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

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: 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: 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.

Collapse: verb (used without object) to fall or cave in: crumble suddenly: to sink into extreme weakness: (of lungs) to come into an airless state.

There’s a lot of time to think when you are in hospital for two weeks. Seconds, minutes and hours to get lost in your own imagination…or frustrations…or neuroses. 

You see things differently when you have a child who is unwell, at least I have. I don’t care about my weight, or money, or housework, or the little things. So what if someone is rude to me for no reason – it’s their problem and a reflection of how their day is going not mine. Who cares if I’m a bit late, or forget to reply to a text message the same day – true friends understand. 

These two weeks have taught me many things. 

I already knew that I am very much a person who is both a people pleaser – desperate to be liked – and someone who can be quite intolerant of people. In many respects the latter has intensified during our time in here. Some people really do stress about the most ridiculous of things – which I guess are relevant to them, but still. And yes, that may sound harsh, but I…don’t…care. 

I’ve learnt how amazing nurses, physios, doctors and anaesthetists are. They are seriously awesome. They work so bloody hard and go above and beyond the call of duty on a daily basis. There are so many things that happen in children’s hospitals that have blown me away. Right now, my 5yo is sat with Wilf, a bubbly storyteller who is reading him a monster book that he is allowed to keep thanks to a wonderful charity called Readwell. My son isn’t usually a talker, but has opened up and is chatting like he’s known Wilf for years. The people who work here know children, and know how to make them feel safe and important. And of course they are wonderful at supporting us parents too. 

I’ve also learnt about the never-ending resilience of lovely little people. They simply go with how they are feeling at that moment in time and never, ever wallow in self-pity. They get on with it, day after day. No matter what is taken out of them, or injected into them. They may complain at the time, but when it’s done it’s as though it didn’t happen in the first place and their smiles are soon back in place. (Disclaimer: bribery and corruption may, of course, help to inject them with a bit of bravery!)

And of course, although my son is seriously poorly with a collapsed lung that is proving to be very stubborn and reluctant to inflate, and although he is puzzling the doctors as to why this has happened, even though he has a list as long as my arm of other symptoms, he is in himself doing a very good job of appearing to be a perfectly healthy young boy. There are many reasons why a child may be unwell, and varying degrees of how this affects them, I am talking here about my experience with my son. 

I knew sleep would be rare, but I’ve learnt that I can survive on less slumber than I thought. I’ve had a hunger that has in no way been satisfied, but have learnt to listen to my body and eat whatever I’ve craved – my figure will still be there under the blubber and waiting to return when I stop stuffing my face through comfort eating.

I didn’t know I could spend so long in one room (my son has been in isolation) and have dealt with my anxieties and stresses in ways I hadn’t considered before. (You all need Omvana in your life!)

I’ve learnt that one of the most painful sounds is that of a sick, young baby crying. 

I’ve learnt that noise cancelling earphones and Netflix have been the best way to spend the evenings and distract me from the many noises a hospital emits.

The generosity and love from others has been overwhelming. I don’t like being pitied, and have never been good at asking for help, but I have learnt that everyone wants to help and even if you don’t let them, they often do so anyway. I’ve also learnt that everyone helps in their own individual way – ways as individual as the people offering the help are themselves – and to gratefully accept it all.

I still need to learn to lock myself away from the outside world a little less, but must admit I have found it hard repeating my son’s current condition over and over again to so many different people. I love that they care and I am so humbled by the amount of people whoare thinking about him and need to know how he is, but at times it’s been too hard to talk to them all. What do people expect me to say when they ask how I am? How the hell do they think I am? I’m drained. I’m broken. I’m in a constant sleep deprived, anxiety ridden state. We’ve been here for two weeks. Two intense weeks of general anaesthetics, bronchoscopies, ciliary brushings, blood tests, X-rays, mucus tests, biopsies, physio, antibiotics, nebulisers, tubes up noses and into stomachs and more. There have been no diagnoses, only things we now know it’s not, and the lung is still partially collapsed. Harsh as it sounds it’s been easier to ignore people who ask me how I am than to tell them the truth and for that I am sorry. I’ve cried, I’ve had panic attacks, I’ve shouted, but I’ve done it. And I couldn’t have done it without every single one of those people who care having been behind me all the way.

I’ve learnt how my son is so very much loved. The ‘get well soon’ cards and gifts from his friends have filled his hospital room, meaning he has never been short of things to do. Visits and video messages have put that infectious grin back on his face and given him renewed energy and strength. 

I’ve learnt how mature a thirteen year old can be. My daughter has been such an amazing support and has quietly got on and organised herself whilst we’ve been to and fro from the hospital. My two year old has also surprised with me with how aware he is that something isn’t right. He’s needed a lot more cuddles during the last couple of weeks when I have seen him. Mind you, so have I. I miss being at home as a complete family. 

I knew my mum was wonderful and amazing and supportive and she has done nothing but cement that knowledge. She is the best.

I knew how bloody brilliant my husband was. He’s stepped in during the night shifts when it all got too much for me and I needed to go home. He’s listened to me rant. He’s wiped away my tears. And he’s not complained (much!) and was always there when we needed him. He has been such a support whilst also dealing with his own emotions. Not to mention the fact that he had to cancel his yearly snowboarding holiday. That did not go down well!

I’ve learnt that some illnesses are hard to diagnose and even though you want your children to be fixed, it’s not always straightforward. Trusting doctors can take a lot of effort at times, amazing though they usually are. 

I’ve learnt that I can cope with more than I realised. 

And finally…I knew that my five year-old son was awesome…but he has blown me away these last two weeks.

Fingers crossed we get some answers soon – I’m still learning to be patient.