Loss and Gain.

Sometimes I feel guilty about sharing my experience with Atticus.

Telling about his story is a way for my brain and heart to process in a healthy, safe way. Lately, I’ve been focused a lot on processing some of the more emotionally exhausting moments from September to December. It’s amazing what the brain can do to protect you when you need it. In a roundabout way, it feels as though my heart and mind are going through a type of grief cycle with things we missed out on with this pregnancy. It’s like my brain has decided “You’re safe now, let’s process.” It makes me feel guilty, too. I have this amazing child who is overcoming obstacles left and right. My relationship with God is the strongest and most in-sync it’s ever been. My heart should be satisfied, right?

I often think back to the times Cameron and I were in the hospital together and really miss those moments. The week of our fetal surgery a moment in time sticks out to me the most. It was a really, really cold night for October. Like so cold that we could even feel it through the window of my room. We had just moved from the ICU-like room in Labor and Delivery to a maternal special care room. Mom just left from her nightly visit, and we were watching the Halloween Baking Championship on television. I was in a chair for once, not the hospital bed. I was also eating real snacks for a chance and felt sort of normal for the first time in 6 days. Cameron all of a sudden got really excited while he was looking out the window and started bouncing up and down like a little kid on his toes. I was confused at first because we didn’t necessarily have a “room with a view” type thing going on. We were in a corner room away from everything with nothing but construction and the occasional sound of the helicopter landing above us. I got up super slowly from the chair and shuffled to the window, hunched over because my incision was hurting. He simply pointed and said, “Look at ‘em!” He was pointing to the babies in their beds in the NICU, their lights and warmers turned on. We lovingly referred to them as the baby “microwaves” from that point on. It was carefree and light, just a husband and wife admiring other babies; excited for their own.

Another moment that I reflect on a lot was the second hospital stay in December when we weren’t sure if Atticus was going to be delivered early or not. We had been transferred to another room on Labor and Delivery, this time a much bigger room with lots of windows. You could tell at some point it was a double room two people shared that was turned into a suite of sorts. We had views of both Vanderbilt’s campus and the hospital area. It was sunny and bright, you could see so much of downtown Nashville in the distance. At that point in our stay, I was so sad to be missing Christmas activities with my mom and friends in our Donelson neighborhood. Mom and Amanda packed a bunch of Christmas decorations that Cameron and I hung everywhere, trying to make our stay a little more joyful. Our nurses and care staff especially loved the Christmas lights we hung on the windows. I remember I made Cameron keep them on each night until I fell asleep. In this particular moment, nothing really exceptional was happening. I had finished my IV drip for the day, there were some snacks on my hospital tray. My tablet, Bible, and notebook were sitting next to me, Cameron was reading Harry Potter. I was reading Jesus and John Wayne by Kristen Kobes Du Mez. I don’t even remember what was playing on the television in the background, but I remember just watching Cameron read and being so thankful for the peace among the uncertainty of an imminent delivery. It was quiet. We weren’t thinking about Spina Bifida, fetal surgery, early deliveries, C-sections, complications, or other procedures. We weren’t worried about my high blood pressure or low amniotic fluid levels. We were just together, enjoying the moment while our son kicked around inside of me.

I think that’s where a lot of my feelings of mourning come from.

The happy moments that I miss the most from this pregnancy were moments spent in a hospital room, nurses a button call away, no fear or worry about if my son would be alive that day or not. Every few hours I was getting a fetal Doppler to check his heartbeat. Every three days we were in the clinic watching him kick around on the ultrasound. My MFM was a text message away, and we could call our nurse from the Fetal Center directly on her cell phone if anything felt “off.” Totally not how I thought it would be. Sometimes I think I mourn the idea of the typical happy moments of a first pregnancy were almost kind of stolen from Cameron and me. But then that nagging thought of you should just be thankful your son is alive and healthy comes creeping in, and the mental battle begins. Can I grieve and be thankful at the same time? Can I be praising God for all the great works he did for my son while also being sad about what we had to go through to get there? Are we allowed to be sad and grateful at the same time?

We are allowed to mourn when things we wanted to happen didn’t get to come true and still be thankful for God’s provision.

I know I’ve written about this in a blog before, but I still remember the unprecedented shift in my pregnancy when I found out about Atticus’ diagnosis. Often, I will scroll back in my photos from the months leading up to September 10th and compare the look of joy on our faces to photos after that day. It’s amazing to me how quickly a smile can change when it’s received life-altering news. I go back to the days in Chattanooga at a competition looking at the smile on my face knowing I was carrying a baby no one else knew about except Cameron and my friend Katie. It was like a little secret that was just ours. The excitement, the joy, the happiness, the curiosity. It was palpable in pictures. That smile was filled with wondering what we were having, even though I knew fully well it was a boy from the get-go. I look back at the face of exhaustion from first trimester morning sickness that turned into all day sickness, still smiling because I knew the joy that was coming because of it. I would pop a zofran and go on about my business. I look back at pictures that were taken after doctor’s visits with Jon where all three of us just sat in the excitement of mine and Cameron’s first child. I look back and remember that girl before the diagnosis and how the fears she felt were just simple fears; am I going to be a good mom? Will we be good parents? What is parenthood going to look like? Will he be breast or bottle fed? Looking at those pictures makes me feel a mourning to its fullest extent. I know that girl doesn’t really exist anymore; at least not in that carefree form.

I miss those days so much. I miss that girl. I miss her a lot.

Looking through my photos from September 10th onward is a strange mix of sadness, anxiety, and happiness all wrapped up into one. In every picture, I can immediately remember what that moment held; the emotions, the happenings around us. Everything down to the smell of the hospital and exam rooms. The days of fetal surgery are especially hard. It’s almost like a different person had control of my camera. In the days before Diagnosis Day, there were numerous pictures of us smiling, taking pictures of nursery decorations, baby clothes, and our numerous animals. My reels were filled with our dogs and the activities that made us the happiest. After Diagnosis Day, it was like my brain wanted to stop capturing the world around me for a bit. There are pictures of my incision that I sent to Cameron when we were separated so he could see how it was healing. I have pictures of my growing belly, yes. But I remember when I would send them to Cameron it was always describing the pain and discomfort being felt from surgery and my son growing and pressing on that scar. There are many pictures of sonograms where we would laugh at how huge our boy was. But those were always after appointments with our doctor where we were discussing ventricle sizes and whether there was a visible change in his mobility. There’s a screenshot of alternative methods to get to the hospital in case the highway was shut down near us and I went into labor (a very real possibility living so close to downtown). I wasn’t allowed to labor on my incisions, so I always made sure to have that picture saved and accessible. There are pictures of bottles being washed and sanitized a few months before Atticus was due. Our small but beautiful Christmas tree. Pictures of my mom pushing me around in a wheelchair in stores because I was not allowed to walk long distances. But one thing I’ve noticed that changed in a big way was my smile. It wasn’t and isn’t like the girl before Diagnosis Day.

I’ve had to accept the fact that parts of my pregnancy were forced to be different than what I expected. And though they have made me a much better, stronger person, they’ve come with their own parts that are filled with sadness. There were days I had to accept the fear of not knowing what would happen during clinic days. Mothers are excited to have an ultrasound taken during appointments. And while I was excited, yes, I was also filled with a low-key sense of fear most of the time. I think that’s why I miss the moments with Cameron in the hospital because there I wasn’t afraid. Not as much, at least.

Normally my blog posts have some kind of inspiration or theme to them with verses spread throughout the writing. Today’s writing, I think, is simply to say it’s okay to mourn when things play out in a different way than what you were expecting. Grief has a funny way of popping up when you least expect it. It’s taken me returning home with Atticus to understand that’s exactly what I’ve been feeling since September 10th: grief. Grieving my first and possibly only pregnancy had complications, and all the traumatic days that came with it. Grieving my son’s diagnosis even though I am so, so thankful for it. Grieving the loss of who I was before Diagnosis Day.

So what is the point in all of this, you ask?

Be kind with yourself, friend.

I don’t know your story or what you are going through, but if there is one thing I have learned through this process it’s that taking time to allow yourself to feel without expectation is normal and good. It’s human, it’s healing, it’s allowed. But what you do with yourself after that moment has passed is just as important as allowing yourself the moment in the first place. I told Cameron this afternoon I have to wake up each day and choose to be joyful. Some days are easier than others, sure. Some days I fail and give into the sadness. Some days, I give myself a moment to grieve the life we had before Diagnosis Day. There are some days I wish I could take Atticus’ Spina Bifida and carry it for him. I sometimes get sad about his future. But then I look at his face, those beautiful blue eyes, his sweet gummy smile and I’m reminded that his future is protected by a God who loves him and chose him to be this amazing warrior of a child with an awesome story. But those brief moments of sadness? They are allowed.

I guess I just want to encourage you today to not feel guilty about being human. Feel what you’re feeling, process it, take as much time as you need. But then get to a point where you can look that grief eye-to-eye and choose to live each day with joy knowing you are loved and cared for by an amazing God. Not every day is going to be as good as the last, but that’s the beauty of a new morning. You get a chance to start fresh and try again.