Comfort.
Atticus is hilarious, y’all.
This kid has such a fun personality at three months, sometimes I can’t stand it. He’s so happy, smiley, and talkative. As I’m sitting here right now writing, he is laying in his Pack n’ Play looking at his fishy mat laughing and talking to a starfish. How I get anything done is still a mystery to me. I could literally sit and watch him all day. Mine and Cameron’s world has been turned upside down with having a baby in our house, but y’all I can’t imagine having it any other way. He brings so much light and happiness to our lives. It sounds so trite to say, but I sometimes can’t remember what life was like without him. I am so thankful we don’t have to do that.
The happy times with Atticus are finally starting to outshine the moments of fear. I can feel life getting lighter the farther we get into this journey with him. Sometimes, though, I am still surprised at the weight trauma can carry when you least expect it.
The Spina Bifida community is amazing, especially if you are a parent/Fetal Surgery patient. Cameron and I are involved with numerous parent groups on social media, and sometimes just having the knowledge there are families who walk the same path as you do each day is enough to get through uncertainties with your babies. You don’t have to explain anything, you don’t have to preface it by saying, “Yes, but…” These people just understand. They understand the uncertainty, the fear, the weird celebrations you have with your child when they do something as mundane as have a normal bowel movement without assistance. They just get it. Inside of these groups are tips and ideas for your kids as they get older. In Kentucky, there is the Spina Bifida Association of Kentucky that does meet-ups all across the state. There are resources and answers to questions for things like how to navigate orthotics, assistive devices, catheters, diapers, etc. It’s a wonderful thing to be part of. Cameron and I have learned so much about Spina Bifida simply from reading about the experiences of others and let me tell you…it makes a huge difference.
The mothers who first enter the group, though, those are difficult. The ones who are being considered for fetal surgery or have been denied, the ones who receive “termination” as an only option for their diagnosis desperately looking for answers; these are the posts that hit the hardest.
A mother posted about being accepted to be considered for Fetal Surgery at Vanderbilt three weeks ago. Monroe Carell Jr. Children’s Hospital at Vanderbilt, Children’s Hospital of Philadelphia (CHOP), and Children’s Hospital of Seattle are three of the big hospitals that started their research for Fetal Surgery and conducted the MOMs trial. Being accepted here is an incredible honor. For me, having the opportunity for Fetal Surgery here is the equivalent of going to the Ivy Leagues for college; not everyone gets that moment. In this group, I’ve seen multiple families be turned away from these hospitals for not meeting criteria for being good candidates for various reasons. This mom, however, was accepted and was given her Fetal Surgery date. This was when I realized trauma responses are incredibly real and sometimes not easy to recognize.
A few days after she posted her acceptance into the Fetal Center at Vanderbilt, I noticed it was getting hard to wake up early and get out of bed in the morning. Mom was in town, so I equated it to a few extra hands to help with Atticus. What’s a few extra minutes of sleep, right? A few days turned into a solid week of not waking up until almost 7:30; an incredibly late morning wakeup for me. I also noticed my appetite was wonky. Either I was eating too much or not eating at all. Then there was the inexplicable tears whenever it came to Atticus. Sometimes I would walk into his room and just look at him sleeping, tears would start coming. As a new mom whose hormones are still trying to work themselves out, it’s not uncommon for me to get teary over small things. A while back, Cameron accidentally spilled my iced coffee from Starbucks all over my parent’s kitchen table. You would have thought he told me Adele tickets were sold out in Nashville again (a very real moment of unadulterated tears and crying, btw). These tears didn’t feel like hormone-induced crying. However, the moment that scared me the most was when my grandmother passed away. At her funeral, I knew I was feeling the sensation of sadness but it wasn’t like it was before when my grandparents passed away, or when Cam’s grandparents passed away. It was like a “theoretical” feeling of sadness. I loved my grandmother deeply, I remember crying over the phone talking to my dad about hospice being called into her hospital room. So why was I not responding to sadness in this moment? During her service, I turned to Cameron and whispered, “I think I’m broken…why am I not crying?”
I became fixated on this idea of death for a few days, thinking back to October when we were walking into the hospital for the first time. Though the chance was small, I remember in the back of my mind knowing that could be the morning I met Jesus face to face. I remember thinking I would never meet Atticus this side of heaven. It was a small chance, but it was there. And that’s exactly what that mom was going through. Then this weekend, I found myself absolutely breaking down at the kitchen sink thinking about all that we’ve been through with Atticus, and that fear we felt of possibly losing our son to Fetal Surgery in October, and how at 5 months out that scar is still raw and real. It was like the date was October 05, 2021 all over again.
When new SB moms who are going through the process of being considered for Fetal Surgery post in our group, your brain immediately goes back to Diagnosis Day, your first clinic visit, your Amniocentesis, your surgery confirmation, the night before, the morning of; the endless needles, body tape, anesthesia, rolling back to the surgery room, the heartbeat of your baby before you go under and the relief of hearing it for the first time post-op…it’s traumatic. I’ve written about this topic many, many times. But that’s simply because trauma and grief are not linear. They are cyclical and they have their own timeline. In the case of this new mom, it took me a few weeks to realize I was even having a trauma response from her post in our group because I knew the path she was about to go down.
It’s embarrassing to admit that I struggle with what Cam, Atticus, and I went through. We’ve been told many times our strength through Atticus’ surgery and birth were incredible and that our faith story was inspiring. At times it feels like as a result of that when I struggle with memories of October to December, and the first few weeks after Atticus was born it’s almost like I’ve failed in my faith or like my faith isn’t big enough. Having a trauma response like the one from the past few weeks makes me feel like my faith isn’t real unless I have an ordeal in which I have no choice but to trust God through it. It makes me embarrassed to go to God and pray about it because in my mind, he’s tired of hearing about it. In my mind, my friends are tired of hearing about it. My family is tired of hearing about it. Cameron is tired of hearing about it. Everyone knows the story and it’s worn off. I just need to move on with my life and get over it.
This is a lie. This is trauma.
This is the part of this journey I haven’t fully figured out just yet, either. I avoided God for a solid week out of embarrassment. This morning, I finally opened my Bible, went to online resources and began looking at Jesus. Here are a few truths I’ve found in God’s response to trauma. The first of which is he knows what it’s like to suffer. I’ve been reading the Gospels lately focusing in on Jesus and his life because if anyone knows what it’s like to be human and struggle, it’s Jesus. Jesus knows suffering; the story of the crucifixion is evident enough. Last week, I read Matthew 27:46 where Jesus is on the cross and asks, “My God, my God, why have you forsaken me?” I am not a trained theologian, but I fully believe God gives us understanding through the Holy Spirit when we’re reading the Bible. When I read verses like these, I think about how God wanted to show us in that moment that Jesus, fully human, would be an example for us in those times where we feel utterly alone with our suffering. Jesus, the perfect example of God’s love for us, was feeling just like I am/was; alone. The good news is, that’s not where the narrative stops. I also found Hebrews 4:15 that says God understands our weaknesses, “for he faced the same testings we did…” and I found Hebrews 2: 17-18 where it talks about Jesus being made like us in all aspects so he can HELP us. It feels like God disappears and leaves you in your pain, but the key words there are feels like. Last week, it felt like God was getting tired of my constant struggling with healing from October to December. It felt like I would never leave this cycle of reliving experiences or being snapped right back into a memory from that time at the sound of a song, a post on social media, or a photo from my phone. But one thing I am working through and standing on is the fact that God knows trauma and pain because, through Jesus, he’s experienced trauma and pain. A quick, read through the first 4 books of the Bible show this. The Hope and Healing Center list out some of the trauma Jesus experienced here on earth:
He was born into unimaginable poverty in a country occupied by a cruel army (Luke 2:1-7)
He narrowly escaped a mass slaughtering of children that was ordered because of His birth (Matthew 2:16)
He was physically assaulted by Satan (Matthew 4:1-11)
Persecuted because of His teachings (Luke 4:28-29)
Thought insane by His family (Mark 3:21)
Betrayed by His own disciple (Mark 14:43-45)
Deserted by His friends (Mark 14:50)
Falsely arrested (Mark 14:56-59)
Publicly humiliated (Mark 15:16-20; Luke 23:8-12)
Beaten to the point of death (Matthew 27:26)
Slowly and painfully publicly executed by crucifixion as a common criminal (Matthew 27:33-39)
My God is not a God who doesn’t understand what we’re going through. My God is also not a God who doesn’t care about my trauma and pain.
God has used my experience with Atticus to reach multiple families across the country. I have spoken with and reached out to so many moms who are in the same situation we were in 5 months ago. Cam and I have been able to offer words of comfort to families because of our story, and we have been able to refer people we’ve never met to resources and proper information to help them make an informed decision for their baby. And yet, it is still okay to grapple with your pain after a tragedy has occurred. This is the season I find myself in; allowing God to heal my heart AND use the pain Satan intended to use as harm to empower and comfort others in Christ. Paul speaks of this in 2 Corinthians 1: 3-7. However, one lesson I am learning is how not to be afraid to come to God with the same pain until you feel okay. I don’t know where we got it in our minds that we just need to “get over it” fast. Y’all, it could take days, weeks, or even months to feel okay again. But when you are working on that pain, God can and will make it easier as the days go by. But one thing I am definitely going to have to work on is recognizing a trauma response and how to put parameters in place to immediately deal with it. It’s not going to be pretty or perfect. I won’t get it right on the first try. I need my circle of influence around me to help recognize it when I can’t see it for myself. And in the future if it’s still a downward spiral, it will be time to reach out for help from someone who is trained in trauma-informed care.
Friend, if you are going through something similar to this today, you are not crazy and you certainly are not alone. If you feel like this is something you need extra help with because what you’re doing isn’t working, reach out to a mental healthcare professional and get those steps in place. We were not designed to live in trauma. We are not designed to carry it alone. Our God knows suffering, yes. But he also knows how to use your suffering for great things, too.
“3 All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. 4 He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. 5 For the more we suffer for Christ, the more God will shower us with his comfort through Christ. 6 Even when we are weighed down with troubles, it is for your comfort and salvation! For when we ourselves are comforted, we will certainly comfort you. Then you can patiently endure the same things we suffer. 7 We are confident that as you share in our sufferings, you will also share in the comfort God gives us.”
2 Corinthians 1: 3-7
