Month: January 2018

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.

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”

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.