The Upside Of Down
Saturday, October 30, 2010
"This" was The Upside of Down, a memoir past times Susan Biggar (Kindle edition here.)
On 1 level, too an effective 1 at that, this is the story of parents raising 2 children amongst cystic fibrosis, too all that entails (including a choice to convey the minute babe fifty-fifty afterwards genetic testing guaranteed that he would convey the disease.) Susan summarizes:
This is a story of belief, a story almost learning that sometimes joy is a decision. The Upside of Down is a memoir almost illness, yes, but it’s too almost the vantage too frustration of parenting, the difficult operate of resurrecting a union too the upheaval of cross-cultural life. This majority celebrates today because nosotros can’t ever count on tomorrow.
So read the majority for that argue alone. But at that spot is roughly other argue related to topics ofttimes discussed on this blog. Susan too her married adult man Daryl too the children had a jeopardy to experience the differences inwards medical tending inwards the US, New Zealand, France, too Australia. The daze of Paris, for example, is seen inwards this excerpt almost Oliver's infirmary stay:
The efficiency too hygiene at the infirmary are astonishing. Nurses are highly skilled too meticulous, though non at all chummy. The physios barely admit me even then perform really effective physiotherapy. Our doctor, the Professor, arrives only 1 time inwards the calendar week amongst a fifteen-strong flock of subordinates. He briefs them on the case, nods at me too is gone. Other white coats transcend through fleetingly, over again amongst picayune conversation.
The lack of tidings too interest inwards decisions leaves both Daryl too me questioning the care. We may convey relatively picayune medical noesis but to a greater extent than "Oliver knowledge" than anyone else. Is that non relevant? Isn't at that spot a purpose for us to play inwards helping him improve? I am physically nowadays amongst Oliver, but otherwise experience invisible. The purpose allocated to parents is minuscule amongst "someone else" deciding everything almost his treatments, meals, baths too fifty-fifty visitors. I am routinely disclose of the room for dressing changes too procedures, despite Oliver's wild protests. For the showtime fourth dimension since nosotros started on this journeying amongst illness I commence to experience similar a victim, a powerless instrumentalist caught upwards inwards a life that is moving inwards ways I can't control.
A sojourn inwards California offers a difference:
It's civilization daze all over over again at the hospital. The nurses are amazingly effervescent too friendly: I convey v novel best friends past times lunch. They wearable clip-on teddy bears on their stethoscopes too Bear inwards the large blueish house pins on their shirt collars. When my tears seep out they offering full-on hugs too tissues, fifty-fifty the occasional shoulder rub.
[When she calls inwards during a intermission from the hospital, Daryl notes:] "The menus are amazing too all the extra nutrient nosotros tin gild for him. Plus everyone is then much to a greater extent than helpful too friendly than inwards France. It makes a large departure to the whole experience."
But fifty-fifty warm too laid-back tin convey its downsides. The daily routine is unpredictable too harder to operate around. Medications too treatments are sometimes slowly too Oliver is less settled amongst the slightly topsy-turvy routine. Hygiene etiquette, though belike perfectly satisfactory, feels dodgy afterwards the French hysteria almost sanitisation. Oliver is non allowed out of the edifice at all, fifty-fifty for a quick walk inwards the stroller.
Finally, the solid unit of measurement settles inwards Melbourne, too the infirmary tending is first-class too humane, but Susan notes a mutual trait--from New Zealand to French Republic to the U.S. to Australia:
Looking back, I'm convinced that all the staff nosotros convey known were trying to render safe, efficient tending piece trying to come across all of the other infirmary criteria. It has never been an intentional excluding of us. But because there's non a tradition of including patients too families inwards policy decisions or putting them on committees, hospitals are ofttimes flight blind almost how to blend lineament too security amongst patient too solid unit of measurement satisfaction.
And finally, the realization that empowerment begins amongst self-empowerment:
Cath too I notice ourselves talking regularly almost how to broaden our compass [beyond serving on the hospital's Family Advisory Council] too link together the many like-minded people across the the world already working to meliorate healthcare. The grouping begins amongst modest enquiry too clinical projects, encouraging a civilization of appointment too partnership betwixt staff, patients too families--with the aim of creating a safer, to a greater extent than patient too family-friendly system. After a yr of coming together together, amongst passion too numbers increasing, an organisation--the Australian Institute for Patient too solid unit of measurement Centred Care--is born too a displace towards improved partnership inwards wellness is launched.
So, The Upside of Down is not, afterwards all, only almost 1 family. It is almost a designing seen worldwide, the disenfranchisement of patients too families inwards the delivery of wellness care. In the end, though, it is almost the might of normal people to overcome the inertia inwards the scheme too operate to create a partnership amongst the well-intentioned people who convey made wellness tending their lifelong passion.
Yes, Cath, I liked the book.