Love You Forever, Lisa

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Celine Dion wrote the song, Fly, for her niece who had Cystic Fibrosis

1988 was a big year for my family – my brother got married in June, we got married in September and my baby sister, Lisa, died 6 weeks later on October 20^th. 

I know it is common practice not to use the word “died”, but this was one of Lisa’s pet peeves.  She was only 19 when she died, but was always very mature for her age; she was very creative and gave issues a lot of thought.  

When my parents adopted her, she was a very sick little 6-month-old baby who had trouble breathing due to Cystic Fibrosis (CF). 

CF attacks the body in 2 ways – the pancreas does not produce enzymes to digest their food and their lungs produce a very thick mucus that makes breathing a challenge at the best of times while also making them more susceptible to lung infections.

When my sister was born in 1969, there weren’t many kids with CF who lived to their 20’s.  It makes me so happy to see that the life expectancy is now 52; that’s a big improvement in the 32 years since Lisa died.

One of the medical advances has been the discovery that people with CF will pass a particularly deadly chest infection called Pseudomonas to each other.  (I remember knowing that word at a young age because Lisa would sometimes require hospitalization to receive IV antibiotics to fight this infection.)  This discovery means that people with CF are encouraged not to gather together now, but that was not the case when Lisa was growing up.

We would participate in family activities like swimming or bowling and seasonal parties through the Kitchener-Waterloo Chapter of the Cystic Fibrosis Foundation. 

Lisa started going to summer camp with other kids with Cystic Fibrosis when she was 8 – first for a couple of weeks and then for the whole month of August when she was a teenager.  She LOVED camp!  It was such a great opportunity to normalize their reality and be with lots of other kids who took handfuls of pills with every meal and had to have treatments twice a day (where they would wear a mask to inhale medication to help break up the mucus in their lungs and then lie on an angle down and have their chest and back pounded with a machine).  Then for the rest of the day, they could swim and canoe and waterski and enjoy campfires…and experience summer camp!

The other side of the camp experience was that every year when she went back, someone who had the same disease she had, had died; it really brought her mortality front and centre at an age when it was the furthest thing from our minds for the rest of us.  

Hence, Lisa’s consideration of death and insistence on the word “died” as a teenager.  She used to say people didn’t “pass” or “pass away” or “cross a bridge”, they “died”.  Now, I can say “passed away” for other people, but not for Lisa.  She was a wonderful, creative, sarcastic, funny, strong young woman who knew what she thought and wasn’t afraid to share it; I’m afraid of lightning bolts from above if I say that she “passed away”!

One of the things that makes me saddest when I think of my sister is that my kids never got to know her; she would have been an amazing aunt!  They would have done fun activities and she would definitely have been an ally when mom and dad weren’t being fair!  They also would have counted on her to call it like she sees it and give them an honest opinion of their behaviour. 

I like to imagine that she is loving having my mom with her, and that they are enjoying a celebration of the day that she got to shed the earthly body that only lasted 19 years…and fly.  

Love you forever, Lisa xo