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 ❤️
