Qui to the Cure



Friday night my husband and I went to a fancy fundraiser. It was great to get out of our crazy world and enter one mostly foreign to us, at least to me, though my husband deals with it on a professional level almost daily. We got all dolled up and headed downtown. I can’t remember the last time I was downtown. Much has changed since, so it’s been awhile.

We went to an event for the Cystic Fibrosis Foundation called Qui to the Cure. Our connection is my husband’s job, not our cash. Paul Qui was the feature of the evening. I don’t watch Top Chef but apparently Paul Qui won Season 9 and is quite the Austin celeb for bringing a flavor of cuisine other than BBQ to this town. And it was good.

I got to meet a couple of people that my husband works with including one of the doctors from another office and a new social worker. (And don’t think I didn’t bend her ear to see if there was anything helpful in knowing for caring for N. We didn’t talk about N the whole time though.)

Honestly, it was nice to focus on a different genetic complication for the evening. We have lived and breathed Cri du chat for the last six months. Instead we entered another world of equally concerned parents wanting and trying desperately to do everything they can for their children. Though very different from N’s syndrome, this disease also brings with it heavy emotion, responsibility for daily management, financial burden, and the constant threat of loss. It was helpful to hear others’ fears, cynicism, passion and life.

I listened to other parents with greater empathy than I would have just six months prior. Though I didn’t share our story, I felt it bump up against theirs in a way which gives me greater understanding.

We are a select few. Not in an elite sort of way, like the sort of people invited to this fundraiser. Not something you want, yet something sacred. Something raw and rare and makes living on this earth take on a whole new meaning. Life goes on but grief arrests you. It does not await an invitation – for one would never be given. It does not make an announcement saying, “I’m coming!” It shows up in the most untimely manner and forces you to feel. It’s not fun but it’s necessary. For trying to avoid feeling leads to all sorts of addictions. So I’m learning this. I’m learning to lean into the grief. To face it. Even embrace it. As I do, I am receiving the power of God to live more fully in the moment and to live out my calling.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#cysticfibrosis

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