This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I never met Sage in person.

It feels like I did .

Gah, did I? Hadn’t we seen each other in real life? Traded a hug somewhere? At an event? Had we ever crossed paths on clinic day?

No, and yet I feel like I know her. People with Eli’s disease aren’t supposed to get within a few feet of each other. There are infection control guidelines in place. That’s because certain bacteria that don’t hurt regular lungs are drawn to CFers’ lungs, where the resulting infection can cause a lot of damage.

That aspect of my son’s disease is a huge bummer. The rules are not adhered to all of the time; sometimes people with cystic fibrosis will marry each other, or become close friends who use common sense precautions when they hang out.

Anyway, because we’re not supposed to get in each others’ spaces,  this community is really active online and organized well in other ways, despite the challenges.

Sage, I think, read this blog regularly.

I reached that conclusion because she often left us comments and messages of support over on the Facebook page.

I followed her life through Facebook; I knew she’d been fighting hard against CF symptoms and had recently moved across the country. A friend of hers (Hi Lizzy!) noted that she’d been approved for a lung transplant. Then her family members noted she had had a CF exacerbation and those plans were put on hold.

Before she moved north Sage was one of a few hundred people in the state of Oklahoma who have cystic fibrosis.

She died this week at 34.

I’m proud to have known Sage, even a little bit. I liked some of the same things she liked, from silly things like making fun of Bachelor and Bachelorette contestants to serious things like trying to make life happy and meaningful whatever the circumstance.

I’m proud of everything she accomplished, that she got to go to college and get married. I’m proud of her for her fight, her attitude, her faith that her soul would carry on even when her body failed her.

Let her life be a reminder to live every day like it is a precious gift, as she did.

Rest in peace, Sage.



3 thoughts on “Saying goodbye to a reader

  1. Kathy Hatfield says:

    I’m so sorry, Julie. Breaks my heart.


    1. j&m says:

      Thanks! My heart goes out to her friends and family. While we didn’t know each other well she was a part of this little community. I felt her presence and she will be missed!


  2. Vallery says:

    I knew Sage. I did not know she had CF. I remember her as beautiful, kind and fiercely intelligent with the most beautiful, curly blonde hair. I think everyone who’s known her – even if only a little bit – is better for it.

    Liked by 1 person

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