As the year ends and the blank pages of the story book for this year opens, I find myself full of mixed emotions, for most it’s a fresh start, for me, it’s still the same CF. That said, I feel that glimmer of hope that this could be the year technological advances take us one step closer to finally being able to say our child used to have CF. Sadly I find it somewhat overshadowed by a deep sadness that has come from seeing far too many little ones pass away this past year, their fight cut short too soon and the feeling of helplessness at the apparent lack of progress to get them the precision medications they need.
I struggle when I think about the heartbreaking pain and the sadness of the parents who have lost their beautiful children and I cannot begin to comprehend the grief they face now. I only know the awful pain I feel in my dreams when CF takes over causing tragedy in my sleep, a reoccurring nightmare I have and even though only a dream it often feels too real, waking me up in tears and an awful sickly feeling.
I have spent the past few weeks struggling with a heavy mood often deep in thought about CF, something which hasn’t happened to me in a long time and something I find myself incredibly uncomfortable with. I found I was withdrawing from all CF related conversations because I felt I just couldn’t cope talking or hearing about it. I just tried to focus on the here and now, and get into the Christmas Spirit.
I began thinking about how CF affects so much, I sat watching a mother feeding her beautiful new baby without a thought for things like creon or having to rush home to fit in Physio and treatments, thinking about all the things my children miss out on because of CF. For the first time in a long time I couldn’t help but think about what my life would be like without CF in it.
I was becoming so negative in my own thoughts that I knew I had to snap out of it and I started to turn it around to try and think about some of the positive things I have found since having CF in my life.
Let’s face it, no one wants CF in their life, but we have it and there’s no changing that right now and when I actually snapped out of my mood I realised having CF in my life has taught me a great deal of positive things.
CF has taught me about strength, not only a strength in myself I never knew I had but also the huge strength in those around me, more often than not, small children. People with CF have this incredible ability to see the positive in everything, they are so incredibly resilient and I have come to realise that I have often been inspired by these amazing people that whilst fighting their own private battle are always there for each other sharing their highs and lows, picking each other up when they are down.
Having CF in my life has taught me to come to terms with the fact that it’s not possible to remain strong all the time and crying, getting angry and feeling down is perfectly normal and definitely allowed, that to be strong you will often get knocked back with difficult times, but with each time being able to reappear stronger and more knowledgeable than before.
If I didn’t have CF in my life I wouldn’t have the appreciation for time like I do now. Time is incredibly precious, CF or not, no one ever knows how long they have, so I have learned to make the most of what time we do have, doing all the things we want to do, enjoying every moment whilst making lifelong memories.
Without CF I would never know the kindness and humility I have seen from the wonderful CF community I have become part of, the people who drop everything for those in the same situation, each parent going through their own individual heartache but always there no matter what, with words of kindness and wisdom.
I have seen kindness and thoughtfulness from parents have lost their own children and even in their own immense grief, it doesn’t stop them from carrying out acts of kindness for others. I will never stop being amazed at the kindness and generosity of this wonderfully selfless community.
So whilst I hate CF and have moments where everything feels so miserable and heavy, I have to look at all the positives it has bought to my life, I have a beautiful little boy who is fighting hard and probably wouldn’t be the boy he is without CF and I can honestly say that without CF in my life I wouldn’t be the person you see today.
After weeks of waiting for a bed at Stoke Hospital for Chester to trial the new Nippy Clearway machine that should help him clear his airways we have finally got a bed, it’s been a frustrating wait, but I fully appreciate the need for beds for poorly babies. To be honest this has to have been the most stressful admission we have ever had and being in a different hospital than normal I find myself feeling a little “homesick” for our usual hospital, if that is even possible. We were lucky enough to have been booked in by a nurse we met before on another admission here but I still feel a little lost not being on our normal ward with familiar faces.
We were initially told his morning that there was no bed available, however, I won’t lie, that was a godsend because at the time I had literally just abandoned my car at my mother in laws after spending 40 minutes rocking back and forward in an attempt to get my car moving in the foot and a half of snow. That adamant was I that I wanted to make it to work, I found myself stuck literally seething that I faced abandoning my car on the middle of a roundabout.
After making my way home, with my children, with no car, I set about making a plan for the next day which included getting my car, getting kids to nursery and school and then getting to work. The phone rang and I recognised the hospital number, it was a call to say a bed had opened up and I was asked to bring Chester in this evening ready to start the Nippy trial first thing tomorrow.
Knowing we weren’t just going to be 5 minutes down the road like normal I literally packed for every eventuality which meant loading my car with way to many bags. I then realised that because of the snow I hadn’t been to get his antibiotics and I didn’t have enough to last. This meant once I had got my car dug out (with the help of friends), had dropped Oakley off with his Nanny I then had to take a trip to the pharmacy, which is on a hill, with a car park at the bottom, so like an a*^#hole driver I abandoned my car right outside the pharmacy, there was no way I was chancing the car park even with the shovel in my boot.
The drive to hospital was uneventful with cars abandoned all along to route, knowing what hospital food is like I made the decision to take Chester for a cheeky McDonalds on the way in, a decision which proved to be a great CF parenting win after they decided to weigh him on admission! All those fish fingers, nuggets and chips added a few grams, win win for me!
We came to the ward with all our bags and the nurses giggled at my pillows strapped on the outside of my bag, I know too well how awful the plastic pillows are and didn’t fancy waking up to my sweaty face stuck to one so opted as I always do for my own. Nothing wrong with some home comforts (I may have also bought my own mug so I don’t have to share, maybe I am just a snob).
Chester always settles in so quickly, helping me unpack his teddy’s and pyjamas before running himself a bath and proceeding to get in fully clothed, really helpful! He’s never phased and trotted off down the corridor with his nurse to be weighed, not even bothered I wasn’t with him. I know this is a good thing, as it means he won’t ever be worried being in hospital, which given his track record is a likely reoccurring event, but it always makes me so sad that it’s something he’s had to get used to. Some children will go their whole childhood never setting foot in a hospital and it’s no wonder it can be terrifying.
The new shiny all singing and dancing, expensive machine was already waiting in our room and Chester being Chester was straight in the box having a good look, I’m trying to remain hopeful that he will behave and accept this new treatment and not throw one of his terrible twos tantrums, but if I am honest with myself I know what’s coming!
I’m now here in he dark, writing my blog with the blinds that may as well be sheets of toilet paper blowing in the draft from the window, sat on my parents bed, which I have to add is definitely an upgrade from the paper and pencils I’ve become used to, listening to Chester snoring from his hospital bed. He literally doesn’t care where he is, he can sleep anywhere, except nursery because there are way too many toys to sleep! But once he gets that bottle of warm milk his eyes start to roll in his head and before long, he’s gone (yes health visitors out there, he does still have his bedtime milk in a bottle! Shoot me now!).
I can’t help but feel a little homesick still, we’ve become so used to being around the same faces, the same routines and rules that I find myself feeling a little bit lonely. Don’t get me wrong the staff are lovely and very helpful and it’s actually great to be left alone, I guess it’s just different to what we are used to.
I often think about the amount of time we have spent admitted to hospital, just under half of his life already has been spent in one hospital or another, then I wonder what the future will bring, will all these interventions and treatments pay off, or will I just have to accept this is just the path Chester has been destined to walk?
When Chester was diagnosed, I remember the Doctors explaining about CF, telling us what we would have to do to keep him well and being able to give a brief outline of things that could happen, with CF affecting each person so differently they couldn’t tell us exactly what to expect only the possibilities. Looking back now, all the chats we had were about what we should expect from Chester, we were never really told what we should expect as the parent. I am still on this constant cycle of learning about CF and there is always something new to learn, so I wanted to put together a short list of things that they don’t tell you about becoming a CF parent.
You will find you have a sudden fascination with all things poo related (well related to your child’s poo anyway) it will be entirely normal for your daily conversations to revolve around poo and you will regularly receive pictures of other people’s children’s poo which you will be required to review and compare and comment on, as much as it sounds weird and maybe quite disgusting, I have found this has become completely normal. You will also probably find yourself looking at other children’s poo wishing that your child’s offerings looked more like this child’s. poo envy is real and perfectly normal (I think).
Although Google is not always your friend when it comes to researching CF, it does have its uses and you may find yourself doing that much research you can basically be classed as a scientist, Vertex Pharmaceuticals may as well take you on staff right now, you have it all except the actual qualifications! Before you know it you’ll be talking chloride channels, gene therapy and genetic coding. Whilst you’ll be engaging with science buffs around the world it is worth remembering that it is more than likely that no one around you that isn’t affected by CF will have a clue what you are talking about.
If your child is anything like mine, you will almost certainly become a little bit of a pro at hospital admissions (not quite expert level yet but Chester is working on it!), you will get used to sleeping on a mattress that feels like you are laying on a piece of paper which has been placed on top of a row of pencils. You will wake with your body aching like you did 10 rounds in the ring with a pro boxer and you will feel like you have visibly aged after each admission. You will find it perfectly normal to pack your “Hospital clothes”, yes, I have two sets of clothes these days, ones for “normal everyday life” and then ones for hospital admissions. Making sure you have appropriate clothing for an environment that fluctuates from hot to cold in seconds is difficult but is much needed for any hospital stay.
You will find yourself getting used to your child making the most awful smells in public, whether it be filling their nappy at a really inappropriate time (praying it stays contained in the nappy) or just a bit of wind, the embarrassment will eventually cease as you gradually get used to the disapproving looks you get and you will eventually find it funny (on the inside) watching others choking on your sons vile smells as you queue to pay for your shopping. You’ll find it easy to clear the immediate vicinity of any enclosed space and you should be reminded that on an airplane there is nowhere to run.
You will know the fat content of every children’s snack going, in fact ignore that, you will know the fat content of every snack going, you won’t need a book or app to tell you which one is laden with fat, you will just be drawn to them from here on in, you will no longer be hunting for low fat, low salt, or low calorie treats, if it’s not loaded with fat it won’t be going in your cupboard, this does not help anyone who wishes to be successful in dieting!
Your house will go from a peaceful haven to being full of awful noisy toys, trumpets, saxophones, whistles, flutes and recorders, any parents nightmare! But you will learn to embrace the racket your out of tune, tone deaf child produces all in the name of physio, you may find yourself donning your ear defence or if not lucky enough to be the owner of such items sitting with your fingers, but deep down you will be pleased that racket is shifting stubborn mucus! If you live in a semi-detached or terrace house, your neighbours may actually end up hating you.
Funny things aside there is a serious side to this as well, sadly one of them is that you will lose friends. It’s inevitable, I’ve lost count of the friends who have un-friended me, it’s made my Christmas card list shorter that’s for sure! Although it used to bother me, I don’t let it anymore, I’ve put it down to the fact some people just don’t know how to cope with CF or they don’t know what to say, but in reality people lose touch all the time when their paths go different directions, so as sad as it may make you feel the most important thing to remember is that the people you can rely and depend on and that actually matter will stick around, they will stand by you and you’ll see they are the only ones that really matter, I am fortunate to be surrounded by some of the most amazing people.
On top of this the CF community is one of the most amazing communities, I’ve lost friends, but gained so much more, I gained a whole family, you will never again be alone and you will certainly not make the CF journey on your own. There will always be someone there that knows how you feel, knows what it means to be a CF parent and completely gets it.
As I sit here watching the gentle rise and fall of my sons chest as he sleeps, I can’t help but think that despite everything, I am unbelievably blessed, I have made not only one, but two beautiful tiny humans.
Whilst I fully understand that some women do not wish to have children, and I completely respect their right to decide, there are some women who will spend their lifetime wanting what I have right here, OK they may not want the Cystic Fibrosis aspect, who does? But to be able to create their very own little beings and to be a Mother will be something some women long for but may never experience and honestly I cannot even begin to understand how that must feel and it makes me even more grateful to be sat next to this little guy right now. CF or not I am a mother to two perfectly beautiful boys.
When I decided I wanted children I knew that it would mean caring selflessly for them, both physically and emotionally, I knew that I would no longer be able to think about just me and what I wanted in life, I would be the least important person and I knew over time the job description would change and I would also become the cook, cleaner, washer woman and taxi driver amongst all the other jobs a parent is expected to do.
Along came my children and suddenly I found myself with an added job, not one which I seemed to recall being in the job description and one I certainly hadn’t planned on my ever doing, that job was to be my child’s nurse.
Of course I knew I would be expected to put a plaster on a cut knee or elbow and sit next to a hospital bed and wait for X-Ray results to show broken bones but becoming a full time nurse was not in the description.
So here I am now, a Mother nursing a child with a difficult, heartbreaking chronic condition and although it’s been a steep learning curve, I’m confident in my ability and am content that most of the time I know what I am doing and why I am doing it but I have to be honest there are often days when I really struggle with doing everything that is expected of me.
As with many other CF parents I often find myself faced with incredibly difficult decisions relating to his care, decisions that if I was a professional with only a professional interest I would find far easier. But as a person with a vested interest in his care, a lot of my decisions are clouded by my personal feelings and this makes things so much harder. I see now why patients admitted to hospital are not allowed to be treated by family members; it makes it far too complicated.
The decisions I am faced with generally have huge implications and not only affect his quality of life and how we do things now, they can also have serious implications in his future.
Making the decisions like consenting to operations and procedures is difficult. Each surgery poses a different risk and each treatment has potential side effects or long-term complications and sometimes it’s hard to know what to do for the best.
As a parent I am supposed to keep him out of harm’s way, and in a roundabout way I feel like I’ve slightly failed on that part. He should be able to come to me for safety and comfort. Yet there have been numerous times when I’ve found myself assisting the Doctors to restrain him for painful procedures, seeing his sad eyes look to me to make him safe and then realisation that I’m not stopping them is just heart breaking. Right now he’s too young to understand that I’m not doing something I want to do, rather doing something that will help him, and I am thankful that he doesn’t yet hold a grudge.
I am blessed to have recently been trained to do my child’s IVs, port access has given us more independence and a little more control over his care, but it is also a huge responsibility, with the line directly accessing his heart extreme care has to be taken not to introduce infection or air bubbles. It has to be 100% sterile and there is no room for error.
Juggling both roles is hard, I know he needs to do certain treatments, and as his nurse I have to make sure that he is doing them and doing them correctly, I have to make sure that he is getting the best start including medically, and at times that means being stubborn and pushy when in all honesty I want to just sit down and play cars, have cuddles and just be mum!
I know I am far from alone, my social media feeds are full of amazing CF Mums and Dads who are also taking on both roles. I often sit down and think about the sheer gravity of what we do, the drugs, IVs, night feeds, nebulisers, physio and ventilators and it’s terrifying, but despite this I wouldn’t have it any other way, I jump at every chance to take back some control, even if that means being jack of all trades, including my child’s nurse.
Because most of the time our children “look well”, on face value they look absolutely no different to any other child, it makes it all too easy for people to jump to the assumption that CF isn’t overly serious and easy to manage. But in order for our children to look and be well, there is a huge amount both physically and emotionally that goes on behind the scenes.
Managing treatments and medications can be time consuming and exhausting, adjusting to becoming your child’s carer as well as their parent is something parents of children with chronic conditions have to get used to fairly early on post diagnosis, but it doesn’t mean it is by any means easy.
When entering parenthood I fully accepted the responsibilities that I thought would be expected of me as a parent, what I didn’t consider was that I may find myself responsible for carrying out treatments and administering medicines that not only keep my child well in the present, but also have a huge impact on his future and life expectancy.
It’s not just the physical side of caring for a child with CF or any chronic condition for that matter that is hard work, there’s the emotional side as well. Living with CF can be likened a little to riding a rollercoaster with the ups and downs, everything can be going so well, but in a very short space of time things can go from good to bad at a surprisingly quick pace. That feeling of things swirling completely out of control is incredibly hard to cope with.
So many mixed emotions all the time, from being made up that your child has done a new physio treatment without issue to being completely gutted when a cough starts. The relief and exhilaration of a time consuming treatment ending and finding there is extra time to just be a parent and then the anger, dread and disappointment when another lengthy treatment is added to the routine.
CF affects so many aspects of our lives and at times it can feel like it’s taking over even when we try our best not to let it. Everything takes organisation and time to plan. Even something simple like a night out can take hours of planning just to make sure treatments have been done time.
I can honestly say if we didn’t have CF in our house there would be a lot more time to just have fun. I would be a little less nervous, CF has made me nervous about the silliest of things, things I completely took for granted before Chester came along. Despite this nervousness there is the need to carry on and enable Chester to just be Chester.
Without CF I would probably be a little less stressed and snappy. With so much to think about at times my temper is short, on top of life in general there’s medicine and prescription collections, appointments for CF clinic, flu jabs, sleep studies, Physio training, port flushes, and not forgetting surgical appointments.
As well as affecting my child, CF affects us as parents in so many different ways and living with CF is hard, but we are not after sympathy, we don’t need or want that, sometimes we might just need a hug, we need to know someone gets us and we need to know that we have people out there that understand some of our erratic behaviours are because of what we are dealing with behind closed doors.
Our recent holiday saw us head off on a spooky Halloween half term, Dracula themed city break to Cluj-Napoca, Transylvania. A strange destination some might say, lets face it Romania probably isn’t at the top of everyone’s must see destinations list, but as always it’s about doing something different and making it an adventure for the boys. It’s also important to me that the boys have a realistic view of the world, not everywhere looks like the Bahamas or Maldives and not everyone in the world lives life the way we do.
As with any trip the boys go on, especially as far as Chester is concerned the preparation starts a long time before, so by the time we arrived in Romania my research had been done. I looked at the local hospital and specialist centres “Just Incase” and read reports that they probably aren’t the best or cleanest hospitals around, but having identified there was a CF community I was hopeful if anything went wrong, someone, somewhere would know something about CF and in the absolute worst case, we were only there on a short break and could easily get a flight home quickly if needed.
It wasn’t until we arrived with his bag full of medical supplies and expensive equipment and I saw just how poor some areas looked that it really sunk in just how lucky we really are, and just how lucky Chester is to have been born in a country such as ours.
As we were being transferred from the airport to collect our hire car the driver mentioned a visit to a “Salt mine” is a must while in Cluj. I must admit I didn’t think about it again, a Salt mine just didn’t seem interesting or appeal to me in any way and as soon as I hear mine or cave, I instantly think pseudomonas and that’s enough to put me off.
It wasn’t until we had been around the city looking at the beautiful buildings and monuments in the old town, but also looking on in sheer horror at the state of the concrete tower blocks that make up the majority of the City that we wondered what else we could do in event of bad weather.
We had already decided that Corvinus Castle was a must for any boys on a Vampire hunt. A trip we were not disappointed by, especially Oakley who was amazed at finding some “blood” (Heinz tomato soup looking substance) on the stairs which only added to his fascination of vampires and bats and not forgetting the ‘Witches birds’(crows).
We knew rain was forecast so we decided we would think about the salt mine, I was anxious at the fact it was below ground, damp and dark and worried that it wasn’t a planned activity that I had done research on, if I’m honest I was out of my comfort zone as far as CF goes.
With Chesters track record of growing Pseudomonas it seemed like the worst place we could take him. I emailed his consultant who said the trip would be ok, and then I started to look further into Pseudomonas and CF in general in Romania. I was horrified to read that 50 per cent of children diagnosed with CF don’t survive to make it into adulthood, it angered me that in this day and age with precision medicines and treatments that half the CF population in this country would never become adults. It made me genuinely grateful that we have such a good health service and that Chester has the ability to do what half their CF population doesn’t.
I was also unnerved by the fact there is a high Pseudomonas rate amongst their CF population. This set me off questioning myself about whether or not the Salt mine would be a good idea. I hated myself for questioning the Doctors, I was angry that CF was having such a huge impact on our plans and I was sad at what I had read, I couldn’t stop thinking about how lucky Chester really is and I couldn’t help but worry about this decision.
The majority of decisions we face as CF parents impacts on our children’s health in later life, it makes me feel sick most of the time, but with most decisions I make, I have to weigh up the risk versus his quality of life and not forgetting Oakley and his need to experience different things.
The more research I did into the Salt mine at Turda the more I read about it’s positive effects of those suffering with respiratory illness such as Asthma, COPD and CF, there is even a clinic where treatments can be booked. This was great news but then it set me off thinking about cross infection and the high Pseudomonas rate, I always seem to overthink, but mainly when Pseudomonas is the risk.
After thinking about it non-stop for almost a day, and weighing up the pros and cons we decided that not only would it be an amazing experience, after all there was a Ferris wheel at the bottom of this mine as well as rowing boats, but we knew it was probably the only time we would visit this area.
I know if he’s caught Pseudomonas again I’ll blame myself and feel like utter crap, but looking further into it, he’s more likely to have caught it from another child with CF than from the mine because the mine most certainly was too cold for a bug like Pseudomonas.
I managed to keep Chester in a rowing boat without the need to shout man overboard and it was a fantastic experience that they both loved, that was until they were outside rubbing their eyes with salty hands.