B positive

Winter is Coming and as avid Game of Thrones fans, we couldn't help but make comparisons between GoT and our lives as parents of a CF youngster. Humour us for a while here, as we think there are some parallels between the two. With CF the status quo is constantly changing. A cough swab result could mean a new treatment, or a cold another antibiotic. In Westeros power dynamics change rapidly, we can totally relate to that! The Night's Watch - the guardians stationed as the first and last line of defence from the dangers beyond the wall - represent our talented, committed and knowledgeable CF Team at RMCH. Watching over us and planning our battle with precision, care and dedication. The lingering fear of winter is comparable to the constant worry that CF brings - always lurking in wet coughs, colds, stagnant water, mud & other places. In the White Walkers we see CF itself. Trying to rule, take over & destroy life. Please refer to The Night's Watch - we are fighting...

"... 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  remarka...