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.

A day in the life of a Toddler with CF

To me, diagnosis day and hospital admissions aside, this period has to be one of the most testing for me as the parent of a small child with CF, not only does he want to eat everything in sight except what I actually make for him (which I guess isn’t all bad) but I find he is now much more independent, headstrong and a lot more mobile, I am forever moving things higher out of reach, a change from my first child who must have just been incredibly lazy because he hardly moved.

I don’t doubt I am dealing with all the same problems any other parent would face, from the toddler tantrums, watching my once quiet and reserved baby boy become almost monster like, throwing himself around on the floor screaming in a rage, this coupled with the fact he has quite recently learned to say “No” mean I am hearing “No” pretty much all the time.

The typical food games toddlers like to play have started, refusing to eat anything I put in front of him, with a shake of his head he pushes every meal away.  Now in an ideal world I would not be quite so pushy, but having lost a large amount of weight recently,  I know how important it is to put some fat back on him.  I find myself going back to the old tricks of adding cream, butter and cheese to everything I possibly can in the hope he eats something, even just a little.  I even find myself buying him a cheeky McDonalds when his older brother isn’t around and desperately trying to fill him up on fast food snacks before going to clinic to be weighed just to be able to add a few grams on.

Despite refusing my culinary delights, I often find that while my back is turned he has raided the fridge and can often be found in the front room with the odd block of butter or a chocolate bar he has stolen.  I know to most this would be of concern, however, I find myself looking to see just how much butter or chocolate he has eaten, feeling slight nauseous at the thought of him chewing on butter like he would a choc ice and a little worried about working out how much Creon I should give him.

Luckily this time I caught him before he ate it!

Talking about Creon, anyone know how many Creon you need for a worm and some additional soil? No, me neither! This is why Chester is not left unsupervised in the garden……ever!

As we all know, physical activities are fantastic for people with CF but I am beginning to wonder if all the activities he takes part in, such as bouncing on his trampoline, running games and “play fighting” with his brother have given him extra strength, I swear he’s almost superhuman,  it never ceases to amaze me how physically strong this boy is.  Which is fantastic until it comes to him becoming the toddler that doesn’t want to go where you are going.

The majority of outings end the same way, me carrying a screaming toddler under one arm.  He has simply taken to lying down on the floor and refusing to move.  Let’s face it, any CF parent’s worst nightmare right there, all I can think about are the germs on the floor, never quite knowing who or what has trodden that path before.  But any parent of a toddler or older will know how difficult it is trying to pick up a child that has started lifting up their arms to make getting a grip on them impossible and with having mastered making himself extra heavy it just adds to the embarrassment of being a fully grown adult, physically incapable of lifting up the little person on the floor.

Just a few of our wonderful trips out!

Then with CF comes the pill taking, and refusal to do so.  I find everything becomes this game of “How many times in one day can I say No?” and to be honest, I have lost count by the end of breakfast most days.  Up until Christmas Chester couldn’t say a single word, Christmas day started with Mamma, which was music to my ears, but soon overshadowed by him saying No to everything.

Anyway I digress; Chester has around 30 tablets a day, vitamins, antibiotics, antacids and enzymes, all with their specific purpose, the majority he has to take with food.   But being this power crazy, stubborn little being, on occasions he doesn’t want to, so I find myself using the good old trick of parent bribery, and this see’s Chester looking smug in the knowledge that he will get that milkybar dessert after his dinner because it is already on the table!

My mother in law often says she thinks Chester has been on this earth before because he just seems to know, and I am starting to think she is on to something.  Needless to say, Chester takes his tablets and will have at least one high fat mouthful of food which is a win for me, even though the smug toddler thinks he has won!

So with toddlers comes potty training, what a delight!  After “Poogate” last week which saw Chester trying to change his own dirty nappy, by smearing poo all over the floor, his teddy bears, his bed and in around 15 nappies which he had used to try and clean it up, I can’t say I am looking forward to this stage.  We have still yet to get his movements to an acceptable level per day, and he currently goes to the toilet, a lot, and although he is showing signs of wanting to use the toilet.  This area of parenting is the one I am dreading the most, especially with a beige carpet, let’s just say it won’t be little nuggets of poop we are cleaning up!

To me, CF is just a part of who Chester is, I wouldn’t say I have come to terms with it, because I don’t think I ever will, and whilst CF throws other factors into things we do, and sometimes shapes how we deal with things, I am keen to remember CF or not, he is a toddler first and I have to try and step back and let him learn for himself.

An average 0430 hr wake up call from Chester who has “tidied up”

New Year, blank page, same CF.

As the year ends and the blank pages of the story book for this year opens, I find myself full of mixed emotions, for most it’s a fresh start, for me, it’s still the same CF. That said, I feel that glimmer of hope that this could be the year technological advances take us one step closer to finally being able to say our child used to have CF. Sadly I find it somewhat overshadowed by a deep sadness that has come from seeing far too many little ones pass away this past year, their fight cut short too soon and the feeling of helplessness at the apparent lack of progress to get them the precision medications they need.

I struggle when I think about the heartbreaking pain and the sadness of the parents who have lost their beautiful children and I cannot begin to comprehend the grief they face now. I only know the awful pain I feel in my dreams when CF takes over causing tragedy in my sleep, a reoccurring nightmare I have and even though only a dream it often feels too real, waking me up in tears and an awful sickly feeling.

I have spent the past few weeks struggling with a heavy mood often deep in thought about CF, something which hasn’t happened to me in a long time and something I find myself incredibly uncomfortable with. I found I was withdrawing from all CF related conversations because I felt I just couldn’t cope talking or hearing about it. I just tried to focus on the here and now, and get into the Christmas Spirit.

I began thinking about how CF affects so much, I sat watching a mother feeding her beautiful new baby without a thought for things like creon or having to rush home to fit in Physio and treatments, thinking about all the things my children miss out on because of CF. For the first time in a long time I couldn’t help but think about what my life would be like without CF in it.

I was becoming so negative in my own thoughts that I knew I had to snap out of it and I started to turn it around to try and think about some of the positive things I have found since having CF in my life.

Let’s face it, no one wants CF in their life, but we have it and there’s no changing that right now and when I actually snapped out of my mood I realised having CF in my life has taught me a great deal of positive things.

CF has taught me about strength, not only a strength in myself I never knew I had but also the huge strength in those around me, more often than not, small children. People with CF have this incredible ability to see the positive in everything, they are so incredibly resilient and I have come to realise that I have often been inspired by these amazing people that whilst fighting their own private battle are always there for each other sharing their highs and lows, picking each other up when they are down.

Having CF in my life has taught me to come to terms with the fact that it’s not possible to remain strong all the time and crying, getting angry and feeling down is perfectly normal and definitely allowed, that to be strong you will often get knocked back with difficult times, but with each time being able to reappear stronger and more knowledgeable than before.

If I didn’t have CF in my life I wouldn’t have the appreciation for time like I do now. Time is incredibly precious, CF or not, no one ever knows how long they have, so I have learned to make the most of what time we do have, doing all the things we want to do, enjoying every moment whilst making lifelong memories.

Without CF I would never know the kindness and humility I have seen from the wonderful CF community I have become part of, the people who drop everything for those in the same situation, each parent going through their own individual heartache but always there no matter what, with words of kindness and wisdom.

I have seen kindness and thoughtfulness from parents have lost their own children and even in their own immense grief, it doesn’t stop them from carrying out acts of kindness for others. I will never stop being amazed at the kindness and generosity of this wonderfully selfless community.

So whilst I hate CF and have moments where everything feels so miserable and heavy, I have to look at all the positives it has bought to my life, I have a beautiful little boy who is fighting hard and probably wouldn’t be the boy he is without CF and I can honestly say that without CF in my life I wouldn’t be the person you see today.

Another bed, another hospital.

After weeks of waiting for a bed at Stoke Hospital for Chester to trial the new Nippy Clearway machine that should help him clear his airways we have finally got a bed, it’s been a frustrating wait, but I fully appreciate the need for beds for poorly babies. To be honest this has to have been the most stressful admission we have ever had and being in a different hospital than normal I find myself feeling a little “homesick” for our usual hospital, if that is even possible. We were lucky enough to have been booked in by a nurse we met before on another admission here but I still feel a little lost not being on our normal ward with familiar faces.

We were initially told his morning that there was no bed available, however, I won’t lie, that was a godsend because at the time I had literally just abandoned my car at my mother in laws after spending 40 minutes rocking back and forward in an attempt to get my car moving in the foot and a half of snow. That adamant was I that I wanted to make it to work, I found myself stuck literally seething that I faced abandoning my car on the middle of a roundabout.

After making my way home, with my children, with no car, I set about making a plan for the next day which included getting my car, getting kids to nursery and school and then getting to work. The phone rang and I recognised the hospital number, it was a call to say a bed had opened up and I was asked to bring Chester in this evening ready to start the Nippy trial first thing tomorrow.

Knowing we weren’t just going to be 5 minutes down the road like normal I literally packed for every eventuality which meant loading my car with way to many bags. I then realised that because of the snow I hadn’t been to get his antibiotics and I didn’t have enough to last. This meant once I had got my car dug out (with the help of friends), had dropped Oakley off with his Nanny I then had to take a trip to the pharmacy, which is on a hill, with a car park at the bottom, so like an a*^#hole driver I abandoned my car right outside the pharmacy, there was no way I was chancing the car park even with the shovel in my boot.

The drive to hospital was uneventful with cars abandoned all along to route, knowing what hospital food is like I made the decision to take Chester for a cheeky McDonalds on the way in, a decision which proved to be a great CF parenting win after they decided to weigh him on admission! All those fish fingers, nuggets and chips added a few grams, win win for me!

We came to the ward with all our bags and the nurses giggled at my pillows strapped on the outside of my bag, I know too well how awful the plastic pillows are and didn’t fancy waking up to my sweaty face stuck to one so opted as I always do for my own. Nothing wrong with some home comforts (I may have also bought my own mug so I don’t have to share, maybe I am just a snob).

Chester always settles in so quickly, helping me unpack his teddy’s and pyjamas before running himself a bath and proceeding to get in fully clothed, really helpful! He’s never phased and trotted off down the corridor with his nurse to be weighed, not even bothered I wasn’t with him. I know this is a good thing, as it means he won’t ever be worried being in hospital, which given his track record is a likely reoccurring event, but it always makes me so sad that it’s something he’s had to get used to. Some children will go their whole childhood never setting foot in a hospital and it’s no wonder it can be terrifying.

The new shiny all singing and dancing, expensive machine was already waiting in our room and Chester being Chester was straight in the box having a good look, I’m trying to remain hopeful that he will behave and accept this new treatment and not throw one of his terrible twos tantrums, but if I am honest with myself I know what’s coming!

I’m now here in he dark, writing my blog with the blinds that may as well be sheets of toilet paper blowing in the draft from the window, sat on my parents bed, which I have to add is definitely an upgrade from the paper and pencils I’ve become used to, listening to Chester snoring from his hospital bed. He literally doesn’t care where he is, he can sleep anywhere, except nursery because there are way too many toys to sleep! But once he gets that bottle of warm milk his eyes start to roll in his head and before long, he’s gone (yes health visitors out there, he does still have his bedtime milk in a bottle! Shoot me now!).

I can’t help but feel a little homesick still, we’ve become so used to being around the same faces, the same routines and rules that I find myself feeling a little bit lonely. Don’t get me wrong the staff are lovely and very helpful and it’s actually great to be left alone, I guess it’s just different to what we are used to.

I often think about the amount of time we have spent admitted to hospital, just under half of his life already has been spent in one hospital or another, then I wonder what the future will bring, will all these interventions and treatments pay off, or will I just have to accept this is just the path Chester has been destined to walk?