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!)
in terms of health stanley has done so well, he’s been gaining weight, he’s tolerating his feeds alot better and were now back to cows milk protein,he’s also started trying food!
a few doses of treatment oral antibiotics is all he’s needed, and we reached a big milestone of no planned iv antibiotics for a whole year! This is huge for Stanley, he has such a rough first 18 months.. one problem arising after the other, he never got a break – none of us did. but it goes to show hard work pays off if you keep going with things there’s light at the end of the tunnel, and even though we know with CF things are very unpredictable and can change at any time it’s good to appreciate when things are well, the times where we get to be “normal” no hospital admissions, no time spent apart as a family, just time for us, because it really is the small things that mean the most.
Alfie’s in year 3 at school now and Stanley is due to start school this year – I’m not ready for it, but I know he will love it, it will be a big step for us and take a lot of planning, I love having him with me all day, to watch his character grow and to see him learning new things, he is so funny, so kind and the most loving little person, it actually hurts my heart the thought of how much I will miss him but I know its something that will be good for him and for him to start to be around others.
Last year was actually one of the best in terms of health, time spent in hospital, appointments ( there’s always a lot but a few less is a step in the right direction!)
Yet it was one of the hardest..
This year will be 3 years that we’ve had CF in our life’s.. and when the feeling after diagnosis is described as grief it is so true, And just as with grief everyone deals with it differently, there is no right or wrong, no timescale.
For me personally the first 18 months were autopilot, of course we had times where we got upset, days that were harder, but we focused everything into the boys, making sure we still did things with Alfie, hospital admissions, phone calls, emails, appointments, clinics, all whilst trying to keep some sort of routine, we held charity events, jack did the bike ride, we got engaged! It was all go go go, and pretty non stop and I wouldn’t change it, I think it’s what we needed at the time, something to focus on and keep us busy.
But since then things have slowed down , the boys get older and routine changes, Stanley’s been well we of course still have appointments and treatments each day, we still do charity events, social media etc but it’s when things slow down you have more time to think, not just about CF but how it affects everything, your relationships with people, your outlook on things, your worries – it changes everything.
And that’s the hardest.
I think the biggest change is the way we now see things which I definitely think has been a positive but it’s not without its negatives also.
Our relationships have changed with those around us, relationships of course change all the time, that’s part of life but we have seen more than ever who is and isn’t there for us, those who truly care and those who are there constantly, there’s people I thought my relationships with would never have changed that now have, but having a different outlook shows you a lot..
It shows you how selfish some people can be, how so many don’t think of how saying or doing things can affect people, I found myself angry at people for a while, how can people do certain things and think it’s ok, for people not taking the time to ask or learn things about Stanleys condition and how things they could do can affect him, after all stanley can’t protect him self at his age, people complaining about petty things and not appreciating what they have.. having to stay away from get togethers and days out – both us and the boys missing out.
having to see everyone else having a good time and having to stay in yourself isn’t always fun we of course enjoy spending time on our own as a family but it’s hard to not feel hurt sometimes, because we are only human.
But sometimes it takes having to take a step back and having to remember that we were probably ones who would complain about those petty things before and maybe not always think about people in different situations, and for that CF is a blessing ( it’s not very often you can say that!) because it makes you appreciate things so much more, what’s important and what’s not, what’s worth worrying or arguing about and what’s not, it has taught me to now say no more, saying no to people that don’t make you happy, staying away from situations that don’t make you feel good, and to not worry so much about what others might think because there is nothing more important than being happy.
and although it’s always good to worry about others it’s so important to not let that take over, to stop worrying so much about people who don’t do the same for you, a lot of the time people notice your change of attitude towards them but don’t realise there behaviour that’s made you like that and I no longer feel the need to try and explain – If people don’t understand they never will, I no longer feel bad for putting ourselves first more, because it’s us that are responsible for our own happiness and life is far to short.
The most important change for me was to start doing more, CF came along and it made me want so much more, I want to give the boys memories, do things none of us have done before, I want to start taking them to see places whilst everything is still magical to them, I never want to look back and wish we had done more.
obviously these things cost money but you can make more money – you can’t go back and make more memories, and so this is it, this is our year to do more!
A journey with CF takes you through more emotions than I think I even knew it was possible to have, sadness, helplessness, anger, anxiety, grief, but more than that it’s the happiness in enjoying the little things, the pride at fighting back, the sense of community and the strength it brings out in people it shows that no matter how much you don’t want to do it all over again some days, you get up and do it, it shows you how to use your time wisely – to make the most of things and to appreciate the now.
There is so much to look forward to this year and I now feel so positive about everything that is to come and something Stanley’s nurse said recently confirms this, she said
“at the end of the grieving process comes acceptance, and I think you are there”
And do you know what? I think I am too.
This is our life now, it may not be perfect, but we are a strong family, we have been tested more than most and we have come out stronger.
I will never be ok with my baby having CF, I will never be ok with what it takes from us, but being positive in a negative situation isn’t being naive – it’s leadership.
I saw a quote a few weeks ago.
“ worrying about things doesn’t stop things from happening – it means if it happens you’ve suffered twice. ”
And I don’t want to have to suffer twice.. CF makes you feel like everything around you is out of control, and to some extent it is, but what I can control I will.. CF takes away enough it’s not taking our happiness away to.
So here’s to a happy and healthy 2019 💛
Photo credit: Carly brown photography.