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I observe people around me, wondering about their lives, their worries and their dreams.  What do people see when they look at me?  Do I look like the mum of a baby who has a chronic illness? Do I look like someone who spent yesterday afternoon forcing a nebuliser  onto the face of my 14 month old daughter?


 I have often thought of writing a diary or a blog to order and process my thoughts and feelings.  Why a blog? I don't relish the thought  of all my hopes, worries and dreams being put out in the world for people to judge, worry about, direct sympathy to.

Maybe it's because when we received E's CF diagnosis I turned to google but avoided upsetting articles about lung function and average age of death (28 years young if you are wondering).  Instead I read other parents blogs about how they adjusted, coped and enjoyed a fun family life. How they regretted letting the diagnosis impact on the magic of their baby, about how they learnt that quality of life is more important than living in a sterile bubble.

These people, whose names I can't recall, helped me to be positive and to enjoy the many beautiful moments my husband, daughter and I have shared.

If our words help even just one other family, if they help our fabulous friends & family keep up to- date with our story, if they help to raise money for the CF Trust and/or RMCH and if it helps us to cope, organise and enjoy then exposing myself will be worth it.
The B positive blogging team!

Comments

  1. Barb23 June 2017 at 00:25

    Sadie, this is such a fantastic and brave thing for you to do and no doubt over the years ahead it will help other parents of children with CF. I am in awe of everything that you are achieving. Keep going bloggers! xxx

    ReplyDelete

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