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…..you 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!

Blindsided by CF

Having been so incredibly busy lately at work (hence lack of blogs) I have managed to keep the majority of CF related thoughts far in the back of my mind.  I have to admit, I have found the key to it all is keeping busy, both in and out of work, allowing me to think about other things and carry out CF duties like they are routine, without a second thought.

Today was a slightly different story.  Clearly CF felt I was perhaps getting a little too comfortable and whilst out for a family meal to celebrate Mother’s Day early, I found myself completely blindsided. The end result was the need for me to excuse myself from the table in order to go to the ladies and cry.  The tears unfortunately started before I could get away from the table because the waiter was blocking my exit which meant awkwardly that Oakley had already clocked me and begun to question what was wrong.

It’s funny the things that set me off and tip me over the edge, sometimes it can be a song on the radio, for me it is often James Bay or Nora Jones songs that we played to Chester in the Neonatal unit when he was really poorly that take me back to those difficult days and other times it could be a pre-CF or as I like to call it a “Blissfully unaware” memory in pop up in my Facebook memories (Thanks for that Facebook!) today however, was something completely innocent and unexpected.

There we were sat enjoying our meal, I have to admit I was cringing at the two toddlers from the table next to us who were rolling around on the floor licking the dirty carpet.   I noticed three women and their small babies were being seated in close proximity to our table, and my first thought was the hope that my children who were actually for once sat to the table lovely, wouldn’t suddenly change into their feral alter egos and cause havoc, which would in turn mean me getting that “My child will never behave like that look” from the new mothers with their sleeping babies (yet to experience tantrums).

I overheard them talking about what they thought their babies might be when they grew up, and suddenly there I was broken.  Every parent wants the best for their child, these women were no different, but whilst they were sat their wondering if their child would be a Doctor or a Scientist, a bin man or a butcher, I found myself thinking I just want my child to be alive when he grows up.  I want the best for both my boys I would love for them to be Doctors or Scientists, or in fact anything that makes them happy.  But just now, at this moment in time, having seen so many young ones loose this very fight and with no clear certainty for Chester just for him to be able to grow up would be all that I would wish for him.

I don’t think I am alone when as a CF parent I find myself wondering what his future holds and wondering how long will we have him for, and although I am positive and excited by the medical and technological advances, I find myself getting more and more frustrated, wondering what kind of world we live in that we are having to fight as hard as we are for medications that have the ability to help people with CF lead longer and more comfortable lives.  I cannot get my head around the fact that these drugs are out there, ready, and already being used in other countries, but that some can’t have them, because someone somewhere not only put a price tag on them, someone then refused to pay, it just doesn’t make sense.

I want a day to come where I can sit down with my boys and have that conversation about what they want to be when they grow up without feeling physically sick about it.  I want for both my boys to be able to grow up and be something.  I can honestly say it won’t matter to me what they want to be as long as they both have the chance to follow their chosen path.

Embracing the suck for a year!

Today embrace the suck is celebrating its first Birthday!

It’s official, I have been bombarding you with details of the emotional rollercoaster that is my life for a whole year, filling your social media feeds with tales of poo and vomit, tears and tantrums (both mine and my children’s – the tears and the tantrums that it is!).

I made the decision to start my blog because I felt I needed some way of being able to express how I felt about different aspects of my life after becoming a CF mum and I needed somewhere I could do that without having to physically talk about it, because actually talking about it, even now, almost three years on is still hard.

I also wanted to show that life as a CF parent isn’t all doom and gloom and I don’t need people to feel sorry for me and more importantly that even with a CF diagnosis life can be “normal”, just a different type of normal and whilst it can be difficult to cope with at times, and whilst there will be times CF will get you down, the good times will far outweigh the bad.

I have to admit, I never really expected anyone to read my posts and I certainly never expected that they would reach so far, I am astonished and humbled that my 47 blogs over the past year have been read by a whopping 22,500 people across 37 counties, which is just incredible.

I have been on the receiving end of some truly lovely comments and have been contacted by other parents who share the CF journey with their own children and I am comforted to know that I am not on my own in all of this, and if my blog has helped just one person to cope better following their own child’s diagnosis, whether it be CF or something else, I feel like I have accomplished something very special.

I’ve learned that I am far from alone, that the things I go through and how I feel are all completely “normal”, I’ve learned to accept that where there are good times there will also be more difficult, testing times, but that I have the ability and strength to get back up dust myself off and start again.

I hope my posts have helped to answer questions that people may have felt they could not ask me and perhaps helped to explain the rationale behind some of the odd things I do or my strange reactions the to certain situations, like running a mile at the sight of something as basic a mud kitchen.

I hope I’ve managed to give an insight into my chaotic world, for people to read about what goes on behind closed doors and in doing so has made people understand and be more appreciative of the fact that no one ever really knows what others may be going through.

Life with CF is never straight forward but when is life straightforward for anyone? So as long as I can stay strong through the bad times, laugh during the good times, and enjoy life with my boys, making memories that is all that matters to me.

I’ve come to realise that I have the most amazing people around me, my family and friends and a community of other CF parents with whom I share this journey all of who I am incredibly grateful to for the on-going support I receive. I am blessed and am more than aware that despite my life at times being a bit harder than I would like it to be, there are far more people out there worse off, and if Chester can wake each day with the sheer determination he shows so can I!

Thank you for your continued support, I will continue to Embrace the Suck!

Though we are small the CF community is showing itself to be mighty!

When Chester was diagnosed and I became a CF mum, I became part of a much bigger family, a family of strangers forged together by a common enemy, Cystic Fibrosis.

We are a family that for the most will never meet and our children will never play together. We may be a relatively small community in the scheme of things, but this does not deter us, though we may be small we are proving to have a huge voice!

As a family we know the highs and lows, we live them too, we know the heartbreak and sadness that each of us has gone through and continue to go through daily. We know the pain, the torment and the guilt, we’ve probably all felt it at one time or another.

We are there for each other no matter what the time of day or night, we standby each other ready to pick up those who fall, with kind words, optimism and advice, always virtual counsellor ready at the press of a key. We are there for each other when our children are sick, to offer comfort, sometimes in the darkest of hours and we are there to rejoice in others good fortune, because that’s what this family does!

We have determination like no other, taking on challenge after challenge in our children’s names, finding strength each time to continue because we know our children have no choice than to get on with it. We dig deep to find the strength to take on the biggest of battles and we have the will, to want, to win and we do all this side by side, together every step of the way.

This community has been waiting for something special, for something to change CF, some have already waited too long already, so to be told that something is “Too expensive” and “Not cost effective” just isn’t going to work, you won’t be surprised to hear that we aren’t prepared to take that as an answer.

We have united in our fight for access to Orkambi, and we won’t rest until the negotiations start and a deal is struck, we are shouting louder than we ever have before and we are going to be heard!

Seeing this amazing team ethos and concerted effort by all those affected by CF and their friends and families has made me proud to be a CF mum and has restored my faith in humankind, that even when people are at their busiest in life, they can take two minutes out of their day to support our quest to get Orkambi for our children.

Like Chester there are many people in the CF community that possibly won’t benefit from Orkambi, but to us that doesn’t matter, we are family and we fight for all our children, one in all in!

It’s a fact that Orkambi is been proven to slow lung function decline and reduce exacerbations and is the first drug to actually treat the root cause of CF instead of treating the symptoms, this is a huge breakthrough and has bought much hope for people throughout this family. It’s approval also paves the way for future pipeline deals for other medications compatible for other mutations which essentially means one day Chester could get his cure.

All we want is for our children to get what they need, they didn’t ask for CF and fighting for them is all we can do. These beautiful children deserve to live their lives free from hospital admissions and from hours of physiotherapy and they sure as hell deserve to be heard and we will make sure they are!

Becoming a CF mum was never my choice, given the option I would never want to be a CF mum, but I am and for now I can’t change that.

One thing is for sure, that for a condition that can at times be isolating and lonely, I’ve never felt so surrounded by such wonderful people.