Month: October 2018

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.

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 😘

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.