Right here, right now

(Originally posted on Instagram, I thought I’d share here as well.)

It’s an FUCF kind of night! ⁣The kind of night that steals usual bedtime giggles, snuggles and tender 9-year-old-prayers and replaces them with worry, tears, and a kind of fervent praying that a child her age shouldn’t be so familiar with.⁣⁣

“I’m worried that I won’t have you for a long time,” she says through tears. These nights are happening more often as she gets older, even though I’ve been quite healthy. She knows the reality of CF and it’s something that haunts her. ⁣⁣

There are moments that no parenting book, no advice from loved ones, or nuggets of wisdom you’ve picked up along the way can prepare you for. ⁣Moments that feel like a fist tightening around your heart, making it nearly impossible to think or even breathe.

These moments, the ones when her eyes are filled with fear and her cheeks are tear-stained, always take my breath away. ⁣⁣

⁣⁣I tell her: ⁣⁣
“It’s okay to be worried. ⁣⁣
It’s okay to get sad.⁣⁣
But I’m right here, right now. ⁣⁣
And that’s amazing!” ⁣⁣

I reassure her. I promise her I’m fighting my hardest every single day. I tell her about the new medications that have recently come out, and even more that are being worked on. I hold her hand, caress her hair, and tell her that perhaps we can help each other be brave. ⁣⁣

She doesn’t know that she already makes me brave. She doesn’t realize that I had no clue what life was supposed to be about until she came into mine. She couldn’t possibly know all that she’s gotten me through already, or that I say the same prayer that she does every night of my life.⁣

⁣She has no idea how often I say to myself: ⁣⁣
”It’s okay to be worried.⁣⁣
It’s okay to get sad.⁣⁣
But I’m right here, right now. ⁣⁣
And that’s amazing!” ⁣

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