We have heard over and over again that our daughter is a miracle baby. And in many ways she truly is. But every time I have to remind someone that a miraculous surgery did not “cure” her disability, my heart breaks a little bit more. Yes, she’s so darn cute and her smile brightens everyone’s day. Yes, looking at her (for now) you’d never know how much she’s overcome. But there are still setbacks we’ve had to face, and things we will always have to deal with.
Logically, we were prepared for Callie to be developmentally delayed; we knew that Callie wasn’t going to meet most milestones on time and there are some that we still don’t know if she’ll meet at all. But being logically aware that your child’s disability will affect them in certain ways is very different than living it. Watching other babies who are younger than my daughter surpass her abilities.
Watching her work in physical therapy on a skill that most others take for granted.
Watching kids run and play and feeling uncertain if yours will ever be able to join..
The heart is not as easy to prepare as the brain for that emotional anguish.
We are part of a very niche group of people whose precious babies qualified for life changing surgery that could alter the trajectory of their lives. We heard all of the positive impacts that her surgery could have on her life and all of the ways she could be better off for having the surgery. We risked my life and hers to give her the best fighting chance at “normal,” and so far we are taking (what feels like) losses left and right. We were told that surgery cut her chances of needing a shunt in half, and that I would still most likely be able to deliver vaginally, and that they’ve seen the surgery reduce the chances of developing neurogenic bladder and bowel dysfunction. It all sounds amazing.
So what happens when you don’t get any of them?
“It’s just not fair.” Anger. Tears.
“Why not my baby?”
I used to read the new testament and not think twice about all of the miracles Jesus performed. Now, in my cynicism, he seems a little bit like Oprah. “You get a miracle! And you get a miracle! And YOU get a miracle!”
But what about my baby? Why not Callie?
That will be the first question I ask someday when I meet God face to face. But until then, how do I handle the anger and anguish that comes with not getting a miracle?
Well. The answer isn’t pretty. Sometimes I feel like a toddler throwing a tantrum. I believe that God sees me in my anger, throwing a fit about how unfair life has been to my family and my daughter, and He is simply waiting in a corner for me to calm down so He can speak to me when I’m in a calmer place. Just like I do with our three year old. I’ve learned that God can handle our anger; He is big enough to understand that we can logically know that He is good, but feel anger and frustration boiling over in our hearts. I’ve learned that so much of walking through this journey is showing up even when I don’t want to. Finding ways to reach out to God even when I’m so angry and don’t want to.
That way I pray has changed. God doesn’t work like a vending machine; you can’t press B2 and get exactly what you wanted. Instead of “God please give us a miracle today and let her testing show no issues,” it has evolved into “God give us the strength to process these results with grace and find the courage to be who Callie needs us to be.” So does it frustrate me when others tell me they are praying for miracles for us? Yeah, it does. But who am I to tell someone how to pray? I have two music degrees, and none in theology. They can hope and pray for divine intervention, but truthfully, I’d rather them pray for our girl to be exactly who she’s going to be, and that she will feel God’s love through each hurdle.
The way I show up for my faith has changed. I show up when I don’t want to. I go to church even if I’m feeling angry. I continue to put in the work, even when I’d much rather throw my hands in the air and walk away. Sometimes my prayers sound like this: “God, I’m still really pissed off. I don’t understand how you could let this happen. I don’t understand what we’re doing wrong, and why you won’t do something. Anything. But, thank you for the beautiful sun set today. For showing me that you’re there even when I don’t feel it. Show me grace as I continue to navigate this journey, and keep encouraging me to show up in whatever ways I can. Amen.”
People will often tell my husband and I that we have been a “true testimony of faith” and to be frank, it does not feel like that in the slightest. Or that we’ve been “so strong” but in reality it feels like we’re keeping score with God. And losing.
Today, I’d just like to be a pillar of reality instead of strength. Do I have all of the answers? Nope. Am I ever going to understand God’s hand in this? Someday, after my soul has left this Earth. I’m just trying to figure out how to put one foot in front of the other. And though that sounds like the bare minimum, it can be exhausting. So if you’re exhausted too.. I see you. And I don't have have the answers either, but I'm here with you.
Most of this journey has become a choral soundtrack that plays on repeat in my mind. Today’s song is “Even When He is Silent.” https://youtu.be/hYwYMngq4II
I believe in the Sun, even when it’s not shining.
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