All the things I wish for you….

My bed has been invaded, it’s a king, but still I find myself pushed right to the very edge to make way for my poorly boy who has snuck into my bed, literally going back to sleep the minute his sleepy little head hit the pillow. I can feel the warmth of his breath on the side my face and I can feel the rattling of his chest each time he breathes in. He’s hot and clammy, yet his little pig-sticks (the word for feet in our house) which are nestled into my side are freezing. I know he’s not well and I feel completely powerless, as I often do when CF throws us these curve balls.

Now, I don’t often allow either of my children to co-sleep, but after a night of broken sleep and with another full day of work tomorrow, I’ll honestly hold my hands up to doing whatever I need to do to get some sleep tonight.

Every time he coughs I cringe, I can’t help but picture the irreversible damage this cough is doing inside, the scarring any infection might leave behind. The invisible damage we work so hard everyday to prevent or at the very least slow down.

We have been incredibly lucky this winter, with no real cough or cold and no requirement for him to go onto his back up antibiotics, this has been (touch wood) his best winter yet! But now I find myself nervously and impatiently waiting for the results of his recent cough swab, my mind now running off to thoughts of bacteria growths and IV antibiotics. Wondering if there is something sinister down there growing, lurking……just waiting. The worry that a cough swab is negative just because it didn’t pick up the growing bacteria, is a thought always at the back of my mind.

Having made the decision to start him on a 21 day course of oral antibiotics to head off any bacterial infection, I am also drawn to thinking about antibiotic resistance, knowing Chester has already had prolonged periods of time on antibiotics it is a worry that we will start to run out of antibiotics to rid future infections.

I also find myself retracing my steps day by day over the past week, since his symptoms first started. Where has he been, what has he been doing? What and who has he had contact with, what has he touched. It’s clearly impossible to tell where the infection came from or what caused it, but it doesn’t stop me wondering if I missed something or did something wrong. Perhaps I didn’t do his physio hard enough or for long enough, perhaps I should have been more insistent that he do more.

I think about how shitty this boy has it, the things he has to go through and how I would do or give all I have to take it away. I think about all the things I want for him, the things many of us would normally take as a given and I wonder what great things he will go on to accomplish.

Having spent the day walking around like a sleep deprived zombie, I am hoping that he will settle and I will manage to get some sleep. I find myself hugging and holding him so tight, not wanting to let go, thinking of all the things I wish for him.

A brick to the face.

With several hospital admissions under our belts, we sadly seem to have become experts in the packing of hospital bags, remembering the “Comfy items” needed for a comfortable stay is a priority!

Topping my list is a decent jar of coffee, however, nothing beats us having our own pillows, cups and of course our slippers.  But as expert as we have become, no matter how many times I pack those bags, when I know the admission involves a trip to theatre it still fills me with nerves.

The purpose of this admission was to take samples from the lobes within the lungs to check for any growths, Chester’s history of growing pseudomonas has been problematic and having stopped antibiotic nebulisers at annual review in September on a trial basis, a check-up was required to ensure nothing sinister was lurking that hadn’t been captured on his cough swabs.

Following his first bronchoscopy, Chester was diagnosed with severe tracheomalacia and bronchomalacia, essentially floppy windpipe and airways, in some locations, up to 90% obstructed, which as you can imagine on top of CF is not the ideal combination, thick sticky mucus already clogging the airways, on top of severe obstruction makes an ideal bug breeding ground, and has potentially been the reason he has suffered from so many infections.

The hustle and bustle of medical professionals coming in and out prepping him for theatre helped to keep me preoccupied.  The care assistant weighing him, the nurse accessing his port and the anaesthetist doing their bit, followed by the Consultant explaining what they intend to do, how long it should take and detailing all the risks before asking for me to sign on the dotted line.

Having not needed a pre-med this time, Chester, being the independent, ‘I can do it’ little person he is, when given the choice to ride on his bed or walk to theatre, he obviously decided he wanted to walk.  Watching him trundle along in his new slippers and PJ’s behind his bed and a team of porters and nurses without a worry in the world made me feel immensely proud, yet incredibly sad.  Proud that nothing seems to faze him, but sad that this situation, whilst terrifying for most is something that he appears to be completely at ease with, like it is perfectly normal.

Sitting in the brightly lit, sterile smelling theatre with Chester cradled on my lap watching the IPad, the theatre staff bustling away behind me, checking their equipment, my nerves kicked in and my leg started to shake, I could see the anaesthetist pushing the white liquid anaesthetic into his port line and he gave me the warning that Chester would go under quite quickly.  I could feel his little body starting to slump as he started going limp, his eyes rolling, the physiotherapist who came in to watch the bronchoscopy took hold of the IPad for me before it dropped to the floor, and that was it, he was gone, fast asleep snoring.  As I laid him down on the bed fighting back tears, I gave him a kiss on his cheek and left the room, leaving him yet again in the hands of complete strangers.

I found myself trying to leave the theatre as quickly as possible as I had begun welling up, I stupidly felt embarrassed at feeling tearful and upset because he was only in for a bronchoscopy, but to me, no matter how many times I hand him over, it doesn’t get any easier.  I dashed off to get a coffee and some toast, not only because I was starving from not having had anything while Chester was nil by mouth but also to keep myself occupied, I then went back to his empty room to wait, wanting to be there when he came back.

Although the waiting felt like an eternity, it wasn’t long before he was back, fast asleep, snoring and hooked up to a SATs monitor which continuously bleeped, his face covered by an oxygen mask, the nervous wait to watch his oxygen levels rise to where they should be so the oxygen could be slowly turned down. Sat watching the numbers hovering around the 93% mark willing them to hit 95%.

I patiently waited for the Consultant to come and let me know what had been found.  The news he came with wasn’t great, he explained that despite their hope that the airways would have strengthened as he had grown, the obstruction was still there, and still just as severe, on top of that there were vast amounts of secretions in his lungs.

I felt my heart breaking all over, like I had failed him, that despite all our efforts in religiously carrying out his treatments and physio and going all out to ensure he was active, it all felt like it had been for no reason, that nothing we are doing seemed to be working.  I could see that the Consultant was disappointed that he wasn’t able to bring better news.  He advised the next step would be to discuss with the physio and our Consultant and try to devise a plan.  He left, leaving me feeling completely deflated.

I tell myself all the time not to get too complacent, because I know too well that when I have done in the past, something has come along and knocked me off my feet, but it seems I had forgotten my own rule again.  When things are going well it’s all too easy to think that we are doing well, especially when Chester has shown no symptoms of cold, flu or infection (touch wood) and he has had no bug growths, so to hear this, was completely unexpected and it served as a reminder that CF is unpredictable, that no matter how well someone can look, we never really know what is going on inside. My friend, a fellow CF mum explained that news like this, out of the blue feels like being hit in the face with a brick, and it’s so true, that is an excellent way to describe how it feels.

Despite feeling completely down in the dumps, like a complete failure, terrified again for Chester’s future, I am forced to remind myself to look at how far he has come, through the various obstacles placed in our path, each sent to remind us that CF is an unpredictable beast.  The hardest thing will be picking myself up again, but I know that I must be positive and stand by Chester ready to take on whatever we need to do to ensure that we do the best for this little guy who just keeps on fighting.

The power of positivity.

As the parent of a child with a chronic condition, I have faced my own emotional turmoil since Chester’s diagnosis.  I have often described it as a rollercoaster ride, and I don’t think I am far wrong.  I can literally go from high to low in a matter of minutes when faced with a difficult or unplanned situation.

In the early days, post diagnosis, I struggled to cope with my own negativity, I became so focused on the negatives of his condition that I couldn’t help but think of all the things that could go wrong and all the things he might not be able to do, my mind was full of worry, his life expectancy being my biggest fear.  There were even times when Chester was small I found myself afraid to go into his room to check on him through fear of what I might find and I painfully found myself thinking about life without Chester in it.  I worried so much that I felt like I was under a dark cloud that would not shift.  My negative mindset left me struggling to focus and I look back now, angry at myself that I let that black cloud take over, so many of my early memories of Chester tarnished and time lost that I won’t ever get back.

It is all too easy to fall into the cycle of worrying and asking myself “What if” and I am conscious that once I start falling into that black hole there is a long and difficult climb back up to get out.  They often say that time heals and I agree in a sense that it does, I don’t think I can ever be over the fact Chester has CF, but I think time has allowed me to accept that this is how things will be, there is nothing I can do to change it, but what I can do is make the most of what we have.  I know only too well that a negative atmosphere can breed negativity and I would not want my negativity to rub off on Chester, or on Oakley and it would be unfair of me to be the cause of that.

I am conscious that it isn’t about me at all, this is about Chester, this is something that clearly affects me but it is important to remember that in all this, he is the one living with CF and he will be the one battling with both the physical and emotional strains of living with a chronic condition.  Therefore, his perception of his condition is important and as a parent it is and will continue be my job to ensure that he remains positive and fights whatever CF throws at him.

I have put my own ability to manage and cope with how I feel down to remaining positive and I strive to show both my boys that despite everything there is so much hope, I now have the ‘He may not be able to this, but look at what he can do’ attitude and I strongly believe it is extremely important that I surround my boys with that positivity, after all the saying goes “Positivity breeds success” and I whole heartedly agree.

I am under no illusion that it can be difficult to be positive when times are hard, and whilst one person may be fortunate another may not, but the least I can do is hide the hard times from them, there is a time for me to feel down and sad, but it is not in front of them.  I have stopped myself from ‘Google research’ and I have unfollowed negative social media pages. I have also strived to find positive role models with incredible stories that I share with both boys, and in doing so have stumbled across some truly amazing humans with stories I regularly share with my boys.

The positivity I have from seeing people living with CF, doing the impossible, breaking world records and completely changing perceptions of people with CF is the much-needed boost I needed as a parent.  Seeing people like Ben Mudge and Sophie Grace Holmes sharing their fitness journeys and inspiring young people to do their treatments are just the types of role models that newly diagnosed parents should be pushed towards.

As for the absolutely incredible achievements of Josh Llewellyn-Jones attempting and smashing a world record attempt by lifting 1 million Kilos in 24 hours are just simply beyond words, far beyond what I ever expected a person with CF to be able to do and I am truly grateful that he continues to share his own CF journey with us.  If my son has half the determination Josh has displayed I will be one proud Mumma, and I will know I got it right!

I only wish I had stumbled across Sophie, Ben and Josh far sooner post diagnosis! Perhaps it would have saved me from hours of trawling through depressing out of date statistics.

They have individually helped me to be at peace with the fact that despite his condition, his fate isn’t sealed and on top of that I think it is extremely important for both Chester and Oakley when they able understand the extent of CF, to see that his condition doesn’t have to mould his future, that despite CF he has the ability to do and be whoever and whatever he wants, and that with hard work, grit and determination, success is well within his grasp.

A letter to my child without CF.

To my biggest boy,

You held my hand as my world fell apart with Chester’s diagnosis and despite trying my best to hide things from you, you have seen me at my worst. You have sat by my side through my darkest of times and without even knowing you have helped me to find the courage to face the world and see that everything will be ok.

You have sat on my lap, snuggling under an itchy blanket next to Chester’s hospital cot, you have spent nights sharing a cramped foldaway bed being woken periodically by the alarms on Chester’s monitor or the noisy nurse clattering around in the dark and you have you have waited patiently for Chester to fall asleep to be able to escape his room and go to the playroom.

You have had broken sleep from Chester’s coughing when he has been ill, you have spent far too many long and boring days sat in hospital rooms with limited access to the playrooms, making do with a hospital table and repetitive movies and activities.  You have been disappointed at family holidays and days out being cancelled due to hospital admissions and at times you have been pushed from pillar to post to allow me time to care for Chester when he has been extremely poorly.

You have coped with all life has thrown at you, you have your moments and your meltdowns but I understand that you need to let off steam, we all need to at some time or another and this is just your way.  Sometimes we are thrown into the most difficult of situations, and for someone so young you have an amazing ability to just take it in your stride.

I have shouted at you to be quiet when I’ve been trying to listen to the Doctors talking to me about Chester, I’ve told you off for trying to push buttons on his machines and I’ve yelled at you for not being careful around Chester always telling you to ‘watch his port’.  I’ve been cross with you when you have forgotten to cover your coughs or when you haven’t washed your hands and I’ve been frustrated with you when you have been impatient waiting for Chester’s treatments to be over.

For someone so small I have asked a lot of you, I have asked you to be patient and to be quiet, to be calm and to wait.  I have wished for you to grow up quicker than I should have, and I have expected you to be more mature than you should be.

Since becoming a big brother you have had to learn to share, not just toys and a seat next to me, but you have had to learn to share my time and I know at times it doesn’t fall in your favour or that at times I am distracted, but know I do my best to make sure that the time we do get to share is time you will remember.

I have always tried to shield you from the darker side of CF whether that be sending you on an ‘errand’ upstairs when I need to discuss something about it, desperately doing my best to change the subject to avoid answering your difficult questions or sometimes having to tell you little white lies to keep me from having to tell you the truth.

Witnessing the love, you have for your brother, in between the daily sibling fighting, fills my heart and I am full of pride.  I know that you will love and guide Chester and you will be there for him when things are hard for him.

What the future holds is unknown, but I know that one day your world too may be darkened by the reality of CF, you will probably have all kinds of feelings that you will struggle to deal with, just remember no matter what we have been through and no matter what we still must face, we will do it, together, holding hands.

Love you to the moon and beyond

Mummy xx 😘

The joys of hospital admissions

Aren’t we lucky to have regular memory updates from Facebook?  Lovingly reminding me that this time last year we were going through the exact same thing that we are now, admission, yearly IVs and annual review.  In fact, it is the very same thing we were doing not just last year, but also three years ago when Chester was still very diddy and constantly poorly.
Luckily rather than tantrums, I was faced with a child who was thrilled to be asked to get his hospital toy bag ready, now, whilst this makes life much easier that he is compliant and easy going with it all, as a parent, it can also be upsetting, that something most children and some adults would find extremely daunting is just a normal part of Chester’s and our lives.  So, with his Iron Man costume on and his Thomas trains secured safely in his carry case he waved bye to Nanny and trundled off to be loaded into his car seat.  Literally, not a care in the world and a sense of excitement.
Sadly, admissions have been a regular feature in our lives, and whilst stressful and emotionally draining, the majority have been reasonably straightforward, pleasant and easy.  But with every admission I am reminded of the frustrations faced during past admissions and I dread what we may encounter this time.
The first highlight of any admission or hospital appointment, is the walk in to the Children’s department.  Carefully dodging in and out of clouds of smoke being bellowed out by the heavily pregnant smokers or the wheelchair bound patients hooked up to their Oxygen.
Now I do not make a habit of judging, but I mean really, common sense! Smoking is their right and their choice; I just don’t see how people can have so little consideration for those needing access.  The doors and entrance are clearly marked as designated no smoking areas. I do always enjoy a giggle at Chester wafting the smoke saying “Ewww” or Oakley out right telling people they are disgusting, if a 6-year-old can see it is wrong so should grown adults.
Once inside it’s the other parents I then have to try to avoid, there is nothing worse than being bombarded with questions, “How come you get a private room?”, “How long are you in?”, “What you in for?” to name but a few, some get even more personal than that, and no, it’s ok Jackie, I don’t want to hear about Barnaby’s piles.
Our hospital has an amazing playroom with incredibly lovely and busy play specialists.  Our access to the playroom is thoroughly dependant on other CF children on the ward, sometimes we have to work on a rota system to allow all the children access with no cross-infection risk. Time out of his room is precious, keeping a toddler in a side room for long periods of time is hard work!  It can be easily ruined by those who think the playroom is where you send the unruly sibling who won’t sit quietly at the bedside.  Unsupervised and on destruction mode, it’s upsetting to see someone destroying toys that have been generously donated.
I think the final highlight of any admission is opening the parent’s fridge to eat the labelled Subway sandwich I purchased on the way in, knowing I wouldn’t be able to leave Chester on the ward to get lunch, only to find it gone!  Half inched by someone, why would you steal someone’s food?  I guess having watched parents filling their bags with the patients sandwiches and jars of baby food, nothing seems to surprise me anymore.
Whilst I am incredibly grateful for the NHS and the staff who look after us every admission, I am even more grateful that they spent time training me so I can manage Chester’s care myself, in the best environment for him, away from the awkward questions and most importantly knowing that my sandwich will still be in the fridge where I left it when I am ready to eat it, unless of course Chester gets there first.

Sometimes we just need a break.

Having CF in my life is constant. There is no escaping it, it’s here and until a cure is found it isn’t going anywhere, and whilst there is no taking a break from it, I took a much needed break away from everything else CF related, hence my lack of interaction, blogs and Facebook posts.

I felt my life was slowly being consumed by all things CF, so much so that it was starting to get on top of me and I was spending more time worrying about CF than I was concentrating at work or more importantly enjoying time with my boys. I was adding pressure that I didn’t need and for those that know, CF is hard enough to deal with on its own without those added pressures.

I’ve said before most days CF is far from my thoughts, but there are times I find myself wanting to scream, when the most simple of tasks is made so difficult and complicated by CF and especially when CF takes away so much.

I find myself envious of anyone who can just get up and decide they are taking their kids out for a day without any preplanning or having to orchestrate an early start to fit in treatments before going, or those who can finish work and enjoy a trip to the park with their children. I would be happy with just having time to sit down and play with Chester and Oakley and their trains and cars.

Treatments are time consuming and the majority of my time midweek before and after work is spent doing nebulisers and physio. I feel like my time is being stolen and with two children growing up so quickly every moment with them is precious.

Over the past three and a half years since CF fell into our lives there have been many ups and downs, I’ve shared many of them already, and I am in no doubt that there are many more to come.

The most important thing I’ve learned is that it’s ok not to be ok. No one can be ok all the time, it wouldn’t be normal (in my opinion) if life kept hurling things your way and you never faltered once.

Don’t get me wrong, its incredibly hard to say you’re struggling and not coping when you are meant to be the strong one, but you must! Your own mental health depends on it and when so many depend on you, you have to be well mentally and physically, otherwise what use are you?

The hardest thing for me isn’t necessarily getting the break from CF it’s managing the guilt I have for feeling I need a break in he first place, especially when I know my child never will get that break and will have to pick himself up and carry on regardless of how he feels.

So as I sit here on the train, writing my blog, drinking coffee in a rare moment of peace and quiet, I find myself looking at everything I have overcome and how far my family has come and I am forever grateful to all those who have been by my side for the past three and a half years, and who have picked me up when I’m down, have told me to dry my eyes and crack on when I’m balling and to those who have listened and supported me when I’ve needed to moan.

It’s important to recognise when things are getting too much, it’s important to act and it’s important to take some time out.

Take that break, get yourself back on track… are needed!

The month of May

I realise it has been some considerable time since my last blog, the past few months have been beyond hectic, busy with work, the boys and life in general, and if I’m honest I won’t complain, I like to be busy, it gives me a reason to not have to think about the crap things like CF.

This past couple of weeks has been pretty tough and as far as months go, May is by far the most difficult month in my calendar. I find everyday of May serves as a reminder of either how simple and easy life once was or how sad I was following the unravelling of normality after Chester’s birth and subsequent diagnosis.

In the lead up to Chester’s birthday there are the Facebook memory reminders (cheers Facebook) which are full of the “blissfully unaware”, not a care in the world, baby is tucked up nice and safe inside photographs and posts and the status updates of excitement waiting for Baby Hughes to arrive.

There are the memories I shared at the start of maternity leave in our brand new home, the new freshly washed and ironed baby clothes and Moses basket being made ready and the day trips I spent with Oakley.

I sat down on the eve of Chester’s birthday as I do every year and I found myself both excited for him but also sad that this happy celebration is always (for me) overshadowed by thinking about everything that followed. I can’t help but be reminded of how all the excitement and happiness I felt becoming a mummy for the second time when holding that new little bundle was destroyed with all the sadness I felt after he became so poorly.

Then there is the clear recollection of the night before we were scheduled for the C-Sect (no judging!) the weirdest feeling in the world dropping off Oakley to his Nanny and Grandad. Packing the hospital bags, which I’ll be honest, I had until that point neglected to do; despite having gone into hospital days before after starting with contractions. Then the memory of sitting down with the realisation that the following day the wait would be over, we would soon meet him or her and that the Moses basket next to the bed would soon have a baby in it.

Then with a blink; my baby was three! I do my best to not think about CF on his birthday but when doing treatments it’s sometimes hard to put the thoughts to one side. I take a step back and try to be positive, thinking about all he went through but overcame, all the positives CF has bought to our lives (if that’s possible)and the way it has changed my outlook on almost everything. There were moments where the usual thoughts come into my head, where I start to wonder how many birthdays we will get to celebrate with him but trying not to be negative I do my best to move on and think about all the good times.

I am reminded of him being taken to neonatal care before being taken away from me in his space-pod ambulance travel system to Birmingham Children’s hospital. Watching from of my hospital window as they drove him away and the awful feeling of complete heartbreak at being left alone in my room, without my baby and the worry that he had gone without a name.

Then there are the memories of everything that happened in between, surgery, tests, cannulas, tubes, not being able to hold or feed him, seeing him laid in a crib hooked up to heart monitors oxygen level monitors and intravenous feed and feeling completely useless.

There are many different dates that mean something in May, the toughest by far is the anniversary of diagnosis day, which even after three years hasn’t got even the slightest bit easier.

Someone recently said to me that with CF there is a clear before and after, and that is so true, I only have to look at my Facebook memories to show that.

Despite this month being as it is, I am grateful that Chester is the little boy he is today, he is stronger than I could ever be, he takes everything in his stride (most of the time when he’s isn’t throwing a tantrum) and I know that he will grow up with immense strength and determination and that is all I can ask and hope for.

May might be tough, but I’ve almost made it to the other side for another year!