Milestones can bring a lot of emotions for parents that have gone through trauma with their babies. For me, Emma’s birthday is particularly difficult. Her life is full of celebrations and overcoming obstacles, but when I think back to the months leading up to her birth, the day we welcomed her into this world, and the time she spent in the NICU, the memories overwhelm me. Of course I was overjoyed to add another precious girl to our family, but I had many moments that the fear of losing her just crippled me. This journey with Emma has transformed my life in so many ways. I feel led to continue to be open and share my story, in hopes that it will bring hope and encouragement to anyone that may walk such a difficult road. There are thousands of people fighting for their child's life at this very moment. Please know that you don’t have to walk alone.
1. I remember everything.
There are quite a few days along this journey that are unforgettable. Some of the days were very traumatic for any momma to experience when their child’s life is at stake. This resulted in PTSD for me, which is pretty common for NICU mommies. I will never forget the day of Emma’s hydrops diagnosis and all the crying and confusion that followed. Coming to terms with the fact that we may never get to meet our daughter (alive) is something no parent should ever have to face. I will never forget the day I had fetal surgery. This turned out to be a life-saver. Including the moment the doctor performing the surgery told Justin "I was a millimeter away from her heart, and if I would've pierced her heart, she would have died instantly." Praise God for steady hands. Emma and I both still have our scars from the surgery, and we refer to them our “battle scars”. I will never forget the day Emma was born, the joyous moment I heard her first cry, and the heartbreak that followed because she was immediately taken to the NICU. I wasn’t allowed to visit her because I just had major surgery (minor detail) and needed to recover. I will never forget laying in the recovery room alone listening to the new mom on the other side of the curtain nurse her newborn baby for the first time while my arms were empty and tears of jealousy ran down my cheeks. I will never forget the first time I held Emma at 5 days old and how tiny and fragile she seemed. I will never forget walking out of the hospital after I had been discharged. I had to leave my daughter there for strangers to care for her. I couldn’t stop crying which resulted in unbelievable pain from my C-section that I could barely walk. It was excruciating, and probably the worst moment of my entire life. I knew Emma needed to be in the NICU, but it simply wasn’t fair that I had to leave her. I also remember walking out of the hospital at the same time as another couple who was leaving with their new baby. My heart was breaking, and their hearts were full. Watching them was like a knife through my heart. I will never forget the day Emma almost died in the NICU. She had group B strep, a blood infection, and the doctors believed that because she was so sick, she may have developed spinal meningitis. Justin was working, and I couldn’t figure out why Emma’s doctor kept asking me if Justin could come to the hospital or if there was anyone else I could call, because I shouldn’t be alone. Then he told me the news. If Emma has meningitis, she most likely won’t survive. If she does survive, she will be severely handicapped for the rest of her life. My world came crashing down. This was it. The life-changer. I called Justin and he raced to the hospital. My mom brought Laney too, and we sat in the Ronald McDonald family room and prayed like we’ve never prayed before. After the doctor was finished with the spinal tap, he came and told us that Emma’s spinal fluid was clear and he was confident there was no meningitis. I will never forget that moment either. I’m pretty sure I jumped up and hugged him. We praised God for His continued faithfulness and healing hand over our girl. I will never forget the day we brought Emma home. Justin and I both cried when we left the hospital as a family of four. Life could finally begin again for our family.
2. I changed. A lot.
I recently went through counseling to help sort out the emotions I still feel (3 years later) when I reflect on Emma’s journey. I found an amazing therapist that specializes in reproductive trauma, which is anything in the pregnancy or birth process that didn’t go as planned. Talking to someone who understood and has been through similar traumas was life-changing for me. She validated my feelings, she explained why I have these feelings, and she helped me get started on the road to becoming myself again. I had been diagnosed with depression and anxiety a few months after bringing Emma home, but the medicine only seemed to numb the emotions, and I never found anything that really helped. I felt like I was living in a fog. I didn’t want to bury feelings, I wanted to dig them up, sort through them, and move forward. Counseling was a painful process that opened wounds and raised my anxiety, but it was worth it to make the step towards healing. I will probably always cry when I think about everything Emma has been through. Not always tears of sadness, but tears of pride, joy, and amazement at how God healed her. Many people described me as strong during this journey with Emma, though I never truly felt strong. It was God’s strength and power shining through. I used to feel strong in different ways; confidence, decisive, bold, accomplished, etc., but this is a different definition of strength. Now, I feel strong when I embrace my weaknesses and imperfections. I feel strong when I realize I don’t need to be a perfect wife, mom, or friend and I can call on God for guidance. I feel strong when my best friend tells me I don’t have to go through this alone, and that she is here for me in whatever I need. I feel strong when my husband tells me that he loves me and that he supports me in this journey to be myself again. One thing I do believe is that it takes a very strong person to seek help. I truly believe counseling is great for anybody, and it is probably the best advice I can give, along with prayer.
3. I stopped caring.
My therapist told me she believed I went into shock after Emma’s diagnosis, and I stopped caring for myself and put all of my energy into her. Navigating through my new world of depression, anxiety, and PTSD has been nothing short of challenging. I didn’t understand mental illness before my own diagnosis, and I was embarrassed to talk about it because I thought it was something I should be able to control. I despised the fact that my thoughts, words, and actions weren’t always in my control, and feared that if I accepted this then I would be accused of using it as a crutch. It took me a while to tell anybody other than my husband about my mental illness, but once I realized it was nothing to be ashamed of, I started opening up about it. We’re all imperfect, that’s why we need Jesus. There is so much beauty in imperfections. My imperfections tell a story of doubt, fear, grace, mercy, and hope. I realized there was nothing appealing about me suffering alone on the inside while trying to appear “normal” to everyone around me. I now understand that I am loved for who I am inside. One piece of advice for those that have loved ones suffering from mental illness; give them grace. God gives us all grace, especially when we don’t deserve it. Sometimes we just have bad days. We are our own worst critics. We may not deserve it, but we need grace. I am grateful for the circle of people that love me unconditionally and have given me undeserved grace through this journey. Not only do I hope to receive grace, I try to give it as well. One of my most favorite “takeaways” from our church is to believe the best in others. When there is a gap between what I expected and what I experienced, I will believe the best. If I need to fill that gap, I will come to you and ask for truth. Can we all try this a little more? Grace is big. It can change the world. Little things don't matter. Once my child’s life was at stake, I saw the bigger picture. I don’t care about petty things. I don’t have time for it. There are more important things in life than getting offended about meaningless drama. My daughter almost died, y’all. That’s big. But she’s alive. God saved her. That’s bigger. This journey gave me a new outlook on life. I value my relationships so much more. More than letting little things offend me. More than actually believing someone close to me would intentionally do something to hurt me. More than getting my feelings hurt, for example, when someone talks about how happy they are that their baby is healthy. Does it sting a little? Absolutely. But I believe more than anything that it isn’t meant to be hurtful. I believe the best. People are allowed to be happy about their healthy babies, and I’m allowed to be sad about the times that mine wasn’t healthy. I would never wish the pain that I experienced on any parent. I hate that I had to watch my baby suffer. I hate it. If I could’ve taken her place I would have in a heartbeat. Sound familiar? God willingly sacrificed his own son, his child, to save us. There is so much beauty in that. I can’t comprehend the love God has for us to do such a thing. I begged and pleaded with God to save my child, all while knowing that he sacrificed His own. He loves us, so very much. We simply don’t deserve it. Can we all try to love each other more anyway? Even when I feel unlovable, I know the people in my inner circle will love me, believe the best in me, and come to me when there is confusion. I love that my relationships are thriving because of this concept. I love that my husband has seen all of my ugly moments and still loves me, believes the best in me, and encourages me to do the same for others when I have doubts. It’s a beautiful thing, y’all, and the world could use a little more of it.
4. I step out of my comfort zone.
If you know me well enough, you know I’m pretty reserved. I am pretty shy, and not great at reaching out to others. That changed. I have found that every time God wants to use my story, it’s way out of my comfort zone. But that’s okay. It’s all for His glory. Every moment, good or bad, He was present. In my darkest moments, He was the only one there. I wish somebody who had been through a similar experience had reached out to me to tell me what I was feeling was normal, and that I didn’t have to be alone. But there was nobody there. Nobody knew how much I was struggling. Nobody knew that I cried every moment I was alone without somebody there to distract me. Nobody knew. I suffered silently for 3 years. Isolation is pretty common for NICU mommies. Unfortunately, we just don’t know how to navigate through the hurricane of emotions thrown our way, so we hold it in, and try to focus on our babies. I wish I would’ve had someone, but I didn’t. Thankfully, after counseling, I realized that one of my purposes of going through this journey with Emma is to be that person to someone else. I want to be there to walk alongside another mommy who is struggling just like I did. I want everybody to know that miracles still exist. I don’t want anybody to feel alone. I want everybody to have hope. After all, why would we even keep fighting if there is no hope? I am part of a hydrops support group on Facebook, and I love hearing stories and sharing ours to bring a little hope. These families are in the middle of their storm. Most of us know somebody going through a storm. Lean into them, don’t turn away. You don’t need to have all the right words, just be present.
5. I’m grateful.
Although memories full of fear seem to take over when I think about the 13 months of my life spent worrying about Emma’s future, I can push the fear aside and find the joy that my oldest daughter Laney brought to me. Every moment I spent with her was one less moment that I spent in my bed crying alone. She was only 9 months old when Emma was diagnosed with hydrops, so of course she didn’t understand. It didn’t matter. All she knew was that my growing belly was named Emma and she loved hugging and talking to her little sister. She didn’t need to know all the scary things; she just wanted to love on her sister. Laney was an amazing baby. She was always happy, never cried, easy to care for, and could make me smile and laugh at any given moment. She is the definition of joy. Laney truly saved me through the most difficult days. I am so grateful for her. I am so grateful for Emma. I am so grateful for Justin and how much our marriage has grown through this journey. I am grateful for my inner circle. I am grateful for this life I get to live. I seriously love my life. I am grateful for God’s constant love and presence in my life.