"...engaging in the full range of experience - living and dying, love and loss - is what we get to do. Being human doesn't happen despite suffering. It happens within it. When we approach suffering together, when we choose not to hide from it, our lives don't diminish, they expand."


I want this blog to be positive but when you have a daughter who has a life shortening condition it's natural that you think about life & death.

As medicine advances & our understanding  of CF develops,  life expectancy for people with CF increases, as evidenced by this tweet.

But being me (and being human!) I still sometimes fear the worst.  This lead me to reading a wonderful, insightful and emotional book (I cried more than once when reading it) - When Breath Becomes Air by Paul Kalanithi. Paul was an American neurosurgeon, who, whilst facing his own mortality, wrote this  remarkable book.

This leads me to the quote which appears at the top of this blog post.  A quote from Paul's wife, Lucy.  It is  taken from a Ted talk which Lucy delivered in 2016 and it is a message for her daughter. 




 I took lots from Lucy's talk and it also  reinforced to me  that  we have to make the most of every day, of every moment and to enjoy our family and create happy memories (whilst kicking CF's butt with antibiotics, physio, vitamins, magical creon, nebulisers and so on!) .



 

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