Thursday, February 3, 2011

Share the Love for Quinn: Expectant Living

I know of a woman who had four children during the 1940s and 1950s. Three boys and a girl. The three boys all had cystic fibrosis: two died as very young children and one died when he was 17. And his mom said his health caused him a miserable existence. So incredibly tragic.

Fast forward to 2011. It is a different experience to be born in this day and age and have cystic fibrosis yet the phrase "life expectancy" is still a part of our vocabulary. There is a twisted tension I've come to recognize when I consider "life expectancy". I hate that it is even part of our vocabulary. But it is. And it is because people with CF--my child with CF--has a shorter life expectancy than those without. The predicted median age of survival for someone with CF is in the mid-30's which is how old I am right now.

I am grateful that research has produced significant discoveries which have increased the quality of life and life expectancy. But I'll give you a peek into my brain and emotions: this Christmas there were some pajamas I was considering buying for Quinn and saving for next year.
And I chose not to buy them because I was afraid he wouldn't be here.
That he will die.
That I will have to plan his funeral.

That is a reoccurring fear for me that I've had since Quinn was born. I'm pushing myself to confront that fear by even sharing this in a "cyberspace" kind of way. Pushing myself to acknowledge that we live in 2011 and not the 1950's and that Quinn has his own unique journey.

I have two thoughts about "life expectancy":
1. Life is fatal. That probably sounds a little extreme but there is some irony in all of this talk about how many days we each will live. "Life Expectancy" is derived from the law of averages and that law may or may not fit. I do know that each one of us will die. Period. And that I have a deep conviction to teach Quinn about the realness of Heaven. And the love of God.

2. It isn't about years, it is about hopes. What do I expect out of life? To love family. To love friends. To follow Jesus. To love others. To laugh. To cry.

I want all of these things for Quinn. I want him to expect these things in life too and not worry about his days being longer or shorter than others. I want him to know that his life has purpose and meaning.

And that he lives each day to the fullest. Expectant Living.

Consider donating to Team Win with Quinn as we raise money to further Cystic Fibrosis research.

3 comments:

Olivia said...

So. very. true. Thank you for writing and sharing truth while you share your story. I love you, and we all love Quinn.

Raegan said...

Mer,

What a horribly fallen and broken world we live in. Thank you for sharing your journey to "
Expectant Life" rather than Life Expectancy. That pragmatic process emphasizes a lesson we must all learn, not one of us is promised a tomorrow unless we have accepted the gift of our Savior.

O'Connor & Sedaris said...

What a gift that Quinn has you as his mom.
Quinn is not part of any formula...your honesty
Is amazing. Thank you for sharing. Hugs to you, Sarah