As I begin to be authentic and honest about this journey, I feel I need to share the journey from where I left off. I wrote often during my pregnancy. I shared frequently about the medical appointments, the diagnosis, the possible heart issues and how our family was processing it all. I shared her delivery and even wrote that I would share our NICU journey, only to not actually share. Initially I thought I would share our NICU journey through a slideshow of pictures; thinking that would tell our story. It’s only now, as I have decided to be honest, to share our story and all the feelings that are part of it, I realize I cannot start from the present, but I have to start from the beginning, and have to write it. A slideshow of pictures doesn’t clearly articulate the emotions, good and bad, of the journey. I also realized in order for me to fully heal, to accept my feelings, I have to start from the beginning; picking up where I had left off... I have to share our NICU journey. Sharing our NICU journey won’t be in one post chronologically sharing the events. It also won’t be in several post chronologically sharing the events. Instead, it will be several posts, randomly ordered, but sharing our journey, the beauty in the midst of the hardship.
Ten hours following Arrow’s birth, Aaron put me in a wheelchair, pushed me down the hospital hallway to the elevator and up two floors to the NICU. He helped me lean from my wheelchair over the sink to wash my hands and then wheeled me down the hall to Arrow’s room, pushing my wheelchair next to Arrow’s bed. I sat in my wheelchair, in awe, as I stared at my beautiful, little daughter, with tubes attached to her, thankful she made it safely through delivery and wondering what the next few days would hold. I stared at her questioning if her heart would need surgery; would I have to hand her over to a doctor for them to fix her heart? As I sat staring at Arrow, the nurse walked over to Aaron and me, asking if I would like to hold her. The nurse prepared the recliner for me, Aaron helped me from my wheelchair to the recliner and as I sat back, the nurse picked Arrow up from her bed, helping place her on my chest, inside my hospital gown. It was in the moment my whole world was right. After ten hours of giving birth to my daughter and seeing her swaddled in a blanket with a pink hat on, I finally was able to hold her, to touch her, to feel her against my skin, to touch her soft brown hair, and stare at her beautiful face and little hands. This moment is forever etched into my heart for it was in this moment as I held Arrow that I knew without a doubt my life was never going to be the same; that I was never going to be the same mom, woman and person as I was before.
I could have held her forever inside my shirt against my skin. Unfortunately, I was only allowed to hold Arrow for a short period of time, as the nurse needed to place her back in her bed, making certain all her monitors were hooked up correctly and allowing her to rest. Handing Arrow back to the nurse, seeing her placed into her bed and having to be wheeled back to my postpartum recovery room was the beginning of many of the hardest moments I had ever experienced. I returned to my hospital room, surrounded by moms with their babies, to sit in my empty room with my baby two floors away from me. While I was filled with joy over the birth of my daughter, my heart was beginning to feel the first of many moments of grief I would experience along this journey. I wanted to be sitting in my hospital room with Aaron and by baby, staring out at the city, talking about how beautiful our baby girl was. I wanted to be holding my daughter, trying to nurse her rather than sitting in my room, talking with Aaron about our beautiful daughter while I tried to pump instead.
I spent 26 days holding my daughter every three hours at feeding times. I lived my days in three hours increments. Every three hours during the day, I could change her diaper, I could touch her, hold her and help the nurses place breast milk in her NG tube. Following her feedings, I was allowed to hold her for a few extra moments, then I would have to place her back in her bed. Once I placed her in her bed, I would walk to the mother’s room, get situated and pump. As much as I hated pumping because I would rather be holding my baby, having her nurse, rather than having a machine attached to me, I would pump with great joy because for me it was one area I could feel in control of what I could provide my daughter, as I felt out of control in every other way regarding my daughter.
I had no control over when I could hold her, feed her, change her and even take her home. I had no control over what her health would be like; if she would need heart surgery; if she would have any typical health issues associated with Down Syndrome. I had never felt more inferior as a mom and yet I needed to be strong. I needed to show strength for my kids, for Aaron, for family members and I needed to be strong for Arrow. Arrow needed me to continue to show up, not just physically but emotionally. She needed me to stay strong in order to advocate for her, to ensure she was getting the best care, to ensure the nurses knew she didn’t cry, to ensure they didn’t force incorrectly sized NG tubes down her nose. She needed me to be her voice and her strength while she fought to get physically stronger, while she fought to eat in order to get home to her family. It was here, through the NICU journey where I began to feel grief but learned that in order to keep moving forward, I needed to just keep putting one foot in front of the other. I learned that in order to show up for Arrow and the rest of my family in the way they needed me during this journey, I needed to continue being strong. I couldn’t sit in my grief. I couldn’t feel the hurt, the pain, the what if’s, the whys.
Looking back I can see no one asked me to be silent with my grief, my hurt, my pain, my what if’s or my whys. No one told me that in order to be strong I had to hide my grief. No one told me that if I shared the tears that I wasn’t being strong; or that showing my hurt and questions would make me less of an advocate for my daughter and my family. Truth is, I told myself that. I told myself that in order to be strong I had to hide the emotions that could potentially cause me to look weak; that could cause me to be judged; that could possibly cause people to question the love I have my for daughter. Looking back at the NICU journey I realize the moments Arrow was the strongest, the moments Arrow grew the most with her feeding pathways, were the days that I let go, the days I allowed the tears to fall as I held her and allowed myself to just be with her, feeling all the feelings… feeling the fear, the worries, the concerns, the pain and most of all the LOVE.
The truth is, as much as I have grief, worries, doubts and questions, I have more LOVE than any of that. It’s my LOVE for her that causes me to speak out, to share our journey, to advocate and have a voice… it’s because of my LOVE for her that I will SHOUT HER WORTH by sharing in authenticity; by sharing so others will know the feelings are natural, but the journey is worth every moment, worth every tear, every heartache, every delayed milestone and just worth every single moment. It’s because I LOVE her I am learning strength doesn’t mean not being real with emotions, but instead true strength comes from laying it all down at His feet; sitting in full surrender and complete gratitude for the gift of this journey, for the gift of my beautiful Arrow. I am learning that LOVE is a strength all of its own; with the power to accomplish more than I could ever imagine.
I'm a single mom of four radiant kids who believes in relationship with Jesus over religion. I'm trying not to battle with fear anymore - instead I am choosing to follow what God has called me to do. With that you'll find me here, trying to be brave, with the goal of being authentic and honest about God, single parenting and the beauty in the mess of my joyful chaos. It's sure to be a journey... and I am blessed to share it with you!