When we started this blog one of the things we said we would be is honest, each time you write a blog post write it like no one is going to see it. Ive had part of this blog written for a week or so now, but it has took me a while longer to put out there than our previous posts, I hadn’t got round to finishing it.. But then the other day I was thinking about a few of the things people had said to us in the weeks following Stanley’s diagnosis, things that in all honesty (seems as we’re being honest!) dare I say it made me feel quite annoyed.. “I feel sorry for you”.. “some people get thrown more bad things in life than others” “what bad luck having one child born poorly.. but then to have a second aswell” and I then felt the need to finish this post and upload it.
Dont get me wrong when I had spoken to these people and those sentences came out of there mouths I don’t think there were any bad intentions what so ever. I don’t even think they knew what they had said, I genuinely think some people must think it’s the right thing to say to someone in our position or maybe even they don’t know what to say, because what is the right thing to say?
As a parent would you choose for your children to have anything atal wrong with them? – the answer is no of course you wouldn’t. But would I change my boys now? Never.
As a mum when you look at your babies there is no other feeling like it. I look at both of my boys and I could literally burst. – how is it even possible to love two people this much?! there is not a single thing I would change about either of them they are honestly, utterly perfect. We had Alfie on his own for five and a half years and I used to worry when I was pregnant how could I ever love anyone else as much as I love him? but sure enough the moment I laid eyes on our second beautiful boy I couldn’t ever of imagined not having him before that. Which is what made Stanley’s diagnosis hard – how could I ever imagine not having him?
I do truly believe that everything In this world is meant to be and that all things happen for a reason. But sometimes you do have to question what that reason is… why my baby? It’s not something I would ever wish on anyone else but it is true you always think it will happen to someone else, another family.
People have asked us how we have felt about the thought of the possibility of loosing one of our children before us and the only thing I can say (speaking for myself) is it makes you doubt all of your abilities as a mum, after all mums are meant to protect there babies and how can I protect mine from something I can do absolutely nothing to stop? the feeling of being powerless as a parent is the worst feeling there is, you instinctively look after your children after all you know them better than anyone else in this world.. but our little boys life is in mine and Jacks hands. The things we do each day to keep him well will quite literally help to determine his future. But in all honesty do we sit there and think about that each day? Well no we don’t.
I know some people think it must be on our minds all the time, how can it not be? but its genuinely not.. don’t get me wrong of course we have spoken about all possibilities and yes things do cross your mind most days..we have our daily reminder of treatments. But we just cant sit there and spend every day being upset about what COULD happen in the future, after all none of us ever know what is around the corner and why should that be any different for us? For now there is no cure for Stanley and all we can do is hope that one will be found in the near future or something that is as good as. Technology is changing all of the time and the research going into CF now is amazing. But for now whilst there isn’t that miracle cure, I know we will both do all we can in order for something to be found starting with fundraising.
We started this blog to show people what its really like to have a child with CF, it’s something that when we had Stanley’s diagnosis there didn’t prove to be a lot of when we looked it up online, there isn’t much to read for family’s who have just been diagnosed from a parents point of view.. But more Importantly we started this blog to show people that Stanley or Alfie for that matter are not defined by a diagnosis.
Our little boys are both SO special in there own rights and why should anything take away from anyone else seeing that? the one thing I know that both of us as parents don’t want is for people to look at us as a family and feel sorry for us or pity us, we are a normal family we do normal day to day things, we enjoy family days out and cosy nights in – and most importantly we are happy. And for me when I see both our boys futures I don’t see doom and gloom or what MIGHT happen. I see stanley’s first night sleeping through (can we hurry up with that one please?!) his first steps, his first day at school, his first sports day just like his big brother who makes us so proud at all of the things he has already achieved (even if he does answer back sometimes!) – things that have and will happen just as I had imagined they would, even before I ever had children – just as a normal mum would to two normal little boys… the only thing I got wrong was the two normal little boys part.. my boys, well they are anything but normal. In fact I think that they might just be the two most special precious little boys there are.?!
So please don’t feel sorry for us as a family or for me as a mum.. For whatever might happen in the future, I have known the meaning of true unconditional love by loving our babies and how lucky does that make me? Every day when I look at both of our boys and think I couldn’t love them any more.. I do. I positively love them both with every bone in my body – I have no need to sit there and count what other people might class as my misfortunes when my two little blessings far outweigh them, so no matter what the reason is, they were both meant for us and I for one cannot wait to see what the future holds for them both, our two precious little souls 💙