Politics: the activities associated with the governance of a country or area, especially the debate between parties having power.
I clearly remember the first time I voted. My dad drove me to the local town hall, informed me that I would be given a piece of paper and a pencil, and then told me exactly where I should mark my cross.
And I dutifully did as I was told. Because I knew nothing at all about politics. I knew who the Prime Minister was and I’d cheered/got angry based on the results of various general elections over the previous years as a teenager, but my responses were all based on the opinions of my parents. They didn’t shout about it, they didn’t beat me into submission and make me vote the same way they did it just happened, exactly as it happens now. Children are not educated about any aspect of politics, or how our country is run until it is too late and they are eighteen and in the voting booth following in the footsteps of their parents.
But is this right? Is teaching your children about politics a form of extremism? Indoctrination?
Politics around the world has over time become more and more messed up and dangerous – Brexit and Donald Trump are two very real and present examples – but if children were educated about politics then maybe, just maybe, when they were eighteen and given the power to vote for the first time they’d be able to make a more informed, independent decision, knowing the full impact of their actions. If they learnt the basics, without bias, of what each political party stood for, about the past governments and which policies have worked or been an unmitigating disaster, of learning about the country outside of their own immediate experiences, then would they not be in a better position to use their vote wisely? To be fully informed?
Yes, I know that many parents might unwittingly, or I don’t doubt on purpose, pass their own ideals down to their children and OF COURSE this is something that should never be encouraged. But I still don’t think that should mean we can’t educate children about politics at all for fear of this. Children should be free to know all the facts, form their own opinions, and draw their own conclusions. Otherwise isn’t their vote a wasted one anyway?
The current system doesn’t work. It’s not indoctrination, its ignorance. The future Prime Minister may very well be the little girl who was recently on the ITV news giving a passionate speech to Theresa May. Damn right she should know who the Prime Minister is. Hell yes she is right to be concerned about homeless people. She didn’t smack of a child fed some bullshit by her parents to me, she was simply a young girl who doesn’t understand why Theresa May can’t go around giving hot chocolate to homeless people with floppy ears. This child is clearly inquisitive and caring and wants to make a change. And I say that should be encouraged.
What do you think?
This all looks very exciting. I’m thrilled to be taking my boys to the Gromit making session. Sign up now, it’s free!
13th September 2016
Kids of all ages can have gripping Encounters with cinema in Bristol
The programme for the 2016 Encounters Short Film and Animation Festival features special screenings for children and teenagers plus hands-on workshops where you can make your own version of Aardman Animations’ favourite characters.
The festival, which runs from 20th to 25th September at the Watershed in Bristol, features special sessions of family-friendly films. Using a unique approach, organisers asked children to review a selection of films and pick their favourites to be shown at Encounters, so all the movies have been already approved by younger audiences.
On Saturday 24th from 9.30am an hour of films for those aged seven and over will be shown. These include First Snow, the story of a curious hedgehog trying to find his way home in winter, and Wolf, the tale of ballet-loving carnivore looking for somewhere to practice in the woods.
Later day, from 11am, teenagers aged 14 and over can enjoy a programme of films reviewed and selected by those of the same age. This collection includes Ollie Boy, the story of Paris resident Malick who skateboards all day and dreams of escaping to America.
As well as these carefully-selected short films and animations aimed at different age groups, younger festival-goers can get hands-on to construct their own version of an Aardman Animations’ favourite.
On Saturday September 24th at 3pm an Aardman expert will be on hand to help children, accompanied by an adult, make their own Shaun the Sheep to take home. This workshop is free but tickets must be booked in advance. There will also be a workshop for making another Aardman character – Gromit – at 1pm the same day.
The two workshops are part of the festival’s way of marking 40 years of Aardman’s incredible movie making. On Tuesday 20th September Aardman’s co-founders Peter Lord and David Sproxton will make a rare joint public appearance to look back at their films, which have thrilled cinema audiences for the past four decades.
Tickets for Encounters cost £4.50 for anyone under 24, with adult tickets costing £6, £5.50 concessions. For a full programme for Encounters, which features more than 40 live events and 100 films, see encounters-festival.org.uk
When a baby dies it is often a time when people do not know what to say, or how to help. And so they often say nothing due to a fear of saying the wrong thing.
This incredibly moving post is a story of how one woman, Charlotte, is feeling following the death of her baby during pregnancy. She has set up @heart_spill and hopes it can be a place where others can share stories and support each other, whilst raising awareness. It is a safe place where people can talk about pregnancy loss, and not ignore it. Talking is good. It is healing.
*Please if you are in anyway sensitive to this subject then be aware this may be very painful to read.
I am sorry for your loss.
Every time those 5 little words came through on my phone I wanted to scream, “what does that even mean?” Those 5 words irritated and bruised my soul. As time goes on, however, I realise that a loss is exactly what I have experienced. Don’t get me wrong, I did not lose my baby. No, my baby died.
But I have lost other things, things that someone who has never been in my position would not even imagine I have lost.
I feel like I look at what happened as if I was watching a distant family member or neighbor go through it, with a slight haze across my eyes and a “poor them, how awful’ expression on my face. Every now and again, however, I remember that it was me laid in that room, me that heard the sonographer say those words and me who ever so gently stroked my babies hand two days later, my baby that would not be coming home. It is me who will never quite be the same person again.
Pregnancy is supposed to be a happy period in your life, “you are glowing” people tell you, “do you have any names yet?” people ask. You get a buzz in your stomach with excitement speaking about it. Even before the secret is out, you sneak online to look at baby grows and make a note of which ones you will buy once you have had your 12-week scan.
This is the way it should be. This is not the way it will be for me if I decide to try again. I will never again think of a 12-week scan as a safe zone, my eyes have been opened to a side of pregnancy that is much less fun and exciting, a side that is instead anxiety fueled, and stressful. A side where I will wake up every morning and think, “why do I not feel sick today,” “should I have felt you move by now?” The idea of sitting in that waiting room again and being called into the room where my heart snapped is a thought that makes my bones ache. Pregnancy will never again be the same for me.
On 27th September I was due to meet my baby, but I have already done that and have already said goodbye.
I had hoped that by the time my due date arrived I would have some answers as to why this happened. I had hoped that having that information would enable me to make a decision as to what I wanted to do next. But hope is fleeting.
My baby was sent off to Oxford over 12 weeks ago for a Post Mortem, but I have yet to receive any results. How or why my baby died is still a mystery and all I can do is continue to wait. Wait to find out whether there is anything medically wrong with me or whether I will never know why, and it was something that “just happened” as the doctor explained to me can be the case. The amount of what if’s that run through my head on a daily basis is exhausting. I let them creep in for only a moment and then I shut them away somewhere dark, somewhere that I don’t like to look.
During one weekend a couple of weeks ago now, three people in my life had their babies. Three people who announced their pregnancies not long before myself and who I was looking forward to spending my maternity leave with. We discussed mother and baby exercise classes, what prams we were getting and what foods we could not stomach that day. Usually when you hear that someone close to you has had a baby you are full of happiness for them. I did not feel any happiness. Don’t get me wrong, I would never have wanted anything else for them, I would not wish what happened to me on anyone. But I cannot act like I am full of happiness. I did not cry tears of joy, I just cried. With each announcement I cried. Cried for my loss, cried that I would not be in the same position as them in 5 weeks, as I should have been.
The normal thing to do when someone you know has a baby is to pop out and buy a card and a gift and wait excitedly for them to ask you to pop around for a cuddle. Previous me would have been all over this. Current me cannot think of anything more painful. Current me is worried that I will crumble in front of them, that my “brave” veil will slip and I will be outed as the fraud that I am. A fraud who cries alone in the shower and in the car, a fraud who cannot help being green with jealousy that it worked for them and not for me. A fraud who punishes herself for these feelings on a daily basis, even though my therapist tells me that they are completely normal.
Now as you can imagine, people don’t want to talk about a baby dying, why would they? It is not a pleasant thing to talk about, it’s not The Bake Off… This natural human reaction however creates a distance. A distance that is forged from awkwardness.
The difficulty seems to lie in the fact that people don’t appear to know how to talk to me anymore. People no longer look at me how they used to, their voices seem to have changed, their heads tilt to the side whilst they are talking to me and there is sometimes an ‘am I going to break her?” look on their face. You are not going to break me, believe me, I am pretty tough. If my experience in that hospital didn’t break me, you saying the wrong thing to me definitely won’t.
The thing people need to remember is that people who have “lost” a baby do not want to talk about that solely. Sometimes I will want to and that is part of the healing, but most days I just want to talk to you, talk about normal things, things I would have talked about before this happened to me. Please let me.
“I am sorry for your loss.”
There is nothing wrong with that sentence. There is nothing wrong with saying that to someone like me, it shows that you are thinking of the person, it shows that you care, it is 100% better than saying nothing. Just please make sure that you think about what that person has truly lost before you say it.
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.
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…
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.
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.
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 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.
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.
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.
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…
You can find Blossom Jewels on Twitter @BlossomJewels_, Instagram Blossom_Jewels, and Facebook Blossomjewels.
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?
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: 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.