How do you talk about everything?

It’s hard to figure out what to say.  

There’s been a lot to experience the fast few weeks.  Tiny new lives kick and spin and tumble inside me, small new lungs practice breathing and little hearts learn how to beat,  all while other hearts have slowed and stopped and breath that once was is no more.  Beginnings and endings, alphas and omegas, all brushed up side by side, smooshed up against one another like pre-schoolers fighting in line for a turn on the slide.  Support and love and care comingle with despair and pain.  The stuff of love swirls around with the utter emptiness of loss.    Opposites reveal how they’re not so opposite at all.  It’s Life– these past few weeks, it’s everything.

So how do you talk about everything?

Here is where I will start.

My sister-in-law Katie passed away unexpectedly a week ago.  Katie had a genetic disorder called prader-willi syndrome, which meant she was hungry all of the time because her brain did not tell her how to be full.  There was an ache in Katie– more tangible than the aches that are found in all of us, because her ache could be measured by looking at her brain and testing her blood.  But Katie taught me you can be free in spite of the ache.

Katie taught me that we can choose freedom in spite of the things that seek to imprison us.  Paradoxically, she was “forced” to practice choosing freedom again and again– and these minute by minute decisions– the decisions to play, to swim, to smile, to create, to laugh– instead of being overcome by hunger– had her living eternally from the start.  If we want to be alive– (and if we desire to be eternal, let us indeed figure out what it means to be alive)– we must figure out what Katie figured out– that we determine the reality of our circumstances.  That no suffering– even real, physical suffering– the kind that shows up in partially deleted chromosomes and muscle biopsies– can take away our freedom to love, to connect, and to cry when we hold something Good– like warm, amply-flavored coffee, or tickets to the Zac Brown Band, or our new little nieces or nephews.

Katie’s life taught me that we can pray to live eternally, or we can pray we live eternally now.  And how the second prayer is a far more important one.

Indeed, the question is not how to live forever, but how to live.  Because forever is too long if you don’t know how to be alive in the first place.  And Katie chose Life in spite of the ache, in spite of the hunger. And she reminds us how we can, too.

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5 Responses to How do you talk about everything?

  1. Thank you for your kind and inspiring words


  2. May Light perpetual shine on Katie. Thank you for the insight into this brave woman’s struggle. I too have a dear family members who is extremely courageous in battling a chronic illness that has no cure. She like your Katie inspire us all if we just pay attention to their daily victories. Hugs


  3. Val black says:

    A beautiful tribute to a beautiful lady. Words to love and live by.


  4. Julia says:

    I have goosebumps reading this. I met Katie at Blackhawk swim aerobics. She will be missed but her light shines on forever.


  5. barb bichel says:

    So beautiful. Thanks so much for sharing.


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