well who gets pregnant just before a worldwide pandemic?! .. that would be me!

it honestly makes me laugh now thinking about it, because since when do we ever do things by halves?! But this is something we could never have predicated, it’s been one of those things that even though it’s hard, it’s out of our hands just like every other women pregnant during this time going to scans etc on your own isn’t great but fingers crossed things settle down soon! Although I can’t see it being in time for this little ones arrival now.

This pregnancy has been different in many ways, it’s almost the exact same time four years ago that I was this pregnant with Stanley and back then we didn’t know any of what was lying ahead, little did we know that in a few short weeks we would get a diagnosis that would change our lives forever.

I find myself every now and again thinking back to those early days after diagnosis and I wish I could have told myself it would be ok, the thoughts of how would life ever be normal again, how would we go outside and not panic about everyone and everything, what Stanley could do and couldn’t, about both him and Alfie missing out of things and the impact that all of that would have.

If only we knew that in fact the best thing we could have ever given the boys was each other, it goes without saying they are the best things that have happened to us, and now living with cf? Well it simply is just our life.

don’t get my wrong of course it has its challenges, but you adapt to life doing things differently, this whole new life becomes part of your routine, I can genuinely say I don’t think of cf every day, of course with every decision you make it’s there in the back of your mind but I think it becomes second nature. I never look at Stanley and see him as a little boy with cf, he’s just our Stan, our baby boy .. he came along when we didn’t even know we needed him, I will forever be grateful for the joy he brings to our life’s, seeing Alfie and Stanley as brothers is my proudest achievement – nothing will ever top it.

and so came the decision of adding to our family.. such a personal decision for anyone without adding a genetic condition into the mix!

It’s something that we spoke about time and time again, whether we were right or wrong for wanting another child, was it a selfish decision?we had Stanley not knowing we were carriers of cystic fibrosis, now we do have that information would people think it was a selfish decision to make?.

everyone will have a opinion, but I think in the end it came down to not worrying about what others would think, others don’t look after our children – we just had to do what was right for us and our family.

for us we live with cf day in day out, we are armed with knowledge we didn’t even know existed this time four years ago, every day we weigh up risks, we change plans, we get up and we work hard to make sure treatments are done to keep Stanley as well as possible, we have spoken with nurses, physios, doctors, genetic councillors, every option – we have been through. as only parents of a child with cf will know, cf can take away so much..

for us we knew we would never regret having another baby and only regret the what if? if we didn’t.

and so here we are, baby number three and our first girl due very shortly! the boys were desperate for a little sister and after ten years it’s still strange to be buying pink! I’ve made them check at every scan! but we are all so excited for this little girl to complete our family.

we knew the risks ( 1 in 4 of baby having cf) and we had accepted that due to all tests being invasive we wouldn’t find out whether she has cystic fibrosis until after she is born, as it wouldn’t have changed our decision whether to continue with the pregnancy or not.

however at a 16 week consultant scan, a NIPT test was offered to us by doctors which involves a simple blood test, all non invasive with no risk to the baby and was over 99% accurate, it’s something we had heard about but we weren’t aware it would be available in our area. after a long week of several phone calls and meetings in person discussing with genetic councillors weighing up all of the pros and cons of finding out during pregnancy, it was agreed we would go ahead with the testing, and so I had blood tests done just before I was 18 weeks gone.

We had to wait just over 2 weeks for the results which we got back in March the day after my 20 week scan .. in all honestly I already knew what the councillor was going to say over the phone. I had told jack I knew even before we had the tests done.

.. mother’s instinct or just preparing for the worst outcome who knows?

Hearing that news for the second time is no easier, I cried just as I did with Stanley it’s a emotion that’s hard to explain, I don’t know if it’s relief someone confirming what you already deep down knew, or the fact that it’s confirmed – it’s real.

our little girl will have cystic fibrosis.

I’m not going to say it’s all fine, of course it was horrible news, but what I will say is that this time I don’t have them thoughts of how will we do this, or how will life be normal again? because this time we have experience on our sides that we didn’t have before, the practical side we already know what we are doing, we don’t have to take information on how to do medicines and physios and learn about viruses and germs as we did before – we know that she will fit in just fine.

sometimes in life it’s hard not to see things as a test and think why us? of course down days are normal we’re only human..

but instead I honestly now think how lucky are we? that in a few weeks time we will have 3 beautiful babies that some people never get the chance to have and yes it’s not without it’s challenges, it’s not always easy and we’ve never made it out to be, cf is hard, it’s relentless, there are no days off.. but it’s so worth it because cf never takes away being there mum, the way Stanley pulls faces that you just can’t help smiling at, the way that Alfie tries so hard not to show on his face when he’s absolutely chuffed with something, the way the boys say I love you to each other every day and are just happy in each other’s company.. they are truly best friends.

all of the memories we have just from them being in our life’s are things that can’t ever be replaced or taken away by cf.

Sometimes it’s so easy to see past the little things, but it’s those little things that make it all worth it.

and so as we’re about to start this journey again, and all the unknowns that come with it, one thing I do know is that I’m so excited to see the 3 of them together, our little girl doesn’t know how lucky she is yet to have two big brothers who love her so much already.

not long to go now and our family will be truly complete. ❤️

we’re now reaching the 3 year mark of having started this blog, having told the world of Stanley’s diagnosis and opening up about what cf involves and how it affects us. In fact it’s exactly 3 years ago today since we had Stanley’s diagnosis, this date for the first 2 years used to play on my mind, but not this year..

the past 3 years have been pretty full on to say the least, a new baby, charity bike rides. Charity nights, proposals, hospital stays, tv and radio interviews, working with company’s in the US, Stanley being the face of hospital leaflets and posters, clinic appointments, passing driving tests, weddings – to name a few! and now here we are Stanley about to start school!

I think this blog is more for any new parents of a child diagnosed with cf, it’s one I’ve wanted to do for a while but I wanted to be able to experience life with cf not just for a few weeks or months but to experience all of those early years, the highs and the lows, all of the firsts and all of the changes I wanted to be able to be honest about our experience and show that in those early days when you think nothing will ever be good again, it can be and it will be.

I thought the other day about when Stanley was first diagnosed, that feeling is something I will never forget, I just knew what the doctors were going to say that day, the minute I put the phone down from the phone call asking us to go into hospital I said to Jack Stanley has cystic fibrosis, he hadn’t been right since he was born and I couldn’t put my finger on what was wrong but after that phone call it clicked, that day we sat in a room waiting, me waiting for them to confirm what I already knew and jack waiting for them to tell him I was wrong, as I much as I wanted to be wrong I knew, call it Mother’s instinct.. but I knew.

Those days and weeks after we’re the worst of my life, I honestly think looking back now it was a blur and I don’t even know how we even took anything in, how we processed everything we were being told, learning all of this new information about things we had never even heard of before, names of treatments and medicines, bugs and germs to watch out for, things to avoid, your life changes when you have a new baby and then you get a diagnosis of cf and it changes again. I honestly remember thinking that day that things would never be the same again, my babies life had been robbed, his future gone, I grieved for a life I thought my little boy would have.

I so wish that during that time instead of being worried to search the internet to avoid all the horror stories I knew would await, I could have found a blog that showed that isn’t the case at all, yes cf is serious and it’s not something to be underestimated but I wish I could have seen the children I see now on cf parent pages that are all achieving so much just like other children there age. I wish I had someone to tell me that life does go on, and the majority of things you think you will never be able to do you can, even if you have to go a different way around things, life can be normal again..What even is normal anyway?

of course cystic fibrosis has a huge impact on your life I’d be lying if it said it didn’t, I’m torn at times when I look at Stanley, torn between feeling sad that he is so innocent and knows nothing of cf and how serious it is and wanting to keep him at this age forever so he never has to know, yet at the same time excited to watch him grow because now I really believe worrying changes nothing and if there is something he wanted to do why should cf stop him? I want for him to be able to do anything in life that he wants. Because he can he is the most strong willed, tough little boy, he falls over and gets back up again like nothings happened, needles and treatments? – don’t phase him, he walked into school for his first taster session and didn’t even look back. this little boy can take on the world – he already does.

the thing is in life things change all the time, we can’t always expect things to stay the same, situations get thrown at us that we weren’t always expecting, sometimes those things change your life in ways you never thought possible , but if someone asked me now whether I would change anything? – never. Because that would mean we wouldn’t have stan and that’s not even worth thinking about.

If you are a new parent and your reading this know that those bad days don’t last forever, one day you will realise that today you didn’t think about CF and that’s the best feeling, it will always be there at the back of your mind but one day it comes naturally you don’t have to think about treatments and how to do them, you don’t think when your giving medicines that this is because of cf, all those things become your new routine, something you do without thinking about, and once there done you get on with your day as you would normally and when you think there’s not enough hours in the day some days – you will find them.

Its still ok for us to have bad days every now and again and to feel a little down but those are now few and far between, Please don’t ever let cf take away those firsts, enjoy things for what they are, the simple things – the first steps, first words, first days at school enjoy them – there precious.

Learn to appreciate everything for what it is, don’t worry about what might be, when things are bad deal with it and when things are good make the most of it, if you want to do something book it, go and do it. make memories don’t ever look back and wish you did more, life is so short cf or not it’s to important to be wasted wondering why us?

After Stanley was diagnosed I read this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

………………

and Holland is pretty special, my Stanley is special – our lives our special because of having Stanley in them. Remember those dark days don’t last forever and for every reason you have to be sad some days there will be ten more to be thankful for, it does get better ❤️

8 months it’s been since we last did a blog.. where has that time gone?!

We as always keep everyone up to date with everything that’s been going on,on social media but admittedly the blog has been neglected, that’s something that will change this year and blog posts will now go up more regularly.

so in the last 8 months since we last blogged quite a lot has happened! Stanley turned 2, Alfie turned 8 and they are both still big characters as ever! there bond is still unbreakable, I honestly think that these two will be best friends forever, I love watching them together it’s so special, ( although they have started wrestling each other now I’m not so keen on watching that part! But boys will be boys!) Continue reading “acceptance.” →

As most of you that follow the blog know we have two boys – Alfie and Stanley.

Alfie now 7, came along when me and Jack were just seventeen, at the time it was easy for most people to judge to look at us both as just another teenage couple that wouldn’t last, “just another set of teenage parents”

Continue reading “My boy Alfie.” →

“All that matters is the baby is healthy”

I actually find this a weird saying since having the boys.. it’s not something I find myself saying to anyone now – Because my children weren’t born healthy.

In fact when people ask us about having more children it becomes quite awkward at times, reactions are one end of the scale to the other either lovely or people actually look at you like your almost mad, usually right after the same questions each time and the same answers.. Continue reading “all that matters is the baby is healthy..” →

we have used over 10,000 syringes in 18 Months to provide water, medicines and enzymes 💉

over 1100 nebulised treatments totalling around just over 13 days of stanleys life. 💊

in just 18 months we have had around 10 admissions to hospitals. 🏥

15 cf clinic appointments. 👶🏼 Continue reading “ORKAMBI NOW.” →

It’s Stanley’s first birthday coming up and I thought it would be a nice time to look back on the year we’ve had and coupled with the fact I think my last blog was a bit brief – I think you’d agree we’ve had a hectic year, hospital admissions, bike rides and proposals and that not even half of it! Normally Sophie proof reads my blogs but this time I’d like her to read this in the same vein you, the people who follow the blog, do.

Continue reading “Through Daddy’s Eyes: The First Year” →