Change.

On Sunday August 13, I sat in my bedroom and cried.

It’s a posture I’ve gotten used to since Diagnosis Day in 2021, but for some reason this night felt different. Atticus had his big scan in the morning and my mind felt like it was in a literal war with itself. My humanity was screaming all the anxieties racing through my brain with reckless abandon. Images of my son in a surgery room separated from his dad and me were flashing through my mind along with what a scar would look like on his shaved head, angry that he already had a scar on his back in the first place. My heart was breaking over the possibility of having to put my baby under, angry this was our reality and so frustrated we were still being told, “We just need to wait and see.” My stomach was aching, my mind was racing and I found myself yet again sitting on the edge of my bed begging and interceding for my son in prayer. If we’re being honest, I was tired of being in that position.

I’ve written and re-written this post about three times now. There are so many things to be said when you find yourself constantly having to be faithful in situations you literally cannot do a thing about. I couldn’t magically make Atticus’ ventricles stabilize no matter how badly I wanted to. I couldn’t magically predict his scan was going to come back clear, and we could be in the small percentage of Fetal Surgery/SB families whose baby didn’t need neurological intervention. I couldn’t take away this burden from my son because he was chosen to have this story; the good, bad and ugly parts. Nothing about Spina Bifida is within my control and honestly, it’s just plain irritating sometimes. Like, what does it mean to feel “normal” as a parent when your kid will never be medically “normal” anyway? I used to think at one point I would get used to doctor visits, clinic days and whatever threat loomed over Atticus just because that was the way our life was. I’ve come to find you never get used to it, you just learn to live with it.

That Sunday before clinic while praying in church, I remember having a private moment with God during communion. On my knees and praying (another position in which I’d gotten super comfortable), I remember talking to God and stopping mid-prayer. Time and time again before clinic, my behavior had been the same:

Have big emotions.

Be nervous.

Ask for prayers.

Pray fervently the week leading up.

Go to clinic.

Absorb the doctor’s information and go from there.

In that moment, though, I wondered What if this time it’s different? In a prayer I say quite often, there is a portion that says (paraphrase) “Whatever you decide, help me to respond in a way that is still faithful, no matter what is done.” That simple little line kept repeating in my head and immediately I was reminded of Mary again.

I often wish I had a direct line to Mary so I could talk to her in times like this when motherhood feels incredibly difficult and unfair. After all, she did birth the Savior knowing he was fully hers, yes, but also fully God’s. His future was known and unknown to her at the same time. I just sometimes wonder how she dealt with and handled that pressure, knowing her son’s life trajectory was completely out of her control. Yet, she still said, “yes.” Emphatically, without pause, she said yes when she was told she was going to give birth to Jesus. She said yes when she was told she was seen with favor. And she still said, “yes,” even as her son was suffering a terrible death in front of her. Her faith never waivered even in one of the darkest moments of her life, she still said yes. I admire her courage and wish that my life mimics even half of hers. So sitting on my bed that night, my son sleeping in his crib with nothing but a wall separating the two of us, I decided this time it would be different.

This is a topic I’ve written on plenty of times, mostly because you really don’t get comfortable with having no control over your life. Especially when it comes to your children, putting your full and complete faith in God that they will be okay even if you do not have the guarantee in that moment is so incredibly difficult. At the same time you’re awarded this odd sense of peace in knowing that lacking control you gain control in some regard. We’re wired to desire the pain for our children so they don’t have to experience it. We want to take away everything that hurts so they can feel nothing but happiness, peace and joy regardless of what’s going on around them. Especially as little children, we don’t want their spirits to ever be dimmed or dampened before the weight of a broken world has a chance to get its hands on their light switch and turn the brightness down just a little. We want their spirits to shine, fill every space in which they find themselves and create a path littered with the things that make them happiest; all the while we shield them and protect them from anything that can hurt. I want my son’s bright blue eyes to always be filled with wonder as he looks at the world around him. I want him to be full of confidence in who he is before the world tells him who to be. I want him to always giggle that infectious laugh that can immediately turn a sour mood happy. I never want him to feel the burden of life before it’s too soon. But is it really shielding our kids if we’re so wrapped up in our own anxiety about what they could go through that we end up missing moments with them in the process? I still don’t fully have the answer to this, but here is what I figured out that night.

We have to decide just how much we really mean it when we say we trust God.

Fetal surgery wasn’t my moment of faith (I mean, it was. But it wasn’t the moment). The first year of Atticus’ life wasn’t my moment of faith. The night before his final MRI to diagnose whether or not he would need neurological intervention was my true moment of faith, and here’s why:

If we were to find out Atticus needed the ETV-CPC, what would my response be like? Would I be devastated and begin spiraling in anger because my child was going to have to go through pain, or would I respond like Mary? “Behold, I am the handmaid of the Lord; let it be to me according to your word.” (Luke 1:38) I sat on my bed and cried because I felt pieces of me breaking away that were really painful to let go because they were always my fallback when life felt the most out of control.

I want so badly to protect my son from everything that I will put myself through anything possible to make sure he doesn’t feel pain. But is that faith? I mean, bad things just simply happen. They’re not object lessons, they’re not to teach us some deep and meaningful lesson. They are the byproduct of living in a world that was broken by sin. They suck, they’re painful, they create trauma scars on our hearts that take time and effort to heal from, and sometimes the pain just doesn’t go away. Life. Is. Painful. And. Unfair.

But God calls us to trust him anyway.

With my son and his MRI results that could change the outlook of his care for the rest of his life.

With the scar I carry on my body that is a constant reminder of one of the most trying times of my life.

With the scar on his back he will carry with him forever.

With the fear of the unknown.

With the pain of the unfairness of a disability that will never be cured.

With the anxiety that comes knowing my son will struggle at some point in the future and I can’t do a dang thing about it.

With the knowledge that Cameron and I will have to have discussions with Atticus other parents don’t have to with their children.

With the desire to shield him so he never loses the spark in his eye.

With the heartbreak of knowing I can’t do a freaking thing about Spina Bifida.

God wants me to trust him anyway.

So I sat and cried because I knew I was losing control of the situation that faced me in the morning. But that was the choice I was putting my full confidence in, once and for all.

Deuteronomy 6:4–9

4 “Hear, O Israel: The Lord our God, the Lord is one. 5 You shall love the Lord your God with all your heart and with all your soul and with all your might. 6 And these words that I command you today shall be on your heart. 7 You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. 8 You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. 9 You shall write them on the doorposts of your house and on your gates.

At the end of the day, my son and husband are on loan from God and I am responsible for their care and love while they are here. Part of that love is knowing when my desperate need for control is actually hindering all of us from our relationship with each other and with God. It’s painful to admit because in that moment I was afraid if I stopped trying to be fearful of Atticus’ future and care that it would open the door for more pain to come to him for which I didn’t have a plan. If I wasn’t worrying was I really being a good parent? But then if I’m worrying to that extent, am I being a good steward of the gift that is my son? That was the question I couldn’t answer. That’s why I decided that night to change. My praise wouldn’t be linked to only answered prayers and the good moments in Atticus’ life in relation to his diagnosis. My praise would be for all parts, no matter how painful it was for me to relinquish that control.

Proverbs 19:21

Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.

I just want my son to have indisputable faith in God that his life is protected, even through the challenging and painful times. I don’t want him to struggle with worry and anxiety like I do and let it keep him from enjoying the life God has created for him. Even though he is only 19 months old, I know he watches every move I make and listens to the words I speak. My reactions become his reactions, my words are his words. I don’t want him to have empty feelings when he says, “I trust God with my life.” I want him to KNOW that he trusts God with his life without a shred of doubt. That starts with me.

The Monday of SB clinic, we got in the mom wagon and drove to Nashville. For some reason, it always seems to be raining when we have clinic days and I am convinced it’s because the universe is just as over it as we are when we get ready for these appointments. Traffic was no big deal, getting to the hospital was a breeze, and Atticus was in great spirits when we registered him for his MRI. Cameron swept him up when they called his name and with a quick kiss and a hug, he was off to his scan. I nestled myself in the same set of chairs next to the main stairwell of the hospital, turned my phone off, and began praying hard; harder than I have in a while. Eyes closed, hands cupped up and mouthing to myself, I prayed over my son and asked for faithfulness for myself. Whispering verse after verse of God being faithful to those who love and follow him, I began praying out loud to myself. Without caring who walked by and what they thought when they looked at my corner of the lobby, I prayed. I asked God to keep him calm during his scan, to keep him from being afraid. I begged God for the results that we were so desperately wanting to hear, but also prayed that my response would be faithful to him…even if we got the news we didn’t want. I prayed the name of Jesus over Atticus to the point where it felt like I was praying nonsense, but at the same time I felt a shift in my heart that was a new feeling than the ones I’ve felt in that particular lobby. Confidence.

I heard his little voice say, “Mommy?” and looked up to see red, teary eyes and Cameron’s smile as they both walked toward me. There was no fear or anxiety between us, no worried looks as we packed up to head to the 6th floor. Honestly, Cam and I were both sort of excited to go and have the results read. I knew in my heart God would be with us, no matter what his scan read. I was confident that God had a plan that morning and that we would receive a blessing either way it went.

The journey of faith is really never one in which you arrive at your destination this side of Heaven. Honestly, I sometimes envy new and young believers because they are so filled with passion and excitement about their newfound faith that nothing seems to deter them from trusting in their beliefs. Just like with anything, you get better at time but sometimes you have to get tired of your own crap and decide enough is enough. I was tired of constantly feeling fear over my son’s diagnosis, worry that my faith wasn’t fully complete because I still had these worries…and so I was done. I got out of my own way and started the process of letting that part of me that desired control over everything to finally die out like it needed to. Will it be perfect? Not at all, but I am determined to make it better with each moment that pops up in our path that makes us worry and fearful.

Atticus was given the results we were hoping for. His ventricles have stabilized, his third ventricle is still shaped correctly. His fluid pockets in his skull are exactly where they should be. There is no indication of hindbrain herniation and his Chiari malformation has pretty much fixed itself and is only minimal (feel free to Google what this means. You get a baby M.D. in your kid’s diagnosis after a while). His neurological performance is about as perfect as it can be and his cognitive development is growing faster than some of his other growth markers (hence the big head…big brain problems). Cameron and I were relieved and overjoyed, naturally. But the thing that excited me the most was that assured feeling of confidence as we walked into clinic that day. Call it spiritual resolve, but I was determined to be faithful in my response no matter what happened. My mind fought against me the entire time we waited for the neurologist to come in, and every second I wasn’t paying attention to my thoughts they were immediately leaning to morose outcomes that were terrifying to think about. However, when the neurologist walked in I felt confident my God was sitting in the exam room with us; his spirit wrapped around Cameron, Atticus and myself as if he were bracing with us when she read the results. My God was also with us when she left and closed the door, telling Atticus how proud of him she was. God was with us in the hallways of the hospital as we walked to each part of our day reminding me, “When I say I have you, I really mean it.”

September 24, 2021 was the real beginning of this journey of change when I received the phone call from Vanderbilt saying we were candidates for Fetal Surgery. Locked out of the school in the inner courtyard, I distinctly remember the voice of God asking me, “How much do you trust me?” I didn’t know then but my answer would actually be challenged over and over during the course of the two years between then and now. Sometimes they were easy challenges, and sometimes they felt like there was a small part of me that needed more proof of God’s trustworthiness. How can we fully trust something we cannot see when it could totally change the rest of our life? The heart is so fickle and will quickly forget the moments when God was faithful to us, especially during the painful times. We were never meant to control things. Sometimes control is a false sense of security when you’re too afraid to let go of the things that don’t serve you well and keep you from the life of freedom in Christ you were designed to have. However, it is my mission to make sure when God asks me time and time again, “How much do you trust me?” My answer is without hesitation: fully. Especially with my son.