Month: August 2017

In the early days after Chesters diagnosis I would often wonder to myself if life would ever feel normal again. I would often think about how easy it had been with just three of us, not that I in anyway wish that we hadn’t had Chester. I knew having a second baby would be hard work but I had never imagined just how hard.

I would look at other people I knew around me having their second and third babies and would think to myself, how much easier it would be if CF wasn’t a factor and I remember thinking that I couldn’t cope, thinking I wouldn’t be able to do it and that it was all too much.

Fast forward two and a bit years to my life now and I can honestly say that for the first time since Chester was born life feels normal, whatever normal is? I don’t feel sad and miserable all the time, I don’t look at Chester and just want to cry (not all the time anyway) and I don’t have that feeling that something awful is going to happen hanging over me all the time.

I look at what we have achieved, how far he has come and how happy he is, oblivious of the fight he is taking on, I look at all the wonderful memories we are helping to build and life really feels good.

Don’t get me wrong we have to be super organised and plan ahead, and still be careful with things we do but CF has become routine and normal to us, I don’t find it all so daunting, well not all the time.

He is a child who will get into mischief, he will drink rain water from the plastic cup that’s been covered in mud in the garden for weeks and he will pick food up off the floor and eat it, this is all part of growing up, I’ve learned to take a breath not stress about it and carry on (until cough swab time and then I hold my breath waiting for the results).

Doing his treatments has become normal for him as well and giving his meds is like second nature, we don’t even think about how much he has to have we just know.

I see newly diagnosed parents and I honestly feel their pain, it’s an awful place to be, and when I think back to those days and how it made me feel it does still make me incredibly sad and I still feel sick about it, and if there is one thing I could say to them is that it will get easier and life can and will be normal again, it just takes time.

I guess I’ve come to realise that this is what will be normal for us and everyone’s normal will be different because everyone’s expectations of how things should be will be different. No ones path is the same and everyone will have their own difficulties to overcome, for us that difficulty is CF.

Now don’t get me wrong there are times when CF still kicks me in the gut to remind me of it’s presence but more often than not I just deal with what’s thrown at me and carry on without a second thought, because if I stay and dwell on it I am letting CF win.

Our recent holiday was the first time in a very long time where I have hardly thought about CF and haven’t been stressed out by it, we carried on as normal doing all the same things as everyone else, swimming in the lakes and pools, playing in the children’s play areas and I am happy to say CF didn’t get a second thought.

We had an amazing time despite breaking down on our way home and the memories we made were priceless and to anyone looking in we were a perfectly normal family, nobody was any the wiser and we didn’t have to talk about CF to anyone, there was no need and it was brilliant.

It’s taken time but we are headed in the right direction enjoying life and not letting CF win, there will be bumps in the road and at times there will be setbacks but for now Life has become normal.

 

 

It’s been quite a while since the discussion of Chester having a port was first raised and this week we had our first appointment with the surgeon who will be fitting his port.

Sat in the hospital waiting room we were scanning the room like meerkats who are on the lookout for enemy in their territory for any likely CF patients, we even went so far as to ask the nurse on the nurses station if there were any known CF patients there, which of course she said she didn’t know.

The unease of not knowing if there was anyone with CF and knowing that the surgeon we were due to see fits the majority of ports including those for CF patients in this area resulted in us asking an array of parents if they had CF children with them. Luckily all answered no so we were left with that warm fuzzy feeling that Chester and others were safe. 

We were called through to see the consultant and almost as soon as we walked into the room the flick was switched and both kids turned from little angels to…..well, I don’t think it would be appropriate to use the word I actually want to use but let’s just say they weren’t on their best behaviour. 
Chester immediately climbed up onto the consultants looking like butter wouldn’t melt, but those looks didn’t fool me and I knew straight away that he was just trying to get closer to the keyboard and phone as he does in CF clinic.
The surgeon showed us the port and explained in detail how the surgery would work and how it would be fitted. We knew he would be having a bronchoscopy as well so he explained this would happen first, then the port fitting. It has also been decided that he would remain admitted for two weeks of IVs which I won’t lie I am dreading, but they will move him from the hospital back to our local one once he’s good to travel. 

The port looked significantly smaller than one I had already been shown and I was a little happier that despite him having a slight upper body it wouldn’t protrude as much as I first thought.
After running through an extensive list of potential complications, approximately 35, I was finally asked firstly if we still wanted him to have the surgery and secondly how did I feel about it myself. 
I won’t lie, it’s taken time for me to come round to the idea of Chester having this port, and my reasons for not wanting it are purely selfish. I have also thought long and hard about how I have to be so careful about the way I cope and deal with these things, my two boys are always watching me and I need to show them both that it’s no big deal, that it may be different but it’s superhero different and that he should not be ashamed or embarrassed about it.  

But it’s now booked, next month he will be having his port and he will have another scar to his already growing collection. In all honesty he already has so many scars, what’s one more? I have often seen people staring at him when I take him swimming, and I have learned not to care and I learned to look at it that those scars are marks of huge hurdles he has overcome and they are something I am proud of him for and one day I hope he will be proud of them too. Until then he is one step closer to being ironman and that makes him even more of a superhero in my eyes. 

The summer holidays are well and truly here, families everywhere are packing up and taking their children on holiday. Whether jetting off abroad or setting off on a staycation camping trip, planning, prepping and organising is underway and people everywhere are getting ready to go and make memories with their babies and enjoy some quality down time away from work.

We are just under a week away from our annual European road trip and with work and hospital appointments this week, I am already panicking that there is not enough time to get everything ready.

Packing to travel with kids is a nightmare and stressful at the best of times, making sure you have packed the right clothes not to mention enough of them and making sure you have things for them to do on the journey are just some of the things parents have to think about.

Packing for a child with Cystic Fibrosis only adds to that stress, so many additional things to think about can make it hard work. I find I am wired until the minute we actually lock the house up and set off on the road.

Admittedly things have gotten slightly easier now that Chester is on a break from two of his nebulised antibiotics and the fact he is mainly on tablets and capsules instead of the liquid medications.
From our first trip abroad!

I must admit I am incredibly impressed that someone so small can swallow tablets like he does without a care, sometimes swallowing as many as 9 tablets in one sitting. Tablets makes the worry of having to use ice packs, cool bags and fridges somewhat easier.

Trying to work out how much medication to take is always one of the stresses, I like to take enough that if a bottle is lost or in the case of the liquid ones, knocked over, we don’t have to stress ourselves out with an expensive and difficult trip to the local doctors for more meds.

Then there is the question about which back up antibiotics to take ‘just in case’. CF likes to be unpredictable and I like to be prepared so we have our back ups on hand most the time.

With all this in mind we have to plan ahead so we can get the repeat prescription in time because you can bet your bottom dollar the time you need it ready on time, there will be an item out of stock and left owing which can mean traipsing around town trying to find a pharmacy with the item in stock.

We then need to think about his equipment, making sure we have the nebuliser and spare parts, plus his Physio items like pep mask and blowing activities to keep his lungs active while we are away. CF doesn’t take a holiday so no matter where we are in the world his treatment doesn’t stop or change, we just have to adapt timings to make it fit with our holiday plans.

We have been known to do his percussion on the Chunnel in our car, sat on a sun lounger next to a pool and whilst chilling under a sun brolly on the beach in the south of France. It has to be done no matter what and we have become used to the odd looks we get whilst “beating” our child.

With Chester we have to remember extra changes of clothes because of excessive sweating and leaky nappies, extra salted snacks due to salt loss and in extreme temperatures we have had to make sure we have a prescription for sodium supplements just in case he refuses salted foods or snacks.

We have to make sure we have the right insurance which covers every thing we need, replacement meds, medical expenses and medevac to the UK if required and we always carry his Med docs including latest clinic report and contact details for our team back in the UK just in case.  As you would expect of a military mum this is all filed in order in his designated CF folder.

Our holiday has already been planned and prepped around what Chester can and can’t do safely, we have evaluated risks and have looked at activities that are safe for him. We have already carried out an online recce of local doctors, hospitals and respiratory units and have even checked the local respiratory doctors online CV out. Some may say this is over the top but in my line of work I have to be organised and this organisation is mirrored at home.

Once Friday comes and the front door gets locked I will breath a sigh of relief that we managed to get on the road and will be hoping that all the important stuff has been packed and that I haven’t forgotten anything.

Then when we arrive and I’m sat sipping my large glass of chilled wine I will able to relax and start enjoying my holiday.