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.
Twelve months. One year. 365 days. It's been that long since my last post. One year ago I wrote about struggling with comparison, with my faith, with my whys and being ready to embrace my journey, embrace where God has me and to claim back my joy. It’s been a long twelve months. It’s not been twelve months of letting go of comparison, of strengthening my faith, of letting go of the whys, of embracing my journey and where God has me or claiming back my joy. Instead, it’s been quite the opposite. I have gone deeper into my struggle of comparison, my faith has been shattered and my whys have only grown with no answers. Instead of joy I have found myself filled with sadness, bitterness and anger. I looked in the mirror a few months ago only to not recognize who I saw looking back at me… the reflection was a stranger.
As I stood staring in the mirror at the stranger in front of me, I broke. Where had I gone? Why I had allowed the last year or more crush me? To break me? Why have I stuffed every negative emotion down? Why have I not spoken with friends about my feelings? Why have I not been honest with my friends, Aaron or myself about how much my heart hurts, about how hard this has been? Why have I not spoken to my friends about my shattered faith? Sought help to repair my faith so I could return to trusting and knowing God has a plan, rather than wondering why I feel forsaken and left behind. Why have I not sat at my computer and written, been transparent, authentic and real about my feelings, my emotions, my journey?
It was here, in this moment, I realized I was afraid; filled with fear. Afraid of being real, authentic and transparent. I was afraid that if people knew what was truly going on inside me they would judge. I had spent the last two years being brave and being strong; what would people thing to know how much this journey hurts? How much it has made me question my faith? What would people think if they knew how weak I truly was during this journey? What if my authenticity offended someone? What if my being real, honest and transparent caused someone to be mad, or judge or feel attacked? I realized in this moment of staring at a stranger in the mirror, that I had become a woman of fear rather than a woman of faith. I allowed fear and to take everything from me over the last almost two years.
The reality is people who know me, who know my heart, know my intent. They know my intent in sharing my journey is not to offend, not to make others questions their actions, but instead to be real about mine; to share mine in hopes that maybe, just maybe, my story, my words can minister to another. Maybe my story ministers to another woman being told similar facts about her pregnancy; or to the mom who was just told her baby has Down Syndrome; or to the woman who is feeling grief from learning her child will be differently abled; or maybe to the family member of a woman in a situation like mine who needs to know how to love and minister to her during this time. My intent is not to offend, but to be real, to heal and to share my journey to honor God and how faithful He has been despite all my questions and anger.
I sit here now, at my computer due to the encouragement of a few people dear to me (thank you Aaron and Marilu). They spoke truth to me. They reminded me my writing is me. My writing is my home, my healing and where I am called. They reminded me to share my journey with you; with those who choose to read; with those who choose to come along and share the journey. So here I am here to be real, authentic and transparent. I am hear to share the good, the bad, the ugly with you. My writing will not be perfect. I will have grammar errors, run on sentences and improper punctuation; but I will also have truth, honesty and my writing will be me. It will be from my heart. It will be real. Some days it will be raw and other days it will be filled with laughter.
It’s as I sit here now, writing I see I was beautifully broken so He can piece me back together… it’s time to surrender my hurt, my whys, my anger, my bitterness and my questions. It’s time to be honest, to be real and not stop worrying what people with think about me if I am honest about this journey. It’s time for me to not live for the approval of those around me, but for His. In the midst of the storm, He has not forgotten me. He has been with me all along. It’s me who ran away and He is waiting with His arms open wide to embrace me; to hold me and tell me I am His, Arrow is His and He is enough for us both.
With that… I will be writing again. I will be open, sharing my journey of healing… because I am in the midst of being put back together; not as I was before, but in a better version of myself. I will never be who I was prior to this journey, but that’s the beauty of it all… this journey, has changed me, and will continue to change me, but if I allow it, this journey will change me for the better. This journey, will open doors I never imagined, bring people to my life I wouldn’t have known otherwise… this journey will refine me, grow me and mature me. This journey will open my eyes and take me on a path I never imagined. This journey will be my life… and a beautiful life it will be.
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!