Archive of ‘parenting’ category
‘But they look so well.’
I hear this often. Along with, ‘you wouldn’t know there was anything wrong with them,’ and ‘they seem fine.’
And I smile and nod and say, yes, we really are very lucky. And most of the time I mean it. My sons are lucky to have such a normal life, but a little part of me wants to scream and shout and stamp my feet at the lack of understanding. Yes, my children go to school most days. Yes, they are well most of the time. Yes, they do look perfectly healthy. But they are not. And a hell of a lot of hard work goes in to keeping them ‘well.’
You know when you have a cold? And you have mucus in your chest and throat and blocking up your nose and ears? You know how crap and exhausted that makes you feel? Well, my children live like that everyday. Except they do not have a cold, they have a condition called Primary Ciliary Dyskinesia. It is a rare, life changing and potentially life threatening condition that has already resulted in my middle child losing two thirds of his right lung. But if you read my blog then you’ll know this, I’ve written about it all before, more than once..
But what you don’t know is that it’s taken me a long time to come to terms with their diagnosis. And that at times that process has affected my relationships. I’m not entirely sure if this is down to me, or the people I know. You see, I know no one in the same situation as me and it is so hard to get people who are not going through it to understand. Most of the time it’s fine and when I’m ok it’s all ok. But then, someone may say something insignificant and it’ll affect me. Our fears as parents are all relative, I know that, but maybe, just maybe, I deserve a bit of extra empathy, maybe, or understanding, some kindness. But then I know it’s hard to put yourself in my position. No one wants to imagine their children unwell.
Over the first few months after their diagnosis I know I was at times perceived to be a moody, grumpy person and it became somewhat true. For, if you’re perceived as something, it’s damn hard to fight against it, right? And I’m sure if my friends read this they’d say I was being most unfair – they’d shout that they did, and still do their best to support me. But, in all honesty, I’m not sure many of them really did. And it’s not only their fault, I know this. It’s also because I don’t tell them how difficult it’s been. Or how isolated I felt. Or how anxious I still am. I feel like I’m constantly having to remind people how hard it all is and then I imagine them rolling their eyes and saying I’m blowing it out of all proportion, because, and I quote, ‘they look so well.’
But not every disability is visible. Not every child running into the playground is well.
I’ve learnt to be more honest. And I’ve learnt to ask for support when I need it. But most importantly of all I’ve learnt from the boys to live every moment with utter joy and to just get on with it!
Edit: since writing this post for The Huffington Post I’m actually a lot better!! Some days it’s hard to come to terms with and looking after the boys and keeping them well is all consuming, but a life changing diagnosis is like a bereavement of sorts. It’s always there, but you get used to living with it and you learn to laugh again.
Four weeks ago we got a puppy, and one of the biggest pieces of advice I have received ever since is how important it is for me to socialise my dog. Everyone who knows anything about dogs has said that it is vital to introduce him to as many different people as possible. Men with beards, women with glasses, hats and thick coats…boys in dresses.
Yep, you heard.
And yet if the interview I just watched on the TV is anything to go by, some people don’t think even socialising their children is important. In fact, they think that introducing their child to a boy who wears a dress to school is dangerous.
Are you kidding me?
This couple believe that sending a boy to school in a dress damages the other children in the school through a mix of confusion and horror. They think that a boy in a dress is so damning to their children’s upbringing that they have decided to home school their children and are taking the school to a tribunal to force the transgender boy to wear trousers. They think he is unwell and needs medical attention. That what he is doing isn’t fair because he is challenging views on gender and forcing other children to come into contact with something unnatural.
And I think they can fuck right off.
We live in a world full to bursting with diversity and to deny any child experience of that is dangerous in my opinion. How about teaching children to accept everyone? And that there are no rules about clothing and gender? That the world could be full of empathetic and supportive human beings if only we taught children right from the beginning to empathise with others. Not teach them instead to be close-minded and run away from anything they don’t fully understand.
To criticise the child or the parent for allowing him to wear a dress to school smacks of fear. You are not giving that child any credit. You are not allowing them to be themselves. To trust their instincts. To accept who they are. To accept others. Why not use it as an opportunity to teach your children to accept everyone?
We are talking about children. Children who are all special and unique. Why not embrace that? What are you teaching your children by removing them from this school? From isolating them away and making their decisions for them and controlling their experiences? You are doing them no favours. You are merely excelling in inciting close-minded thinking.
Stop saying how it’s going to affect all of the other children in the school. It’s not going to affect them in a negative way if a boy comes to school in a dress. What are you scared of? That your son may come home and put a dress on? Would that really be so bad?
When I was a primary school teacher I often saw bullying and its effect. Bullying that stemmed from lack of understanding of something, or someone different. Singling out a child who is clearly already facing confusion and opposition for his choices is beyond unkind. And as parents if we don’t teach our children to be more open minded, understanding, empathetic and more accepting then we are failing future generations.
I applaud the parents of the boy in the dress and his school. They are truly child focussed and letting the child lead them. They are not enforcing gender constraints or out-dated rules on anyone and that should be celebrated. Childhood is magical. There should be no judgement. No rules. If a girl likes pink and princesses, then that’s ok, just like it would be if super heroes were her favourite toys. If a boy chooses to play with cars then there’s nothing wrong with that either nor is there if he pushes a pram around his house.
And if one incredibly brave child wants to wear a dress to school then bring it on!
The world is changing and evolving and it is time we all went with it instead of judging and criticising.
Right, I’m off to find a beautiful mix of different humans to help socialize my puppy. He doesn’t care what you wear.
Sibling rivalry: competition between siblings especially for the attention, affection, and approval of their parents.
My two youngest are currently on top of one of those rope-climbing contraptions in our local park. The ones that look like a gigantic triangle tangle of wires designed specifically to alarm parents when their children are at the peak waving manically, whilst not holding on. One of mine is halfway up, and the other (the eldest of the two) is at the top, coaching his younger brother on how to climb and reach his dizzying height. This is a good day, a day where they are friends, a team working together and supporting and encouraging each other.
It’s not always this way.
Especially when you add my teenage daughter into the mix.
Don’t get me wrong, my children are very pleased to have siblings, but sometimes I think they’d rather not have them around all of the time. Rivalry between people who share blood is inevitable. Even the most placid of personalities can be riled by those closest to them and as a parent it can be frustrating and upsetting to watch.
I have two ways of dealing with the disagreements, which mainly occur when my children are tired and drained of any kind of resolve. If my they are physically fighting, which thankfully is not a regular occurrence, then I tend to dive in and resolve the situation, no-one needs to get hurt because they both want to play with the same toy, and anger should never be allowed to erupt and be directed at another just because they’re doing something you don’t like or can’t control. However, if it is a verbal disagreement then I often stand back and wait, for it’s these very encounters where children begin to learn to manage conflict. To understand empathy. To fight their corner. To adapt to situations and manage shit beyond their control.
Imagine we were all thrown together in close contact with people we didn’t chose to be with, made to get along with, share bedrooms with, spend more time with than anyone else. A mix of people with different needs, wants, personalities, and beliefs. People who are competing with you for attention and affection. We only have to watch Big Brother to know how those situations work out. Conflict and rivalry seeps in from day one. Siblings are the starting blocks for dealing with a world where everyone is different. For understanding things from another perspective. For learning about compromise.
Whilst also learning quite rightly that the world does not revolve around you.
My children know this, even more so because of the boys’ medical needs, and I am in awe of the way my teenage daughter is accepting of the situation. And also how beautifully supportive the boys are of each other; they hold hands during blood tests whilst telling the other one that it’s ok, it won’t hurt for long. I’m lucky that something so horrible has brought out the best in my children and dampened their rivalry somewhat. My brother and I were not the same as youngsters. Best of friends now, we fought endlessly as children and exhausted our mother because of it. And the stuff we fought over all seems so petty now. What to watch on the TV. Toys. Winning Monopoly. Again it was illness that changed it all. First my brother contracting a bone abscess and being in hospital over Christmas when he was eleven, and then our father passing away when we were in our early twenties. Landing on Mayfair and going bankrupt was insignificant after that. My brother says he didn’t know how much I loved or even liked him until he went away travelling for six months when he was eighteen and I balled like a baby when saying goodbye. Something he doesn’t let me forget.
Sadly not all rivalries can be contained to childhood. It’s sad when families fall out and siblings no longer speak, but you can’t force people to like each other even if they are related. You can, however, force them not be to vile to each other, but often in these cases things have gone too far, resulting in estranged families who no longer speak.
And, of course, not all children have siblings. In my novel, currently on its fifth and hopefully final draft, three only children seek to fill the space their unborn siblings have left. And that doesn’t end well. Not that I’m saying being an only child is a negative thing, not having siblings doesn’t automatically put you at a disadvantage in life, of course. Being an only child, or a sibling of one, or to many all has pros and cons. And I haven’t even touched on the horror of losing a sibling in childhood, that deserves a blog post all of it’s own. So does writing about half brothers and sisters and the many wonders of blended families, like mine.
There are many angles and things I’ve not touched on here, I know this.
In this post I wanted to focus on rivalry between siblings and how the inevitable fall outs can help teach children important life skills. There isn’t enough tolerance around at the moment, or empathy. The world is a very different place to the one I grew up in and children and teenagers face more challenges than ever before. And I do wonder if parenting now has affected this. Helicopter parenting, tiger mums, over protective adults who strive so hard for their children to be happy that they won’t even let them have an argument with their siblings and resolve it independent of adult intervention.
Yes childhood should be filled with love and laughter and play, but it’s when the foundations for life as an adult are laid down ready to be built upon.
And a healthy dose of sibling rivalry can help do just that.
This post was inspired by the new novel, Blood Sisters, by author, journalist and Sunday Times Bestseller, Jane Corry. Blood Sisters is out 29th June, pre order here now.
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…
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.
Love, me x
Yes homework should be banned. I have said it before and I’ll say it again – children need to be allowed to be children. The school day is jam packed enough with academic and educational lessons, and in my opinion that is where it needs to stay.
Homework is a complete and utter waste of time. It helps no one, least of all the children and I can say this with absolute confidence having been a primary school teacher and assessment leader who has monitored the impact of homework on children’s learning and their knowledge retention. Homework is often fought against by the children and then it creates tension, which leads to huge battles that only serve to make exhausted and tired children feel even worse about themselves and their learning.
Children are naturally inquisitive and motivated. They just are. But the pressure piled on by the government and schools with regards to their education stamp this out of them bit by bit, until they no longer want to learn and are no longer enthusiastic about school.
Home should be the place where children are allowed to relax, play, and be taught age appropriate skills that serve a purpose in their lives. Swimming, bike riding, cooking to name a few. They do not need to sit down at the dinner table and spend the precious few hours after school with their parents struggling with yet more work.
Homework takes away quality family time. There is no time to go to the park after school, or go swimming or bowling or do anything, because the school day does not stop at half past three anymore. And on top of that, many parents often feel inadequate because they don’t understand homework set and cannot help their children. How great is that, setting something that makes the entire family feel like a piece of crap.
I wish now, just like I have wished for the last few years, that people would realise that children are not work horses good for nothing but doing academic work until they leave school and then have to go out into the real world. They don’t deserve to have their childhood sucked away from them by people who truly believe that bringing a horse to water will make them drink. Throwing extra work down children’s mouths will not turn them all into geniuses. Ask a fish to climb a tree and it will fail, yet breathe underwater and it will excel. What about those children who are destined to be creative? Those who could be inspirational artists or award winning designers? What about those who will excel in the West End or inspire the next generation somehow? How does homework help them?
Being academic is not for everyone. And making parents force their children to consolidate the learning they have done at school is unfair. That is not a parents’ job. As parents yes, of course, we want to and can encourage and support our children through their time at school, but we do not need to become their second teacher. We are their parents. Their carers. The people responsible for helping them grow into independent and confident adults who are not afraid to chase their dreams.
When will this obsession with academia being the sole focus for all children end? When will education teach them skills they could not survive without at adults? Allow for individuality? Allow for creativity?
When will children be allowed to be just that…children? Without a fear of failure. Without pressure. Without stress.
Children are the most magical and wonderful human beings on this planet and they are the only things that can offer hope and inspire change. And change is what we desperately need because the current state of the world is one that is going to require resilience, empathy and compassion in bucket loads.
Take your child to the park. Show them the world if you can. Open their eyes.
And throw the damn homework in the bin.
Overeaction: To react with unnecessary or inappropriate force, emotional display, or violence.
There was a gif on social media last week that had a man laughing with the words, ‘for every male reaction there is a female overreaction.’ And yes, yes unsurprisingly this angered me. It was a man rolling his eyes at all women and branding us drama queens and emotional wrecks who flip at the smallest of things. And maybe in some way I proved him right by feeling annoyed by it, but the main thing I thought was, has nothing changed? Are women still viewed as these highly strung and hugely emotive, sensitive little souls?
And then I went to Blogfest16 and was proved very wrong. Women are not meek, they are not mild and as Shappi Khorsandi said, they ‘are running the world.’ There were amazingly engaging panels filled with inspirational women talking about issues in a measured and thought provoking way. The panel sessions discussed female presence on line, looked at campaigns strong women have led and are leading and talked about finding your voice when others want to silence you. And yes, by ‘others’ the speakers often meant men, because in their experience it always was white men who were trying to silence them. White men who send threatening tweets and attempt to make these women disappear through fear, by sending vile tweets or leaving hideous comments often attacking the women and their children. Miranda Sawyer described them as drunk men in a pub who should be left well alone, and I agree.
But I also agree that not all men are like this, and that sadly the many who are ruin it for the good ones. But yesterday the good ones joined in. They criticised a phenomenal event for not acknowledging them. They were upset by the ‘man bashing,’ and whilst I concur that bringing men down is never a way to thrust women up, the attacks weren’t personal. They were in context, they were real. Damn right Jess Phillips MP should get cross when asked if her husband is going to ‘babysit’ their children. And hell yes Sara Khan should bash the men who threatened to gang rape her in every orifice.
Mumsnet’s tagline is ‘parenting for parents’ and I know, I KNOW that means everyone – for there are many different people who come under that umbrella – but the event was headlined by big female names and many of the sessions were clearly focussed on women and were obviously going to have a strong feminist vibe. And if you were a man and you attended those sessions then I am not sure what else you expected. And it makes me angry that in an environment that should have been a safe space for women to come together and support each other and scream loud and clear about inequality (many of us technically working for free now until 2017 thanks to the delightful gender pay gap) and for me that was tarnished by the men who felt they weren’t acknowledged or catered for.
The friend I went with is running a blog for her business. She is not a mummy blogger and she knew full well that in some of the sessions she would have to work hard to take what she was listening to and adapt it for her purpose. She expected it to be pro female and strongly feminist, trusted the strong line up, and wasn’t disappointed.
Why couldn’t the male attendees do the same? Of course Mumsnet are going to target the majority of the audience and they do not need the men there, or indeed at home in their own little filter bubble, criticising the event for not meeting their expectations.
Every day women are made to feel vulnerable and repressed and out of place in their lives or not good enough. Women have jobs purely because companies need to tick a box and employ a certain number of females. Mothers are made to feel inadequate for staying at home and raising children. They are over looked for jobs they could be awesome at if there’s a man interviewing next to them. If they judge critically they are seen as moaners, if they are unhappy they will be criticised for saying so.
Sara Khan rightly said that there is ‘nothing more dangerous than a female with an opinion,’ and last night on Twitter she was proved right after I attempted to point out the hypocrisy of a tweet only to then be called a hypocrite myself, with my point being completely twisted and misinterpreted. I was not belittling daddy bloggers. I was not turning everyday sexism around and being sexist. I was not saying men were not welcome at Blogfest. I was trying to point out how this is how women feel ALL the bloody time and get shot down for fighting against it. That isn’t hypocritical. That is the exact opposite. Why the hell we can’t have an event for women about women without having a man complaining about it and trying to turn it into something it isn’t destined to be is enraging. We do not need men taking over everything. I think women would like to keep certain things just for themselves. And damn right they should to.
Blogfest16 for me was diverse, thought provoking and inspiring and I think women are even more wonderful now than I did this time yesterday.
And that is what I am going to hold on to. And I know I am not overreacting when I say that women, we really can rule the world.
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?
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…
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