“Like the fire in the night
Like the ocean parted wide
Like the grave, empty inside
You will see He still does
Miracles, miracles, miracles, miracles
Even if you don’t see it now
Without a doubt, He’s already moving
There is not a pain that you hold
He doesn’t know, and He isn’t using”

If I just showed you these two pictures, what would you see? The same smile, the same bright blue eyes, that beautiful little dimple, slight darkening of her hair, but the nearly identical curls in a cute short style. Her 2 year old picture on the left, her 4 year old picture on the right. But what these pictures don’t show is the story that unfolded in the 730ish days in between them. For anyone that meets Brynna now, they would have no idea. No idea that she is an absolute miracle. No idea the battle she has fought (and continues to fight). No idea the pain and heartache and tears that have been shed. No idea the beauty that has come from the ashes. 

This post is one that I have been working on for weeks now. It’s something that I’ve struggled with how to convey my emotions into words, and wondered if it was something really worth sharing. But I want to share it. I don’t share it for sympathy, I share it to be real. I share it for others who are in similar situations. I share it for others who are fighting their own battles with fear and anxiety and worry. I also want to share it before I share our whole MAW trip post, because it was THIS battle right here, that helped me see and experience even more joy throughout our trip.

So, here is my heart…

Not a day goes by that I don’t think about it. Most days it is a quick thought, something that doesn’t take root in my heart or my mind. But not always. And when I let that fear begin to take root, when I don’t leave it at God’s feet, I spiral…

In January, I realized I missed a dose of her daily chemo, and I broke. I wept the whole way home from clinic that day, as the weight of everything came crashing down. The weight of responsibility of giving the right chemo at the right time, on the right day, the responsibility of ordering the chemo at the right time to ensure we don’t run out, the responsibility of remembering to renew prescriptions, remember changing doses, etc. It just feels never-ending, and realizing that I missed a dose of chemo was devastating. I felt like I had failed Brynna. Everyone (doctor, nurses, family, etc) assured me it happened, it was extremely rare to NOT miss a dose, and having only missed one up to this point, was a miracle. But still, I felt awful. When her counts took that unexpected drop to 0, 2 weeks later, the missed dose actually became a good thing, but still. The after effects of that were lingering.

In the days leading up to our Make-A-Wish trip, I worked myself into a frenzy. If you’ve followed the story, you remember how her immune system unexpectedly completely bottomed out, 2 weeks before our trip. I let my fear, worry, and anxiety over her numbers, over her health, nearly paralyze me. I was having trouble sleeping, having trouble focusing on anything for long periods of time, having trouble praying. I knew I was letting the fear and anxiety rip away at me, but no matter what I did, nothing seemed to help, and I couldn’t give it over to God. I was so terrified of her getting sick, of someone getting sick, of her numbers plummeting to a point where she wasn’t medically cleared to go. It seemed almost silly, knowing this was “just” a trip, that could probably be rescheduled…but I could NOT shake the fears.

And then she broke her toe. After we visited Ortho-on call that Friday morning, I dropped her off at my parent’s house (Cole was already there, and Wyatt was at school), and headed home for a little breathing room. I knew I was in a bad place. It had been building and building for weeks, for months. I can’t remember when it started, but the weight of it ALL has taken its toll. 

When I got home that morning, I crashed onto the couch and just wept. I started voicing out loud, all of my fears and anxieties, starting with the obvious, “I am so scared she is going to get sick before our trip.” As I spoke everything out loud, the floodgates opened, and it all came surging out…the reasons behind it all.

I am terrified. 

I am terrified of losing her.

I am terrified of relapse.

I am terrified that I won’t get to watch her grow up.

I am terrified of long term effects.

I am terrified of losing her.

I am terrified of losing her.

I am terrified.

The relief that washed over me, saying this all out loud, unloading it to God, was palpable. These are fears that are always there, always vying for my attention, always trying to worm their way into my heart and mind and steal my joy. Steal my joy of today. Steal my joy, of watching her flourish. 

I remember very clearly, the night she was diagnosed, when her doctor was trying to tell us in the most gentle way possible, how very critical Brynna was at that moment. When she asked if we had any questions, I told her that I had only one, and I knew it was one she couldn’t answer…., but “would Brynna be ok?? Would she make it??” All I wanted to hear was a resounding YES, but she couldn’t offer that. She told us that they were going to do everything they could for our little girl. 

I feel similar right now. I want so very badly for her doctor to tell me, “Wow! Brynna has responded SO incredibly well, she is definitely never going to relapse.” But that’s not possible. Many of our conversations include the phrase, “if she relapses”, and it’s horrific to think about. I can’t let myself think about it. Anytime I remember that she is classified as “Very High Risk”, my heart drops again, knowing that phrase means she is very high risk of relapse. But God is bigger. God is bigger than statistics, bigger than cancer, bigger than anything we face.

We are counting down the days until August 7th, her last day of chemo. We have the paper chain, that is nearly 365 links shorter than when we first made it, and we can count her steroid pulses left, on one hand. But guys. If I am honest, I am so very scared of August 8th. The first day without chemo. The first day of the next chapter of her life.

After my breakdown, and crying out to God, I dove into my Bible and devotion for the day, and wouldn’t you know it, God was there. I was a few days behind in my devotion, but God knew that. I read through Ezekiel 19 and then the commentary after said this:

“When we practice biblical lament, we offer our heartache to God and trust Him with the outcome. Praying to God, asking Him to see us and sharing our hearts with Him is one thing. Choosing to trust Him (Psalm 85: 8-10) and believe His heart of love toward us (Psalm 4:7-9) is another matter altogether. Talk to God about your pain, but also trust He is working.”

WOW. Wow. Wow. Yes. Amen.

It was almost as if God audibly spoke to me, thanking me for sharing my heart, my soul, my deepest fears with Him. I wasn’t ever intentionally holding back, but I also struggled with letting those fears out, and then FULLY and COMPLETELY trusting Him…remembering He is working…letting Him work. Lamenting means giving it over to God, and after that morning, I found I could breathe easier. 

We may never be able to hear the words, “Brynna will never relapse” from her doctor, but we do know this. God is in control. God has healed her, and continues to heal her and work miracles in her little body. Every day is a gift. Every day is a joy. Watch what I AM can do. Look what I AM has already done.

Working through all of these fears, all of these worries, doesn’t mean that they went away. They will honestly never go away, but I’m not letting them fester and bubble right under the surface now. It also helped me approach our MAW trip with such a renewed sense of wonder, of joy, of blessing, of HOPE. God is such a good, good God. No matter what tomorrow holds, God is a good, good God. 

And look at these pictures again. On April 8, 2018, if you could have shown me the picture on the right, I would have WEPT tears of joy and gratitude and more emotions that there are words for. I remember watching Brynna so much of that first year, wondering if we lost part of the little girl we knew. It was SO very hard to see her 2 year old picture smiling out at me from the fridge, seemingly full of life and energy and health, while holding a very fragile 2 year old Brynna in my arms, who was fighting hard. I remember my dad telling me he had to take the picture at their house down for a while. I also want to add in here, that I am in NO way trying to discount her in between pictures. I adore her 2 ½, 3, and 3 ½ year old pictures. Even though she had no hair, it doesn’t make her any less beautiful…in fact, it gave her eyes that much more brilliance, her smile that much more JOY. It is just amazing to me that if you didn’t see the in between, you would never know…but how much so does that in between lend to her resilience, strength, and just who she is, now? 

I don’t know what tomorrow holds. I don’t know what August 8th holds. I don’t know what her 5th birthday will look like. I don’t know what her 50th birthday will look like…but I do know this. She is here. She is a miracle. And God is a way maker, miracle worker, promise keeper, light in the darkness. That is who God is, and no matter what, that is who He will always be.

Images of our family, from Kara Powers Photography