“But he looks so well”

“But he looks so well”, something every CF parent will have heard numerous times when telling people their child has CF. It’s one of the most frustrating things I hear, because children with this invisible condition don’t look any different, but as I have said before looks can be very deceiving.  Yesterday during Chester’s annual review clinic, for the first time I uttered very similar words “But he’s been so well”.

I have said it many times before that one of the hardest things about CF is not being able to see what is going on inside and not being able to see what damage that is being done.

So yesterday when I was told that despite sticking rigidly to Chester’s treatment plan with physio, meds and exercise, his recent bronchoscopy showed an extremely large amount of secretions in his lungs. I honestly felt like I had been kicked in the stomach, like they would be questioning whether or not I actually do his treatments and like everything we had been doing was not enough and that I should have been doing more. I know deep down I haven’t, but I honestly do feel like I have let Chester down in some way, I am the one trusted with his care and yet here we are with this news. 

When Chester had his first Bronchoscopy last year post pseudomonas eradication treatment, in true Chester style, he was further diagnosed with another condition called “tracheomalacia” which is more commonly known as a “floppy windpipe”, this is where the windpipe collapses, and in Chester’s case it is severe, collapsing by around 80% which is why his breathing can appear noisy, a little like a 40 a day smoker.  It is beilieved that this condition has most likely been the culprit in the pseudomonas growths. With his windpipe the way it is, despite chest percussion physio Chester is not physically able to clear the secretions which in turn allows bugs to settle and grow and for secretions to build up clogging is lungs. 

The team have come up with a plan to trial a clearway ventilator machine which will blow air into Chester’s airways to open them up and allow him to move the secretions easier. This machine is incredibly expensive so will be on loan to trial it first before purchasing to ensure it works for him. They have made the decision to keep him on nebulised antibiotics which I was a little gutted about purely for selfish reasons that it adds another hour or so into our already packed schedule. 

They have also noticed that when asleep, Chester’s oxygen saturation drops significantly and they believe this also to be caused by the floppy windpipe; this may be when Chester has been more susceptible to growing pseudomonas. He will be admitted to undergo a sleep analysis and dependant on the results he may need to be ventilated on a machine overnight to increase his oxygen levels.

In comparison to Chester’s first year where we spent so much time in hospital with various chest infections, this last year was remarkably better with no admissions because he was “unwell” only admissions to treat pseudomonas. In the past 12 months Chester has only required the use of back up antibiotics where we increase his prophylactic antibiotic and add another antibiotic to help beat infection once. This was an achievement for us and I took this to be a good sign, things were starting to get easier, less meds and equipment to take with us on our travels, and now I feel like we may actually never leave the house with all the added kit and meds we are now on.


I was left a little shell shocked by yesterday’s review and angry that CF is doing this to Chester, I hate that I feel completely out of control and that I am powerless to stop it. I should be able to help him, but I can’t, and it’s the most awful feeling.  I can’t help but think that he is too young to have so many complications and I have found myself thinking about what the future holds for him.  I found myself thinking the absolute worst, I started to think about all the younger CF children I have seen lose their battle just in the short space I have been a CF parent and it is terrifying.

Last night I sat watching both boys playing together on the floor with their train set, both oblivious to the news I had been given, I had word with myself about feeling so down and realised I had to put my heartbreak to one side partly because I would hate for the boys to see me so broken, but also because I am determined that if Chester can pick himself up, smile and get on with it despite everything he goes through, then I have to man up and carry on as well. 


Yesterday was a blow and it doesn’t matter how hard it gets, I have to stay positive, I need to show the boys nothing has changed and I need to carry on helping Chester fight the fight.

This boy has had so much thrown at him and CF is much becoming the gift that keeps on giving, it doesn’t matter to Chester though, to him this is normal life, he knows nothing different and no matter how difficult the circumstances he always manages to smile and more often than not blow a kiss. 

 
 

The waiting is the hardest.

Usually I would be jumping at the chance to sit and have a child free coffee, to be able to drink it while it’s warm without one of my children kicking off because they’ve had to sit still for longer than five minutes or knocking my drink over whilst playing with their toy cars and trains. I often long to be able to just sit and enjoy the peace and quiet whilst taking in the local scenery, or what most would call people watching. 

But yesterday as I sat in the coffee shop next to an empty high chair staring at my cappuccino, I have never wanted my boys to be with me so much. Feeling a little lost that there were no sticky hands or faces to wipe and feeling a little guilty that I wish so often I could have just 5 minutes to myself to enjoy my coffee. 

Today was the sixth time we’ve handed Chester over in an anaesthetic room to a bunch of complete strangers who we find ourselves trusting with one of our very most treasured possessions. It really doesn’t get any easier, the only thing that made yesterday slightly less traumatic for me was the fact Chester was already out cold from his pre- Med so there was no physical fight to get him to sleep. As far as Chester is concerned he fell asleep in one place and woke up in another. 


Knowing both the procedures would take some time, we made the decision to wait a couple of hours in the cafe, I find waiting in an empty room with a space where Chester and his bed should be too upsetting so we choose to spend our time waiting in the cafe or the parents room or walking the corridors, anything to avoid waiting in his room. 

It is only a few hours of waiting but it’s agony, I cannot imagine what it must be like for parents waiting for children who are having timely procedures. For Chester both procedures are fairly straightforward but when the Surgeon starts to mention collapsed lungs, chest drains and perforated lungs just before the surgery whilst asking for consent, the hours of waiting feel like a lifetime and all those dreaded “what ifs” start to float round my head.

We have always been allowed to go to recovery to see Chester and yesterday was no different, it’s always a worry as we never know how the anaesthetic will have affected him. As we walked towards the cubicles I could hear his breathing straight away, and I was instantly relieved that I could hear him, his breathing was rattling and noisy but I didn’t care, he was still here and still fighting, that’s all that mattered to me.

Chester being the head strong stubborn little chap he is, was trying his hardest to sit up, despite being drowsy still and when he heard us he tried so hard to get to us, that the Doctor told me to get in the bed with him to keep him calm. There I am fully clothed in bed being pushed down the hospital corridors, snuggling with my baby and it was the best feeling in the world and right then nothing else mattered. I could smell the anaesthetic on him and I could see that he had a dressing on his left shoulder, I just wasn’t brave enough to look any closer at that time.


Back in his room we tried physio to release what we could from his lungs, the bronchoscopy had kicked up the mucus in his lungs and his cough was resembling a 90 year old, 50 a day smoker. He managed to cough up a lot and clear his lungs and airways a little which made him more comfortable. Then the regular poking and prodding, Oxygen levels, temperature and respiratory rate, putting on new probes and generally stressing Chester out part started. 

All the time he was ratty and whinging all I could think about is the fact he made it and all went to plan and that was enough to allow me to listen to the whinging and whining noises he was making and be incredibly grateful.

This was a pretty tough decision for me as a parent, to put my child through something like this, to change him forever, to give him something that straight away makes him look “different”, but having just had one day of painless and stress free IVs I know I have made the right choice for Chester.

This little one has bounced back time after time, the resilience he shows amazes me, no matter what CF throws at him he stands up to show CF who’s boss, he’s by far the strongest person I know. I can’t help but think about the path ahead for this little guy, he’s already been through so much, I really hope CF gives him the break he deserves, but even if CF doesn’t I know Chester will kick arse and give CF a run for it’s money because he’s alr day showing he’s more than capable! 

The night before port surgery. 

No one ever said parenting would be easy, but I never imagined it would be quite this hard, all the angst and worry, the endless doubt and worst of all, the millions of decisions you are expected to make as a parent. Always wondering and hoping the choices we make are the right ones for our babies. 

I have made the decision to put my son through what will most likely be a pretty traumatic ordeal tomorrow, something that I know will be painful and upsetting for him and something which he is too young to understand at the moment and I am wracked with guilt over it. I keep asking myself over and over, is this the right decision? 

I know that he needs this surgery and once the port is in, longterm it will mean his admissions are far less traumatic with no need for cannula changes every day, but even knowing this and hearing others success stories hasn’t made the decision any easier and hasn’t taken that guilt away.  

Don’t get me wrong, I’ve been so grateful to the other CF parents that have shared their stories and shown me pictures of their children’s ports and I feel fortunate to have my virtual family around me providing advice and allowing me to ask questions and I thank them for that.

As I sit here this evening having packed our hospital bags ready for the morning I find myself looking over the list of 35 odd complications the Surgeon gave me, complications ranging from Port rejection all the way through to heart problems like tamponades and endocarditis, I wonder to myself if the risk outweighs the end result. You always hear surgeons say “With every surgery comes risk” but until you are given papers with them listed it doesn’t seem so real and I never realised there could be so many for one procedure. 


I’ve spent the majority of my evening staring at Chester’s topless torso, wondering how different it will look after tomorrow’s surgery, wondering where it will be placed and how prominent it will be. Then wondering how he will feel about adding another scar to his already patchwork body. I guess only time will tell and I am hopeful that one day he will be proud of his war wounds and I will have to tell him off for showing them off to the girls. 


For now I wait and hope that his bed is still available so I don’t have to spend another evening worrying and stressing about putting my baby through another surgery. 

When Cystic Fibrosis wants to remind you it’s still there! 

If there is one thing CF has taught me, it is that I shouldn’t get too comfy because the minute I do it will throw something into the mix to remind me it’s still there lurking, there is no good time for CF to raise it’s head but sometimes it just seems to choose the worst possible time! With Chester it’s usually around the time work is manic or we have a family holiday booked. 

So often people will say “Cystic Fibrosis? Really? But he looks so well”.  I have learned to take this as a compliment rather than allowing it to upset me, and I agree on the outside he does look well but we work incredibly hard to keep him looking that way, it’s sometimes easy to forget about CF because he does look so well.  It’s the underneath where we can’t see that is a whole different story and that’s the scary thing about CF.  It’s the not knowing and not being able to see that is the hardest. 

A week ago the decision was made to take Chester off his remaining prophylactic antibiotic, this is pretty much routine when children with CF turn two.  This antibiotic is something he has been on since birth and although very daunting, he has been well and not needed any back up antibiotics in quite some time, he has only needed antibiotic treatments to eradicate pseudomonas which his prophylactic antibiotic wouldn’t really touch. 

I saw this as a step forward, I see that he’s getting bigger and stronger, and I felt quite relaxed and proud of the fact that this is the first time since his birth that he has been antibiotic free, another step towards “normality” for us. 

So I shouldn’t have been surprised that given it’s September the season of coughs, colds and flu that not even a week later CF rears it’s ugly head to remind us that we are perhaps getting a little too comfy.   It started with a sore throat and now he has developed a terrible cough that is visibly painful for him.

All I can think about is the damage and scarring this constant coughing may be causing to his lungs.  With annual review not far off we will get to look back over this years’ treatment and compare his chest X-rays from one taken a year ago, always an anxious time for us and quite hard hitting for some when they see the damage CF has caused in the past year.

His awful sounding bark kept him awake last night and that coupled with a high temperature made him generally unsettled and he started to pat his own chest indicating to us he wanted and needed physio, so at 3am there we are like zombies giving him physio in the hope it will ease for him to catch his breath and get some sleep.

After some pain killers and chest physio he finally went to sleep sprawled on my bed resembling me after a night out drinking. 


I wasn’t overly content with how he was doing and with surgery due at the end of the week I felt I needed to check with the Doctors about starting him back on antibiotics.  A call to our local assessment unit where we are fortunate enough to have open access and I find myself talking to a staff nurse that knows Chester, I don’t know why that surprises me when he’s spent so long there and after a conversation with the on call registrar Chester is back on antibiotics.


A few doses and he should be back on track for his port surgery on Friday and there it is a quick reminder to me from CF not to get too comfy. 

When life with CF starts to feel normal.

In the early days after Chesters diagnosis I would often wonder to myself if life would ever feel normal again. I would often think about how easy it had been with just three of us, not that I in anyway wish that we hadn’t had Chester. I knew having a second baby would be hard work but I had never imagined just how hard.

I would look at other people I knew around me having their second and third babies and would think to myself, how much easier it would be if CF wasn’t a factor and I remember thinking that I couldn’t cope, thinking I wouldn’t be able to do it and that it was all too much.

Fast forward two and a bit years to my life now and I can honestly say that for the first time since Chester was born life feels normal, whatever normal is? I don’t feel sad and miserable all the time, I don’t look at Chester and just want to cry (not all the time anyway) and I don’t have that feeling that something awful is going to happen hanging over me all the time.

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I look at what we have achieved, how far he has come and how happy he is, oblivious of the fight he is taking on, I look at all the wonderful memories we are helping to build and life really feels good.

Don’t get me wrong we have to be super organised and plan ahead, and still be careful with things we do but CF has become routine and normal to us, I don’t find it all so daunting, well not all the time.

He is a child who will get into mischief, he will drink rain water from the plastic cup that’s been covered in mud in the garden for weeks and he will pick food up off the floor and eat it, this is all part of growing up, I’ve learned to take a breath not stress about it and carry on (until cough swab time and then I hold my breath waiting for the results).

Doing his treatments has become normal for him as well and giving his meds is like second nature, we don’t even think about how much he has to have we just know.

I see newly diagnosed parents and I honestly feel their pain, it’s an awful place to be, and when I think back to those days and how it made me feel it does still make me incredibly sad and I still feel sick about it, and if there is one thing I could say to them is that it will get easier and life can and will be normal again, it just takes time.

I guess I’ve come to realise that this is what will be normal for us and everyone’s normal will be different because everyone’s expectations of how things should be will be different. No ones path is the same and everyone will have their own difficulties to overcome, for us that difficulty is CF.

Now don’t get me wrong there are times when CF still kicks me in the gut to remind me of it’s presence but more often than not I just deal with what’s thrown at me and carry on without a second thought, because if I stay and dwell on it I am letting CF win.

Our recent holiday was the first time in a very long time where I have hardly thought about CF and haven’t been stressed out by it, we carried on as normal doing all the same things as everyone else, swimming in the lakes and pools, playing in the children’s play areas and I am happy to say CF didn’t get a second thought.

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We had an amazing time despite breaking down on our way home and the memories we made were priceless and to anyone looking in we were a perfectly normal family, nobody was any the wiser and we didn’t have to talk about CF to anyone, there was no need and it was brilliant.

It’s taken time but we are headed in the right direction enjoying life and not letting CF win, there will be bumps in the road and at times there will be setbacks but for now Life has become normal.

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One step closer to Ironman

It’s been quite a while since the discussion of Chester having a port was first raised and this week we had our first appointment with the surgeon who will be fitting his port.

Sat in the hospital waiting room we were scanning the room like meerkats who are on the lookout for enemy in their territory for any likely CF patients, we even went so far as to ask the nurse on the nurses station if there were any known CF patients there, which of course she said she didn’t know.

The unease of not knowing if there was anyone with CF and knowing that the surgeon we were due to see fits the majority of ports including those for CF patients in this area resulted in us asking an array of parents if they had CF children with them. Luckily all answered no so we were left with that warm fuzzy feeling that Chester and others were safe. 

We were called through to see the consultant and almost as soon as we walked into the room the flick was switched and both kids turned from little angels to…..well, I don’t think it would be appropriate to use the word I actually want to use but let’s just say they weren’t on their best behaviour. 
Chester immediately climbed up onto the consultants looking like butter wouldn’t melt, but those looks didn’t fool me and I knew straight away that he was just trying to get closer to the keyboard and phone as he does in CF clinic.
The surgeon showed us the port and explained in detail how the surgery would work and how it would be fitted. We knew he would be having a bronchoscopy as well so he explained this would happen first, then the port fitting. It has also been decided that he would remain admitted for two weeks of IVs which I won’t lie I am dreading, but they will move him from the hospital back to our local one once he’s good to travel. 

The port looked significantly smaller than one I had already been shown and I was a little happier that despite him having a slight upper body it wouldn’t protrude as much as I first thought.
After running through an extensive list of potential complications, approximately 35, I was finally asked firstly if we still wanted him to have the surgery and secondly how did I feel about it myself. 
I won’t lie, it’s taken time for me to come round to the idea of Chester having this port, and my reasons for not wanting it are purely selfish. I have also thought long and hard about how I have to be so careful about the way I cope and deal with these things, my two boys are always watching me and I need to show them both that it’s no big deal, that it may be different but it’s superhero different and that he should not be ashamed or embarrassed about it.  

But it’s now booked, next month he will be having his port and he will have another scar to his already growing collection. In all honesty he already has so many scars, what’s one more? I have often seen people staring at him when I take him swimming, and I have learned not to care and I learned to look at it that those scars are marks of huge hurdles he has overcome and they are something I am proud of him for and one day I hope he will be proud of them too. Until then he is one step closer to being ironman and that makes him even more of a superhero in my eyes. 

CF doesn’t take a holiday. 

The summer holidays are well and truly here, families everywhere are packing up and taking their children on holiday. Whether jetting off abroad or setting off on a staycation camping trip, planning, prepping and organising is underway and people everywhere are getting ready to go and make memories with their babies and enjoy some quality down time away from work.

We are just under a week away from our annual European road trip and with work and hospital appointments this week, I am already panicking that there is not enough time to get everything ready.

Packing to travel with kids is a nightmare and stressful at the best of times, making sure you have packed the right clothes not to mention enough of them and making sure you have things for them to do on the journey are just some of the things parents have to think about.

Packing for a child with Cystic Fibrosis only adds to that stress, so many additional things to think about can make it hard work. I find I am wired until the minute we actually lock the house up and set off on the road.

Admittedly things have gotten slightly easier now that Chester is on a break from two of his nebulised antibiotics and the fact he is mainly on tablets and capsules instead of the liquid medications.
From our first trip abroad!

I must admit I am incredibly impressed that someone so small can swallow tablets like he does without a care, sometimes swallowing as many as 9 tablets in one sitting. Tablets makes the worry of having to use ice packs, cool bags and fridges somewhat easier.

Trying to work out how much medication to take is always one of the stresses, I like to take enough that if a bottle is lost or in the case of the liquid ones, knocked over, we don’t have to stress ourselves out with an expensive and difficult trip to the local doctors for more meds.

Then there is the question about which back up antibiotics to take ‘just in case’. CF likes to be unpredictable and I like to be prepared so we have our back ups on hand most the time.

With all this in mind we have to plan ahead so we can get the repeat prescription in time because you can bet your bottom dollar the time you need it ready on time, there will be an item out of stock and left owing which can mean traipsing around town trying to find a pharmacy with the item in stock.

We then need to think about his equipment, making sure we have the nebuliser and spare parts, plus his Physio items like pep mask and blowing activities to keep his lungs active while we are away. CF doesn’t take a holiday so no matter where we are in the world his treatment doesn’t stop or change, we just have to adapt timings to make it fit with our holiday plans.

We have been known to do his percussion on the Chunnel in our car, sat on a sun lounger next to a pool and whilst chilling under a sun brolly on the beach in the south of France. It has to be done no matter what and we have become used to the odd looks we get whilst “beating” our child.

With Chester we have to remember extra changes of clothes because of excessive sweating and leaky nappies, extra salted snacks due to salt loss and in extreme temperatures we have had to make sure we have a prescription for sodium supplements just in case he refuses salted foods or snacks.

We have to make sure we have the right insurance which covers every thing we need, replacement meds, medical expenses and medevac to the UK if required and we always carry his Med docs including latest clinic report and contact details for our team back in the UK just in case.  As you would expect of a military mum this is all filed in order in his designated CF folder.

Our holiday has already been planned and prepped around what Chester can and can’t do safely, we have evaluated risks and have looked at activities that are safe for him. We have already carried out an online recce of local doctors, hospitals and respiratory units and have even checked the local respiratory doctors online CV out. Some may say this is over the top but in my line of work I have to be organised and this organisation is mirrored at home.

Once Friday comes and the front door gets locked I will breath a sigh of relief that we managed to get on the road and will be hoping that all the important stuff has been packed and that I haven’t forgotten anything.

Then when we arrive and I’m sat sipping my large glass of chilled wine I will able to relax and start enjoying my holiday.

Another CF anniversary and milestone.

When you have children, each day means celebrating anniversaries and proudly watching them reach new important milestones, whether it’s catching them as their legs buckle having taken their first steps or hearing them utter their first words, desperately hoping to hear the word Mamma as opposed to some profanity they have probably heard you say a hundred times under your breath.

Every anniversary and milestone is just as important as the next and I have found where CF is concerned we have some truly odd anniversaries and milestones to celebrate.

Today is no exception, and is yet another anniversary that CF has given us, on this day 2 years ago we finally got to take our little man out of Birmingham Children’s Hospital and head home for the first time, we had our first night at home and I won’t lie, I was exhausted after the reality of the 2 hourly feeds on top of all the CF care had kicked in.

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Chester’s first car ride

Today also marks another milestone, after 3 months of Pseudomonas eradication therapy consisting of Ciprofloxacin oral antibiotic and inhaled tobramycin antibiotic, which he was prescribed following his disastrous failed IV admission in April, Chester has finally finished this course of treatment and has so far, touch wood, come back with negative cough swabs, meaning (we hope) that the treatment has worked and the Pseudomonas has gone (either that or it is lurking and has avoided detection on the swabs that have been taken)

I can’t say I will be sorry to say goodbye to this round of treatments.  Any parent that has had a child on Ciprofloxacin will appreciate how difficult it is to get the greasy stains of the cipro out of clothing when they decide they don’t want to swallow it and proceed to spit it down their nice clean clothes.

I certainly won’t miss running for cover when the sun comes out and I haven’t packed his factor “the sun ain’t getting anywhere near him” sun cream.  With an imminent trip to Italy in the sun will now be much easier!

For those that have never seen cipro it comes in two bottles one a greasy, oily thick liquid, the other granules, a little bit like sand.  The granules get tipped into the liquid and get mixed together, but they don’t dissolve leaving the antibiotic with a gritty texture.

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Ciprofloxacin 

The end of this treatment also means the twice daily (although not every day) fight of him having his nebuliser is over for now, which alone will save us about half an hour to forty-five minutes a day in treatments.

When the treatment plan was coming to an end, the new plan was already being discussed and made.  If there’s one thing I have found it’s that life as a CF parent fits in well with the fact I like to have plans for pretty much everything.

So the discussions and planning started with Chester’s consultant to stop the nebulisers and the oral antibiotics at the end of the treatment.  The plan was that he would be without the antibiotics for a month before being scheduled for a bronchoscopy in September.

The bronch will check that the Pseudomonas has gone and that he isn’t growing anything further, they will also fit him with his port at that time to save him having to have a second procedure and general anaesthetic.

Throughout the planning there was no talk about him starting back on Flucloxacillin; his prophylactic antibiotic, now I know that at aged two most CF patients stop taking this, but we had not discussed this, and as much as I would love to see him antibiotic free knowing he has been on one type of antibiotic or the other since birth, I found the idea of him not having any quite scary and to me it also signifies that he is getting bigger which for a parent, CF or not is always bittersweet.

I know that Flucloxacillin only offers a certain amount of protection; and certainly not protection against pseudomonas, I just couldn’t quite believe the day had come that that the “security blanket” antibiotic would be taken away.

The final discussion took place and the decision was made eventually that he would remain on flucloxacillin at least until after the bronch, I think I may have actually said “phew”.

The hope is now that he can stay pseudomonas free and that the bronch shows no sign of it or anything else nasty, then he will be taken off all antibiotics and be completely antibiotic free for the first time ever, which will be a scary but another amazing milestone.

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The dreaded question.

“Is Chester going to die” the question I have always expected might be asked and the question I have been dreading, and it caught me completely off guard because the person asking that question is Chester’s five year old brother Oakley. My only saving grace at that moment in time was that I was washing up, so my back was to both boys, neither could see tears welling up and the look of sheer terror that was now on my face.

And as Oakley does so often he stood there patiently waiting for an answer to his question. I couldn’t look but I could hear him fidgeting.

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I honestly expected a few more years before having to answer questions like this. My spare of the moment answer with a very shaky voice was “Yes Oakley, one day Chester will die, because everyone dies, no one lives forever” in hindsight maybe not the most appropriate thing to say to a five year old but with very little time to think it was the first thing that came out of my mouth.

We have always been very careful not to talk about Chester as if he is ‘ill’ or ‘poorly’ except for the times when he has actually been unwell. It may sound odd, but we don’t really see him as “poorly”, even though I often find myself saying “He’s well” when people ask how he is doing, when what I should be saying is, he’s fine.

I think it’s important that Oakley sees him as he does any other child. Now of course Oakley sees us doing physio and giving Chester medicines so we have already had to explain this but in his young years and naivety he still thinks it’s normal and every baby has this treatment.

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He understands that Chester has to have physio and a very basic idea of why we do it and he often asks why we can’t just take the bugs out of his lungs. Trying to find more simple child friendly ways to explain things is not always easy.

So back to that question……I noticed that he was still quiet, as if sat waiting for more of an answer or even more worryingly was planning his next question.

Luckily this time he was content with my answer as he didn’t ask anything else, although I am conscious that could have been just that his mind had strayed onto something else. But knowing these questions will be asked again is incredibly hard to take.

The hardest part when it comes to questions about CF is the complete uncertainty and unpredictability of it, there are questions we will never be able to answer, because we just don’t know. There are so many uncertainties, every person with CF is different, affected in different ways with different severity so some questions are just impossible.

Then there’s the worry that one day that person asking the questions will be Chester himself, this completely terrifies me because we will have to contend with questions that will be absolutely heartbreaking to answer and with the ability to google his condition we will have to be completely honest in our answers.

All we can do is hope that by the time those questions are asked the much needed breakthrough in treatments, which I believe we are on the verge of hearing about are a reality or even better we can tell him he used to have Cystic Fibrosis.

 

“I bet it’s one of those made up conditions”

I’m not normally one for theme parks, I won’t lie they are pretty much my idea of hell! There’s the extortionate admission costs with some places even charging for car parking on top!

Then there’s the rides that aren’t included and the overpriced gift shops that you can guarantee you have no way of avoiding. Add on top hyperactive over excited children, endless queues and children going into meltdown when they get told they aren’t quite tall enough to go on the ride.

Despite all this I recently decided to treat the boys to a day out at Drayton Manor park, partly because it’s not far from where I live and also because Chester adores Thomas the Tank.

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Now that Chester is 2 and being disabled he got into the park and was given a wrist band and a card which entitled him to queue with other disabled children at a separate entrance and get on a few of the rides quicker.

It was a warm and sunny day which was fantastic, but also problematic for Chester as the warm weather not only makes him sweat a lot and loose salt, the ciprofloxacin antibiotic he is currently on reacts badly in the sun causing sun burn and rashes even with minimal exposure.

Being able to ‘queue jump’ meant he could enjoy the day without any risk to his health which was brilliant. That said we didn’t need to use this on every ride as some rides didn’t have queues.

To start with I didn’t really want to use the queue jumping ticket, purely because I didn’t want to draw any attention to Chester but as the queues were getting longer and the day hotter we used it more.

I was absolutely gutted to hear people making comments and passing judgement over me and the boys as we queued at the disabled entrance of the rides.

I noticed an older lady who was talking to what I assumed was her daughter and granddaughter, was pointing in our direction, I overheard her saying that there was clearly nothing wrong with Chester’s legs so it was probably one of those “made up” conditions people these days use.

I am pretty sure people and doctors don’t just “make up” conditions!

I was really quite hurt and I almost felt like I had to justify why I was stood where I was. I was also hoping that Oakley hadn’t overheard her.

Who makes judgements like that, I was appalled and couldn’t help but just stare at her, she must have realised I had overheard her because she started to look a little embarrassed, but I just kept staring in complete disbelief.

Sadly, this wasn’t an isolated incident and she wasn’t the only person who felt the need to make such rude and hurtful comments, to the point I contemplated leaving, there’s only so many times you can hear people talking about you as if you are a fraud, with comments like “they’re clearly blagging it”, “he looks perfectly fine to me”, “people these days do anything to queue jump”.

But above all those comments the worst thing I heard all day was from another child and that was “I wish I had something so I could get one of those bands to jump the queue, it’s so unfair”. I found this really sad, especially when the parent made no attempt to talk to the child about what they had said. Had that been my child I would have had to say something. Let’s face it I’m sure anyone with a disability would gladly hand that over with their queue jumping ticket to be disability free!

Despite being made to feel like a complete fraud, which of course I am not, I stood my ground, I was determined that these people wouldn’t ruin mine and my boys day. All that mattered was that my boys enjoyed themselves, who cares if they stare and talk.

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I just a find it sad that people could make such a judgement, just because you can’t see a visible disability it doesn’t mean it’s not there. I get that Chester looks so well, but looks can be deceiving, inside where we can’t see he’s putting up a huge fight.