telling me I was being silly. You never tried to fix me. You never tried to change me. You knew I was ill and you knew I’d get better. Even when I doubted I even wanted to.

Thank you for not abandoning me. For sticking by me even though I wasn’t very nice to be around, or easy to communicate with. For spending time with me when I couldn’t be alone. And for leaving me in peace when I needed the isolation.

Thank you for accommodating my paranoia without making me feel paranoid. You made the impossible seem possible and made me feel safe. You allowed me time to process decisions and events and protected me when I was unable to think clearly enough to do even the simplest of things.

Thank you for feeding me. And for making sure my children were fed when I was trapped on the sofa unable to move for fear of waking the baby. For the take away meals and cups of tea. For the juice and the dark chocolate.

Thank you for understanding why you couldn’t hold the baby. Or that you had to hold the baby when I couldn’t anymore. For getting why I cancelled plans and hid away. For still phoning even when I wouldn’t answer the phone or return your texts.

Thank you for calming me down when I couldn’t breathe. For never telling me I needed to pull myself together or that I was crazy. For staying strong when I was weak. For being patient.

Thank you for coming with me to the doctors and talking to them honestly about how I was behaving. For not showing your fear. For looking after me. For loving me.

Thank you for still being my friend, my mum, my husband, my family.

Thank you for giving me hope.

Thank you.

Love, me x

Since when did healthy equal skinny?

Diet: a special course of food to which a person restricts themselves, either to lose weight or for medical reasons. “I’m going on a diet”
synonyms: dietary regime, dietary regimen, dietary programme, restricted diet, crash diet

 

I bet I can guess how the majority of your conversations are going this January.

Let me see….

Someone is doing dry January. Someone else has joined weightwatchers. Another friend has given up sugar and a different one is rebelling against it all and scoffing everyone’s left over Christmas chocolate.

Am I right?

And yes, all of these things are well and good, and being healthy should be encouraged, but I am becoming increasingly annoyed by the fact that most people are doing these things because they feel pressured to lose weight. Because they have been conditioned for years and years to believe that if they are not slim then they are not healthy or attractive or good enough. The diet industry and advertising work hard to make us monitor every morsel and scrap of food we put in our mouths and then feel guilty and like failures when we do not achieve ‘slim’ status.

And I for one have HAD ENOUGH.

For starters being slim does not equal being healthy. Many diets encourage you to rob your body of vital nutrients, which then, along with having a 95% failure rate anyway, damage your body even further, and make it highly likely that your metabolism will be permanently screwed and you’ll end up gaining weight in the long term.

And anyway, who decided skinny was the ultimate make of body in the first place?

When I meet with my girlfriends the majority of the conversations we have focus on our bodies, and our self-loathing of them. Someone is always trying to ‘be good.’ Someone else is also always complaining about how fat they feel. No one is ever happy.

But also no one ever seems to address their health, mental or physical, with the same level of importance. When we greet each other we say, ‘Oh you look well,’ or ‘have you lost weight?’ Never ‘Oh you look happy today!’ or ‘have you been inspirational lately?’ We always focus on what we look like on the outside and it is ALL wrong. And it is also an unhealthy way to behave as it perpetuates the belief that unless we are skinny we are not attractive, are lazy and greedy and not good enough.

But we are all good enough. Our bodies are the most magical and amazing things no matter what shape or size we are. OK, yes, being morbidly obese isn’t great and in that case a sensible plan of eating and exercise is without doubt what is needed, but most of the people I know who feel like a fat piece of crap are way below the average size of a woman. And yes, I know it’s also ‘all relative’ and about how that person feels about themselves personally, but again, I reiterate, who the hell decided skinny was the goal we should all strive for? When did curves become a bad thing? Who decided curves needed to be photoshopped out of existence in magazines and posters?

If you are doing dry January or are giving up refined sugar then I applaud you, but please do it for your health, and don’t for one minute think you’ll be happier if and when you are skinny. It doesn’t work like that. We’ve been conditioned to believe it does and that skinny = perfection, but I want to challenge that. Body image at the moment is messed up and we are raising a generation of girls who are becoming anxious about their weight as young as seven.

Stop focusing on weight and focus on health. On feeling energised. On enjoying life for it is often too painfully short.

You’re all blooming gorgeous – believe it!!!

 

This post also appeared on The Huffington Post – http://www.huffingtonpost.co.uk/../../jen-faulkner/since-when-did-skinny-equ_b_14101574.html 

 

 

Aurora Borealis and Fireworks

When do we start planning the lives of our children? Is it when we conceive? Or is it earlier than that? Does everyone, unconsciously at least, absorb events, feelings, hopes and dreams, and hold them in a tiny part of their brains ready to transmit to those they may give birth to.

We may think, as a stroppy teenager, angry at the world that we will never speak to our children in the way our parents do to us. Or we will find a love in something so powerful that it absolutely has to be passed down to our children so they can exact the same pleasure we have from it.

However the hopes and wishes for our children manifest themselves in our minds there is always one enduring want – for them to be healthy. You often hear people comment when asked, probably for the millionth time, ‘Do you know what you’re having?’ that they don’t care as long as ‘it’s’ healthy.

And so, what happens, when your child isn’t healthy when they are born? Or are diagnosed with a life changing disease when they are still young and vulnerable? Do your ideals for their lives flash before your eyes, like time is said to do when on your deathbed? Do visions of what could’ve been dance and flicker before you when dealt with such a hand?

I should know. I should know because I have been there. I am that mum. I have sick children. And ever since their diagnosis I have been struggling to find the right way of describing how our lives have changed. How what we thought was before us was snatched and tarnished with the threat of a life changing and life threatening illness.

And until now I have found no way to explain how that feels. What their diagnosis has done to them, to my husband and I and to our family, who are all affected. But then, two nights ago, I watched a documentary on the Aurora Borealis, where the night sky is lit up by the most beautiful, natural lights in an awesome show of colour. And it got me thinking. Whenever I see the lights in photos, or on the television, they fill me with pleasure. One day I’d love to see them for real and experience nature at its most awe inspiring.

The journey there wouldn’t, of course, be stress free. Especially if I went with the children. There would be arguments along the way. We’d be oh so very tired when we got there, but would marvel at the relative ease with which we are now able to travel around the world. We’d laugh at the time our suitcases went missing and have fond memories of the time we caught a plane for our honeymoon and talked about doing this, seeing the Northern Lights, with our family complete. We’d be making the journey with a multitude of other people from all different countries and backgrounds. And there’d be a plan. A guide telling us what we needed to look out for and the best times to travel and see them. It would be an adventure and one that we would all be on together, with other people who, like us, would want to offer their children the very best experiences in life.

And then I took this dream and put it out of context. For not everyone gets to go to see the lights, even though they may want to. Some people are forced to watch fireworks instead. Something that is noisy, artificial, and dangerous. Fireworks have the ability to wow and hurt at the same time. They are not predictable. There isn’t just one destination where they can be seen – they are not always let off at the same time and in the same place.

My family wanted to see the Aurora Borealis, but instead we’ve been singled out to observe the fireworks. At first we watched from afar, not wanting to be herded in with the other people there. We watched the different colours and patterns and oohed and ahhed. But all the while believing this wasn’t go to be all we were going to see forever. We’d be allowed to go to the lights at some point. But then, over time, we were pushed deeper into the crowd. It didn’t matter if we closed our eyes to shut out the bright, artificial lights, or the noise – the fireworks were still there. And they had the ability to catch us off guard. Make us jump, like when a firework is set off at 5pm on the first of April instead of 5th November after it’s dark.

And fireworks burn. Scar. Leave you with physical injuries that, although they aren’t painful and raw forever, remain as a reminder of what happened and where you are. Where you can’t escape.

Some people in the crowd walk away from the fireworks. You can hear them scream, ‘I didn’t sign up for this shit,’ and as it’s all a bit loud and unpredictable, they go. To where I don’t know for I don’t believe you can fully ever leave the fireworks once you’ve been forced to go to the show. There’s always someone nearby ready to set one off and rock your world once more. It can be peaceful for a time, but never for ever.

And so at the moment, this is where my family is. We are repeatedly being surprised by loud noises and sudden fires, and even though we’ve remained relatively unscathed so far, it’s been bloody hard work. We have to tend to the field where the firework show is daily, and it’s tough fighting the fire to make sure we don’t get burnt. But we are doing it. We’re getting used to this new future. This new place we find ourselves in. The Firework Show. And The Northern Lights and all the hope and wonder they would’ve brought remain a distant memory. Nature has played us this cruel hand instead.

And all the while, the most important thing is to make sure the children enjoy the show. That not for one minute do they feel they are missing out on something more spectacular. So we embrace the show, buy them sparklers and candyfloss and take them on every single ride we can.

They know no different and for as long as I am fighting fireworks, I will fight to keep it that way.

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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…

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

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.

Diagnosis

Diagnosis: the identification of the nature of an illness or other problem by examination of the symptoms.

This time next Thursday, I will be sat at home with my fasting six year old, waiting to take him into hospital for a lobectomy. Surgery where he has to have part of his right lung removed because it is permanently collapsed, and what remains is a hot bed for mucus and bacteria.
This diagnosis and operation has been a very long time coming and, whilst I know that it needs to be done urgently before the rest of his lung is affected and he needs a more serious remedy, the preparation for a stay in hospital and surgery like this is not easy.
When my son was born he was a healthy baby weighing in at 8lbs 10oz. I had a normal delivery and we were home the next day. He fed well and after an initial scary weight loss continued to thrive. There were a few strange things that happened, which each of them on their own should not have rung alarm bells, but looking back now maybe were all connected. He failed his newborn hearing test, in itself not unusual, and soon after passed one at the hospital and was given the ok. He had reflux, as many babies do, but vomited blood one day when he was a couple of weeks old. The doctor checked him over and said it was nothing and a one off, which technically it was. Then at four months old he had an anoxic seizure. Again, he was referred to the hospital and checked over and they said it was a one off, which again, it was. (We did buy a breathing alarm for the cot after this, which thankfully never went off.) He had the usual coughs, colds and viruses, but nothing that required hospitalisation or more than one dose of antibiotics.
But he was always full of snot and mucus and had a permanent cough. It was present in the winter, spring and summer and was no worse day or night, but it was there and ever present and when he was two and a half was diagnosed with asthma. I remember telling my mum, right then and there after that diagnosis that he wasn’t asthmatic. That it was something else. But we trusted the doctors and gave him a brown preventative inhaler every day.
And he started to waste away.
Dark circles appeared under his eyes and he began to fade in front of us. He looked skeletal and every photo I have of him at that time I have had to delete because they broke my heart.
Again back to the doctors we went and he was put on protein shakes, as he was malnourished and failing to thrive. This was when the phlegm vomiting started. If he laughed, cried, ran too much or sometimes simply for no reason at all, he would cough until he threw up a yellowy grey pool of mucus. An urgent referral was made to a paediatrician, however the wait was for twelve weeks minimum.
We couldn’t imagine what would’ve happened had we have had to wait those twelve weeks and were so lucky that my husband had private health insurance. I spent over a day on the phone to various different people and ended up getting an appointment for the next week.
At that first appointment my son was checked over, had his chest and heart listened to and the initial thoughts were that maybe he had a cow’s milk protein allergy, reflux and possibly something wrong with his immune system. Bloods were taken, we were given Omeprazole for the reflux and advised to go dairy free, with a follow up appointment made for in a few months.
When we returned a couple of months later, I said that he was better, but not fixed. So we were referred to an ENT specialist who said maybe his tonsils needed to come out, but because he was not 100% convinced this was the problem and I did not want my son to have an unnecessary operation, we decided against it. The ENT doctor gave us some Flixonase for allergic rhinitis and off we went again, now with two different sorts of medication.
A few months later we were back and yes, again I said things were ok, the early morning marathons of coughing and retching were less frequent, but still I didn’t think we’d cracked it. So this time we were sent away with Montelukast to help my son’s lungs as the cough and phlegm vomiting were ever present.
I remember during this long period of time, when I was back and forth to the paediatrician, how frustrated my husband and I were. The paediatrician always said that with children they work very differently to how they do with adults in that they don’t do any investigative tests and work empirically. To us it seemed like they were just throwing medicines at us and I wondered if we’d still be going there in ten years time with our son now on a hundred different types of medication.
But what choice did we have other than to trust them and go with it? He was improving after all, and with each new medication we hoped we’d finally cracked it and solved the puzzle.
We returned again, a year ago, and this time we were given Certirizine, which is an anti-histamine.
The phlegm vomiting and cough all but disappeared and we started to reintroduce some dairy. He began to put on weight and had more energy than he’d had in a long time. The combination of the four different types of medication seemed to be working.
However in December, the paediatrician noticed that he had some clubbing of his fingernails, a sign of lung disease, and ordered an immediate chest x-ray, which showed a collapse of the lower lobe of his right lung.
Our son needed a four-week course of antibiotics in an attempt to re-inflate the lung. It didn’t work.
We were then referred to a respiratory paediatrician who told us some hard facts.
This could be congenital and he was born with a diseased lung. Or it could’ve happened from him having a nasty virus that damaged the lung. He could’ve aspirated something, which had caused the collapse. Or he may have a genetic condition called PCD, which had led to this happening.
There was so much to take in and the advice was that he would need antibiotics for the foreseeable future before having to undergo a bronchoscopy to look into his lung, followed by a two-week stay, on IV antibiotics, in hospital with vigorous physiotherapy to try and re-inflate it.
We spent three long weeks in the Children’s Hospital and he had IV antibiotics, two bronchoscopies and intensive physiotherapy all to no avail and so, at the next outpatients appointment, were sent for an immediate CT scan, which showed permanent damage to the lower lobe of the lung. It was never going to inflate fully again and needed to come out before it infected the rest of his otherwise healthy lung.
The operation is risky because the lung has been collapsed for so long and I’m dreading it, but that is where we are. He has on-going tests to try and determine the cause of the collapse, which we still don’t definitively know, however several results do point towards the genetic PCD condition, which has implications for his younger brother, who too coughs constantly.
He is a wonderful six-year old who has, remarkably, taken all of this in his stride. He hates cannulas (or ‘nasties’ as he calls them) but knows they need to be done, and if you ask him how he is he will tell you, in a very matter of fact way, that he has to have some of his lung chopped out, and that afterwards he will feel better and get all the presents in the world. Children are so resilient and are masters at not worrying about something unless they have to.
I could learn a lot from him.

Opinion

Opinion: In general, an opinion is a judgment, viewpoint, or statement about matters commonly considered to be subjective.

There was, as you are all undoubtedly aware and completely unsurprised about, another Twitter debate that involved/angered a large proportion of tweeps earlier this week.
And I watched and read every tweet with interest. Just as I did after the election.
But not just because of what the debate/argument was about, but more to see how it played out.
You see, I have been involved in many debates of the last few months, mostly during university sessions, and I have become fascinated by the way in which they work. People have always interested me and I always try and look behind the bravado and the words and to work out why they are saying or behaving in the manner with which they are.
Usually it’s about what has happened to them. Their past and all of the many varied experiences they have had which culminate in this thing we call an ‘opinion’.
And, more often than not, when people no longer have a valid argument or line with which they can follow, their response is ‘well it’s my opinion and I’m entitled to it.’
Entitled.
I think it’s that word that sits uncomfortably here. What makes someone ‘entitled’ to something? And does being entitled to an opinion qualify it and protect it from attack?
I’m thinking…no.
Opinions are constructed over time from influences both socially and culturally. For example, natural desires and behaviours corresponding to the female body are born from natural occurrences, whereas feminism stems from cultural constructiveness.
Everyone’s differing points of view are huge bubbling pots of individuality, into which ingredients have been slowly added and combined since each individual was born. In went what their parents thought. Followed by what they heard from their peers. Spoonfuls of ideas gathered from reading magazines, books, and newspapers. A large dollop of what they have watched on the television, or listened to the radio. Snippets soaked up from having travelled to different places peppered with the suffering of a range of illnesses and hardships.
And then…the wonder that is confirmation bias enables people to surround themselves with likeminded people who compound their beliefs. That flavour their opinion soup, so to speak. I mean, having experienced something that means you’re entitled to an opinion on it…right?
But then doesn’t everyone experience everything in a unique way? So won’t each person’s opinion be a different one?
I’m digressing somewhat. Which isn’t a surprise given that I am attempting to discuss something as diverse and complex as this.
Let’s take parenting a newborn as example. You’ll find that everyone has an opinion on that whether they’ve had a baby or not. And, oh, what a variety of opinions on how to handle a newborn there are, some of which are extreme polar opposites. They vary between genders, classes and generations. Instincts are those natural occurrences that feed desires and behaviours whether we are aware of them or not. And then there is the culturally constructed side of parenting. The attachment parents, the cry it outs, to name two. I’m intrigued as to what makes one mum differ so much from another and believe, sometimes vehemently so, that their opinion on how babies should be handled it without doubt the only valid one. It’s like the old nature verses nurture debate. Or…
Nature v Culture. Or…
Naturally occurring v produced. Or…
Natural instinct v human nurture. Or…
Emotion v reason.
I could go on.
The debate this week wasn’t one sided, it wasn’t even two sided, and was almost too complex for me to follow at times. But what I did follow was anger towards someone, who was technically expressing an opinion, a thought, voiced through many differing opinions. There didn’t seem to be any middle ground or initial questioning of the tweet that caused the outrage. There were sweeping statements and judgments and at times became painfully personal.
For me, what there wasn’t enough of was evidence. Some people believe that in order to have an opinion that you are ‘entitled’ to, you don’t only need to have experienced something, but studied it. Learnt the facts. Be able to back up your argument with truths and statistics from reputable sources.
One could argue that your own emotions are a reputable source and that you have an opinion because you wholeheartedly believe it.
Trouble is, those opinions are the easiest to attack and criticise. Not so much opinions, but beliefs maybe.
They are personal. They are individual. And they are real to the person who holds them.
In my opinion, we all need to be a bit more tolerant of those who do not share our views. Especially where those individuals in question are attempting to support and help others.
You are entitled to your own opinions, but what you are not entitled to do, is attack someone else because they don’t share the same ones.

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