A letter to my child with Cystic Fibrosis

Emma Hughes

I’ve slept upright in a hospital chair next to your cot listening to your shallow breaths and I’ve held you in arms my not knowing if you’ll make it.

I’ve held you down for Doctors and Surgeons and cradled you while your heart and mine were breaking.

I’ve sat up all night with you when you couldn’t sleep through coughing and then I’ve fought to wake you up when it’s time for treatments.

I’ve held your tiny hand for hours on end when I’ve been unable to hold you and I’ve cried more tears and felt more sadness and guilt than I ever thought possible.

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This isn’t how it is supposed to be and this is not the life I chose for you.

You are strong and brave and you are above all else a fighter.

No matter what life throws at you, you take it in your stride and you still manage to smile even during the toughest of times.

I want you to be free to live your life unlimited and I want you to do what makes you happy and take risks.

I will forever be in awe of you. Your strength and determination have made me a stronger person.

Never give up that fight or loose that drive and remember I am always here fighting right beside you. Your fight is mine.

You really are a true hero, and best of all you are mine and I know that whatever comes your way you will be just fine.

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Published by Emma Hughes

Mamma of two beautiful boys, one a Cystic Fibrosis fighter. Love all things travel, making memories and am living in hope of a cure 🌹

9 thoughts on “A letter to my child with Cystic Fibrosis”

  1. This one really choked me up a bit. You guys are all stronger and braver than most could ever be and I am in awe of you and the way you fight this head on. Well done mrs xx

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  2. Such sad times. He is a little fighter and always had a smile on his face. If I could take his condition away I would. Xx

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    2. Chester is a little treasure. You guys were dealt this awful blow but look how amazing you both are in dealing with it. With your help he can beat this and kick CF’s butt into touch. You both have many amazing friends who support you … And Chester is not going to give in to it. Go peeps xx

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  3. Well that brought a tear to my eye, but then you always do Mrs H! You all are strong and are amazing in everything you do. Chester is a fighter and we will kick CF butt!. #amazing

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  4. There will be good days and bad days, and days when both the boys will make you both very proud. keep fighting all of you, we all stand with you, beside you all the way. We will show CF that it picked on the worng ones this time. Love you all, I am so proud, Mum xxx

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