Nothing will have prepared you for the words you have just heard and right now you will be feeling pain like you have never felt before. You will be asking yourself over and over, why me, why us and why him. It’s easy for me to say now, but don’t beat yourself up with those questions, they are impossible to answer. You will blame yourself, believing you must have done something wrong but the short of it is, this is not your fault.
There is a lot to take in, you will be bombarded with information from all sorts of different people and there will be a lot to learn, but you don’t need to do it all in one day, baby steps are fine! Right now you need to just breathe, and there’s nothing wrong if that is the only thing you do right now.
You will want to know everything, but right now Google is not your friend, stay away from it, it’s full of outdated scary information and you don’t need to see it.
I want to tell you that everything will be ok, but there will be days when it won’t be, days when you want to shut yourself away from the world and cry. There will be dark moments when you feel anger and are stricken with grief, when it feels like you can’t see an end to feeling this way, remember all these feelings are perfectly normal and they will pass.
You will have moments where you feel like you can’t do this, but know that you can, you may feel weak but you are stronger than think. You will get knocked down but you are strong enough to get back up dust yourself off and carry on.
You will feel resentment, anger and envy amongst a whole array of feelings and you will want to scream and cry. Just don’t be afraid to reach out if it gets too much. Asking for help is not weak, it doesn’t mean you’re a crap parent it means you just need a little help, you are not a machine and being broken does not help your baby who needs you. There are people you can talk to, do not suffer in silence.
Over the coming weeks and months CF will start to slot in, it will seem like that’s forever away, but it will almost become part of your routine and there will come a time when CF isn’t the first thing you think about when you wake up and look at your beautiful baby. The sad thoughts will get less and less, and you will manage those feelings so much better but in all honesty there will probably never be a day when CF doesn’t enter your thoughts at least once.
You won’t ever stop worrying, but remember this comes with becoming a parent to any child whether they have CF or not. There will be things that make you sad but there will also be happy times filled with laughter and these will far outweigh the bad.
This diagnosis will teach you that life is precious and it is to be enjoyed, we never know how long we have our children for, CF or not, so it is important to always try to put CF to the back of your mind so you can relax, enjoy yourself and make memories. Some of your most precious memories will be lost or tainted because of the CF cloud, just make sure you do your best to remember the good times.
There will be set backs, CF is unpredictable and throws a curve ball now and again to remind us it’s still there. Despite this, you will come through those each set back stronger and wiser than before.
You have joined an amazing family and although you may feel alone in this now, know that you will make some truly amazing friends that understand you because they share the same journey with their own children. You will probably never meet most of them but you will form incredible friendships and those friends will be there with you every step of the way like a new family.
You are raising a warrior, your drive to fight and survive will wash off on him. He is resilient and so much stronger than you will give him credit for. He will go through the unimaginable and he will come out the other side, he will make you proud as you watch him grow and become more and more independent.
There is no getting round the fact that CF is crap but the future for these warriors is bright, medicine and treatments are advancing everyday and things are looking better. Stay positive, be happy, love and kiss him everyday.
You have a beautiful baby go enjoy him.
6 thoughts on “A letter to myself as a newly diagnosed cystic fibrosis mum.”
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Such a beautiful way with words xxx just perfect xx
Thank you xx 😘
Beautifully written – jeez oh!
Thanks Louise x