Most of the blogs that I do are planned in a way – I jot down emotions and thoughts as I go along and then bring them all together and share these with you. This particular blog is pretty much unplanned and that’s because Sophie showed me a blog recently which got me thinking. The blog Sophie showed me made me think that Stan will see this one day, he will see the blogs we have written from our emotions laid out to trying to raise awareness of Cystic Fibrosis. I also thought the reason this blog is here, the reason we have started fund raising is because of Stanley and to show you, our followers, a life with Cystic Fibrosis. We have never spoken to Stan directly through one of our blogs, to tell him how we feel or why we have done certain things. I think the time is right for me to do that, to speak to Stan at a time we are just about to embark on a new year and a time where we reflect.
This is the first blog in which I don’t know where to start; right now, you’re just shy of 18 months, we’ve both grown and changed in that time, as a family we’ve changed so much. Recently I’ve seen you grow from a baby into a boy (although You’ll always be your Mummy’s baby boy no matter how old you are!) You can walk now so much so you’ve had a suspected broken leg in the process just like Alfie with broken bones and bruises – those trips to the hospital make a change to the norm, which you’ve grown used to. For a change, they look at you as a boy just being a boy and not a boy with Cystic Fibrosis. Something your mum and I will always make sure people see you as, Stan the man, not Stan the man with Cystic Fibrosis.
You’ll go through a lot in the years to come Stan, how you react to these things will define you as a person. One thing I notice about you already on our visits to the hospital and when you meet people is that you aren’t shy, you’re confident. Something as your Dad I will always nurture, as being confident is a trait that will serve you well in the future – you can take on the world.
Right now, you’re innocent, you’re a typical boy – you see no danger and feel no fear. As you grow you’ll naturally start to understand what’s going on, you’ll start to understand the cards we’ve been dealt but ultimately what you have been dealt. You might at some point think ‘why me?’ and in all honestly son, you’ll be searching forever for the answer, you will probably never find the answer. When that day comes we’ll talk it over – brush you down and carry on.
Your mum and I have to make decisions we think are best for you, best for you right now and in the future – you’ve been through a few operations already and those decisions we take very personally as your parents. Some decisions break my heart, some decisions have placed scars on you but all of them were and will be to make sure your safe. As you grow these decisions will be yours to decide but you’ll never be alone. You’ll always have my support whatever the decisions are that you make but for now I will protect you, making sure they’re calculated and right for you.
One thing I will take personally for the rest of my time is your diagnosis. Words seem to fail me when it comes to explain how we got here but we’re here, in this together. It won’t and can’t defeat you – you’re far greater and more powerful than the tag of Cystic Fibrosis that has been placed upon you. One thing I have to say to you, a thing I may never be able to say to you to your face is that I’m sorry son, sorry that somehow, I passed this on to you, I had no control over it and that hurts but like I say we’re here and I wouldn’t change you, because you’re my son and I am your Dad, your friend – forever, whatever happens nothing will ever change that.
I don’t know how you will feel about all this when you’re older, at times you may not even know how you feel – it’s a learning curve to understand and accept our feelings. At times you’ll feel frustrated, at times you may not know what to do, what’s right or wrong. Never be afraid to express your feelings. Our home, your home will be your comfort zone and it will always be that – a place that you’re safe and when we step outside I will protect you as much as I can.
You’ll certainly get lost along the way – we all do, that’s just life but I’m here, I’ll help you find your feet, find who you are. I’ll help you more importantly be who you want to be – aim for the stars no one can stop you. Your future is in your hands, the same hands you were born with – they’ll never change – they’ll just grow wiser, stronger and bare your story.
Your mum and I over the years will make sure the foundations are there for both you and your brother, Alfie. Something that is important to your mum is that she has your last name – you’ll find that some people think ultimately, it’s just a piece of paper with your name on it but to us its more than that its commitment to our boys, you, that we’re a team. Your mum is an incredible woman, she’s already your best friend and when you come to read this I’m sure you’ll agree.
This blog is simple, it’s for you, my boy – never forget;
You will always have my time but more importantly you will have my patience.
You will always have my love but more importantly you will have my attention.
You will always have my guidance but more importantly you will have my support – and my support you need never ask for.
You’ll find this blog when you’re ready, at the right time; everything happens for a reason and things tend to happen at the right time without us realising…
Love you always, Dad x