This is part one in a two-part series entitled: Field Notes of Pain
Field Notes of Pain - The Art of Life
“Darling, you feel heavy because you are too full of truth.
Open your mouth more.
Let the truth exist somewhere other than inside your body.”
I feel “ick” today.
Maybe a bit sad or tired, I am not sure which. Or hungry. Those three tend to blend together.
Jayden and Brooklyn are fine, not sleeping, but fine. As fine as two dying kids can be. In fact, most days, I fear they are doing a better job of living than me. Justin says I am too hard on myself. Perhaps. Ellie is great, too. Still asking a bunch of questions like most four-year olds do, and playing baby. Specifically, “a baby named Ellie who talks with her eyes. And crawls. And walks. And laughs. And giggles. And sleeps.”
Ellie has this book, In My Heart: A Book of Feelings, you must read to your children. In fact, everyone should read it. It talks about how somedays, our heart can feel as heavy as an elephant.
Yeah, that’s how I feel, heavy and a bit jacked up.
And I am not exactly sure why. It could be the weather changing, the silence of the house now that the kids are back in school, the lack of sleep, or feeling like I am constantly failing at life, I am not sure—but today is a heavy day.
Yesterday wasn’t. Yesterday was a light day. A busy, productive, house-full-of-people day. A day for laughing. Seems the busier I am, the less heavy I feel. Not that heavy isn’t there, it always is. I just don’t feel it as much.
I’ve been learning a lot from Scripture lately. Did you know there’s some really convicting stuff in there? I think maybe that’s why it’s hard to read. That, and all the big words. But seriously, loving the way Jesus models, sacrificing comforts, dying to self, trusting a God you can’t see, it’s all a bit tough to replicate. So when I hold up who God wants me to be against who I am, I feel really crappy about myself. Which is good, because God in his mercy, still loves me all jacked up. It makes Him happy I come to Him all broken and clumsy. And I want to make Him happy. In fact, I think that is how He likes me best. Dependent and a bit jacked up because it’s hard to be prideful and independent when you’re jacked up.
Anyway, yesterday I felt good.
Productive. Present. Engaged.
Today, two coffees and an expresso in, I am tired.
It comes like waves, doesn’t it?
Grief, anxiety, doubt, and sadness.
Connection, bravery, resolve, and productivity.
Wavering is normal, the rhythm of life, I suppose. I like that negative feelings come and go, but I’d love for the good ones to be a bit more consistent. The moments after I sense a burst of warrior spirit, fierce confidence, or go get ‘em attitude, it just vanishes.
I imagine it’s a lot like surfing. I fight to get out far enough past the break, to the place I can even catch a wave. I wait. Wait for the rise, the invitation. I feel it swell. I participate. I ride the wave until it disappears, until I am sucked under and tossed about, finally finding myself right back where I started: The Shore. The place I tried so hard to leave.
No matter how hard I try, I can’t stay on top of the wave. I can’t stay light.
But no one does.
That is the art of surfing.
The rise, the ride, and the repeat. That is the art of life. And we hope at the end of the day, we’ve either moved a bit more down the shore or at least, survived the sea. We hope we can look at our life and say, “it was good.”
I waver between feeling strong and feeling weak daily. The moment I believe I’ve got this, it’s gone—fear, doubt and panic take its place. It feels like walking in circles. I try so hard to get to a place of peace, acceptance, normalcy, only to realize all I have done is worn deeper the path back to start.
But what is left behind after years of our wandering? A path we’ve walked so many times before—full of memories and reminders. A path for others to travel.
I have heard grief isn’t linear, and I suppose anticipating it isn’t either. So although we have been here time and time again, it is never exactly the same. Certain things feel eerily familiar, others feel heavy and new. When we keep surfing, keep walking, though, something beautiful happens. We get stronger. We build muscle memory. We leave bread crumbs. That’s why we keep showing up because we have learned truth exists in the tension of light and heavy. In the rhythm of the rise and the fall.
That is the secret. The sweet spot, the hardest spot, in the center of the tension and the rhythm. It’s exactly where we need to be.
It gets harder.
It gets easier.
That’s the art of life.
*Used with permission.
Writer and Speaker
Stefanie is a writer and speaker, best known for her unique perspective when it comes to difficult circumstances. She is no stranger to the pain and beauty of this world, and the tension that comes from living in the midst of both. Most importantly, she is a wife, mother of 3, and an inspiration to many.
Stefanie started writing and speaking as a way to share the things she is learning from parenting her children, two of whom have a rare, regressive terminal disease, called Sanfilippo Syndrome.
In the midst of the pain and suffering that comes from knowing you are going to lose two of your children to an incurable disease, which most people would consider their worst nightmare, we see Stefanie’s strength. And she will be the first to say that it comes from her faith and trust in Christ.
On November 13 2017, Stefanie’s son, Jayden went to be with his Savior, just eight months later, their daughter, Brooklyn (9) did too.