Monday, October 20, 2014

Suffering and the Preemie Perspective

"Suffering is not the absence of goodness, it is not the absence of beauty, but perhaps it can be the place where true beauty can be known."
 
This quote stuck with me. I read it weeks ago but keep coming back to it. I had never read a better description of what I was learning in my own life, through my son. His birth, his story, and the beautiful, but hard lessons I take from it.

It is all because of suffering.

Jack's story is not easy and it is certainly not roses. He has lifelong medical issues resulting from a tragic birth. And yeah, in order to survive, we have learned very quickly to find silver linings. To celebrate the ability to take even a breath. Or give a smile. Or conquer a therapy appointment. Instead of huge expectations, we know that it's the small things that bring us joy in this life.

And such is beauty and goodness. I can attest it happens in the midst of, and sometimes because of, horrific circumstances. It shows up when you are desperately trying to grasp the big picture. It shows up when your child is deathly ill, getting meds through a feeding tube. It shows up when surgery after surgery becomes the norm of your child's life. It shows up after a sleepless night of worry. It is in letting others come alongside you to support you, even when you've been hurt by callous actions in the past. It shows up when you choose to believe in God, even when you aren't sure he even exists. As much as I wished it was different, so much growth comes during these times, even when I can't see it, hear it, or feel it. Even when all hope is lost.
 
Human tendency is to go the opposite direction of suffering. Sometimes it means that we distance ourselves from pain and only join in to celebrate overcoming. Lauding those who beat the odds, or those who have no odds stacked against them in the first place... that's easy, right? And pleasant. It is surely fun to praise a winner - a person, an event, an accomplishment. It may even feel good and beautiful. I am certain there are things in this life that come through no suffering, but are worth celebrating.

But that is not the story I am talking about today.

Those looking for the perfect outcome may not want to read our story. Jack will never be the poster child for "best miracle with no lasting effects of prematurity." If anything, I hope we've been totally upfront with our readers about Jack's medical and developmental issues. We never set out to create a blog world that is different from real life. While it's true I don't share everything about Jack with you, my goal is to not gloss over the suffering in favor of the happy stories.

And please, please don't read this wrong. We adore our good days. We celebrate good things. We share them with you! But the reason we know they are so good? It's because suffering has been a powerful sharpening tool and a very large part of Jack's story. Simply, the quote reminded me that I don't want to gloss over that which makes life most beautiful, just because it is not easy. The more I experience, the more I learn that suffering underlies so much of this preemie perspective that I have come to cherish.

 
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4 comments:

Jennifer Dein said...

I just wanted to tell you that I love your blog. It is so beautifully written...and clearly the pictures are wonderful! Thank you for sharing and thank you for inspiring me to share our story. If you'd like to read it, visit www.defyingthediagnosis.com. You and Jack and your whole family are amazing. Thank you!

Anonymous said...

Jessi, you write beautifully. Thank you :)

Amber said...

Just wanted to thank you for continuing to share. So many people forget that there are hurdles after we get home from the hospital. My boys were in the NICU for 6 months, so I feel like it's assumed we're past all the trials. Our calendar full of appointments with specialists would suggest otherwise.

Jessi said...

Thanks everyone. I absolutely love hearing from you!