Edited by Lana King
BE STILL MY GRIEVING HEART Copyright Š 2020 Shannon Potsiadlo
All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, please write to the publisher.
Published by BHC Press Library of Congress Control Number: 2020933874 ISBN: 978-1-64397-127-8 (Hardcover) ISBN: 978-1-64397-128-5 (Softcover) ISBN: 978-1-64397-129-2 (Ebook) For information, write: BHC Press 885 Penniman #5505 Plymouth, MI 48170
Visit the publisher: www.bhcpress.com
table of contents 9
opening Chapter One... 13
Life Limiting Diagnosis Chapter Two... 20
Time to Say Goodbye Chapter Three... 26
Grieving is a Journey Chapter Four... 33
Messages of Love Chapter Five... 39
Remembering Our Baby Chapter Six... 42
Rainbow Baby Chapter Seven... 47
Miscarriage Chapter Eight... 50
Healing with Self-Love Chapter Nine... 54
grieving journal 93
GRIEVING WITH SELF-LOVE
be still my grieving heart
opening
T
he day we held and said goodbye to our baby boy was the saddest day of our lives. We had no idea the impact our baby would have on our lives and on the lives of people around us. I believe no matter how short a time a baby is on earth, he or she has a significant purpose. We are thankful that our baby chose us as parents, even though we only had him for twenty-six weeks of our pregnancy. I believe losing a child is the hardest experience of loss. Grief is an ongoing process that constantly changes and evolves. Going through the grief process made me feel like I was on a horrible emotional roller coaster at times. If you’re reading this book because you have had a miscarriage, or you’ve lost a baby or child, I want to
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express how much I understand your pain. My wish is for healing and love to come to you and your family. When we were told that our pregnancy wasn’t going as we expected, I experienced more worry than I’d ever felt before. When we knew we would be saying goodbye to our son, I was filled with fear and intense sadness. I didn’t know how I was supposed to grieve for the baby I wanted with all my heart and continue to take care of myself and my family. The truth is that I did survive the pain and tragedy. I am still hit by emotions when I least expect them many years later, but my heart has found comfort. The strength to push through our grief is inside all of us. During the grieving process I promised myself that I would do everything I could to find my innate strength when I needed it most. Giving up was not an option. During the journey of losing our baby, my heart broke into a million pieces, but it was healed with more love than we had ever felt before we lost our baby. We were surrounded and supported by love during many different phases of our grief. We felt so much love for our baby in the short time he was with us, and we felt comforted in support from all the family and friends that were thinking of and praying for us. We received the most heartfelt gifts and sincere letters that brought happy and sad tears to my heart. My heart has grown in so many ways I didn’t know possible. This experience has shaken my faith in a good way. I’ve always been on a curious journey to find what I believed was my spiritual or religious path, and I noticed that many grieving moms were given strength by their religion or spiritual practice. I knew I needed all the support I could get, so after losing our baby it became extremely important for me to find my path of faith. When I started meditating and praying more, it created a time for my mind to rest, and it led me to what I call heart consciousness. I feel that love is energy, and it transcends space and time; it is powerful and eternal. I have harmony in my heart knowing my son is connected to me by a frequency of love, but it doesn’t take all the pain away. I still have to grieve for
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his physical loss during our lifetime on earth. My focus on faith has helped me sort through hard questions and fears, comforted my millions of drops of tears, and mended my heart with grace. “Love is space and time measured by the heart.� ~ Marcel Proust ~
When we received the life-threatening diagnosis of our baby in the third trimester of our pregnancy, we had to process heavy emotions while continuing to maintain a routine for our daughter who was two and a half years old at the time. After receiving a sad diagnosis for our baby, we knew there was a long road ahead of us and many decisions that needed to be made. Our maternal and fetal medicine specialist was incredibly kind, compassionate, and professional. He recommended that we connect with a perinatal loss grief counselor for support. I was comforted to learn that there were counselors for this specific type of care. When we were given contact information for a perinatal loss grief counselor that our specialist highly recommended, we didn’t know what a perinatal loss grief counselor was. After learning more, we immediately knew that we could use the support and guidance offered from counseling. Perinatal counselors are specialized to support mothers and fathers who experience miscarriage, stillbirth, fatal diagnoses, or premature birth. The counselors also understand a deeper level of the journey of pain, trauma, and hope after losing a baby. Our counselor helped us through every decision we needed to make and supported us through our grief. Her expertise was a true gift for us and gave us a sense of hope that we would survive the pain of losing a baby. Once we connected with our perinatal loss grief counselor, she became our earth angel. I like to describe the experience of having a counselor as walking on a dark trail and having someone ahead of you carrying a light to show you the way. Her support guided us through all the pain we endured while saying goodbye to our baby. We openly shared our feelings with her and cried. She helped us plan a beau-
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tiful birth to honor our baby boy and suggested ways to remember him while our hearts were healing. We are full of gratitude that we had her guidance when we needed it the most. I can’t imagine how we would have survived this experience without her wisdom and support. I think she is a gift to the world because of how many families she continues to guide and support. Once we knew that our baby wasn’t healthy, I felt that I needed to express my emotions, so I created a journal to write down my feelings and thoughts whenever I needed to. There were times when I felt I was consumed by so much pain I didn’t know how to release it. When I would sit down to write, it somehow relieved the pressure that was building up. Writing became part of my healing journey. I have many years of journal entries in my private blog dedicated to my baby boy. The first year I wrote often (sometimes daily), the second year probably once a week, and by the time the third year came around, I realized I was only writing on my baby’s birthday and holidays. I’ve included many of my journal entries in this book to share an honest picture of what grieving was like for me. Writing has also been a way for me to experience how I’ve healed and grown personally. Over the past few years, my heart has been urging me to share more of my personal experience of pregnancy loss. I knew there would be a time when I was ready to be open, honest, and vulnerable enough to allow others to have a glimpse into something that is so deeply personal. One of the most important insights I received from the experience of infant loss is to listen to my heart more. It’s incredible how strong the human spirit is when we are connected to our heart center. Even though this is a sad experience for me to share and for others to read, I hope it inspires others to find their own personal path to healing.
Chapter One
life limiting diagnosis “Therefore you now have sorrow, but I will see you again, and your heart will rejoice, and no one will take your joy away from you.” ~ John 16:22 ~
I
t was the month of October and we were currently twenty weeks pregnant and looking forward to our first anatomical sonogram. We were hoping to find out the gender and get a sneak peek at this sweet little person that was soon to be entering our lives. Our daughter who was two and a half at the time was overjoyed that she would soon be having a baby brother or sister. I’m one of those people that said I would keep having babies until I had a girl because I wanted a girl so badly. I knew my
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husband would have stopped me at some point, but it was kind of him to laugh when I would tell people that. Then, once we had our girl, I felt just as strongly in my heart about wanting a baby boy, so it was a very special moment when we found out we were having a boy. Our twenty-week appointment, which included the first sonogram, revealed our baby was measuring behind. Our OBGYN asked us to make a follow-up appointment to complete another sonogram in two weeks. Then the sonogram at twenty-two weeks continued to show that our baby was measuring smaller than expected. The OBGYN wanted to refer us to a maternal and fetal medicine specialist to get a more detailed look at our baby’s size, heart, and brain. At this point, I began thinking that something serious could be wrong with our baby. Our sweet nephew was born with hypoplastic left heart syndrome and needed three surgeries as a baby. He is a blessing to our family, and it’s truly a miracle that he is now a healthy kid. I was worried that our baby might have the same heart issue, but I assured myself that if our baby did have a heart defect, there is surgery to save him. It was extremely hard not to worry about everything that could go wrong during the development and growth of our baby. At the time, I was someone that worried about worrying. In between appointments I started feeling the urge to name our baby. I had always loved the name Rowan for a boy, or a girl. I started calling our baby Rowan instead of referring to him as “baby” before even asking if my husband liked it. Surprisingly, my husband loved the name. When we named our daughter, it took nine months to agree on something. I felt like I needed to name him because I didn’t want to call him “baby boy” at all these appointments. Looking back, I’m glad we named him as soon as we could since our time with him was so short. His name became symbolic for us through our journey of infant loss. We also learned later on in the pregnancy that naming our baby was an important part of the grieving process.
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When it was time to drive to our first specialist appointment, my husband and I had encouraging conversations on the way to lift our spirits. We agreed that we needed the expertise of a specialist to ensure that we received the best medical care for our baby. After we checked in for our appointment, we were placed into a private room to complete another anatomical sonogram, this time with a specialist present. There was a look of seriousness on the sonogram technician’s face, and it took an hour to complete the sonogram. The technician took many minutes trying to find and label all the fingers and toes. I remember thinking, “Are they really worried about no fingers and toes?” I wasn’t sure what it meant if there weren’t any fingers or toes. I was extremely thankful that my husband recommended me not to do any internet research before our appointment until we had a clear diagnosis. When we confirmed that our baby had the right amount of cute little fingers and toes, I breathed a deep sigh of relief. The specialist was able to look closer at the heart and brain and noted they both measured smaller than expected. The delayed growth was becoming more pronounced which was not a good sign. When the specialist told us he was more than 50 percent concerned that something was wrong, I felt like my heart was going to fall out of my chest. As our first appointment was coming to an end, we were filled with so many questions. The specialist supported us, and after answering all of our questions with great compassion, we were told that it was time for us to decide how much testing we wanted. We honestly didn’t know how much information we wanted to find out. Completing more testing would provide us with information but there were small risks to our current pregnancy. I felt like I didn’t want any more appointments or testing because of the emotional stress they were causing. This was the first day my heart experienced pain and stress that it had never felt before. I felt like I was losing Rowan before we even had the answers we were searching for.
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The specialist recommended that we complete an amniocentesis if we wanted to continue gathering more information. An amniocentesis is a procedure where a sample of amniotic fluid from around your baby is removed from your uterus. The fluid can be tested for genetic abnormalities, infection, and signs of lung development. We became aware of some devastating chromosomal disorders that we had previously never heard of. My husband and I weren’t sure what we were able to handle as parents if our baby wasn’t born healthy, but we started to ask that question to each other. This is a horrible conversation that a parent never wants to have, but we had to find our way to a decision. After a heartfelt discussion we decided that we needed more information. Rowan was showing evidence that something was wrong, and it did matter to us what type of life he would have. We completed the amniocentesis to rule out any chromosome abnormalities. We would have the first set of results in seven days and the following set in twelve days. The stress we felt waiting for the test results was tenfold that of what I had previously experienced in waiting for previous medical testing for myself. Even our best friends and family were on tenterhooks. Thankfully the chromosome tests came back normal, and we felt happy in that moment in time. When we returned to our specialist for our follow-up appointment, sadly he now noticed something concerning about Rowan’s brain. Things were looking quite scary, but somehow, deep within us, we had hope. We hoped that there would be surgery or care for whatever condition he might have so that we could heal him. We were told that an MRI would give the most accurate detailed look at Rowan’s brain. I highly dislike having MRIs, and I was extremely exhausted from all the appointments and testing. But as I thought it was the only way to get more information to help my son, I was going to get through it. I found my mama strength and scheduled the MRI. Our MRI was performed in the Neonatal Neurology Unit at the Children’s Hospital in Washington, D.C. The hospital offers the
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best treatment for a variety of childhood illnesses, diseases, and life-threatening conditions, so we felt relieved that we were going to receive the best medical care. At the same time, I started losing hope knowing that so many children walk through these hospital doors with serious life-threatening conditions. It made me realize how life changing it must be to have a baby or child who isn’t healthy. It made me think about what our life would look like if we had a baby that wasn’t healthy. It made me sad; I felt so much pain for all the parents I came into contact with. I wanted to cry; I wanted to hug these brave children and their families. Getting the MRI done was extremely tough emotionally but thankfully the radiologist let my husband come into the room with me, so he was close by during the procedure. After the MRI, we were told to wait for the neonatal neurologist to read the report. When the nurse greeted us to discuss the MRI, I felt like she was extremely concerned about ensuring we had privacy. I then realized that she was trying to put us in the “bad news” room… Minutes later my intuition was confirmed to be correct. The neonatal neurologist entered the room and quickly told us something was wrong. She gave Rowan a diagnosis of microcephaly and lissencephaly. We didn’t know anything about either condition but learned that lissencephaly is a rare brain malformation where the brain is smooth and missing the folds that are supposed to occur in a healthy brain. Microcephaly is the term for a baby that has an abnormally small head. Sadly, the doctor told us if Rowan survived through the pregnancy and birth, he would most likely need breathing and feeding tubes in order to keep him alive because of the severity of his condition. When we received the diagnosis, I was terrified. I remember crying harder than I’d ever cried before while looking at the beautiful images of Rowan on the screen that was being used to show the MRI. I kept telling the doctor that Rowan was perfect and asked how anything could be wrong with him. The doctor, nurse, and counselor all tried to console me. It was the first time I had seen my husband
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cry, which made me cry even harder. The nurse asked if I wanted them to take the images down off the screen because I was upset while staring at them, but I demanded that they keep them up. The MRI is much clearer than a sonogram, so it felt like I was looking right at my baby. It was the only thing I could hold onto, even though it hurt to look at him. After calming down, the neonatal neurologist gave us more detailed information. She told us that the hospital was equipped to care for Rowan if he survived the birth but there was no cure or surgery for his condition. I couldn’t believe that there wasn’t anything that could be done to cure our baby. We wanted to save him! We learned that there was a unit in the hospital that had the specialized medical care he would need if we wanted to birth him at the hospital and support his life. We were also able to make the decision to say goodbye early within a certain time frame because of the life-threatening medical diagnosis. She told us that whatever we decided, “It was a decision made out of love.” I will never forget those words she shared with me because they became so true for us during our decision-making process. I always remember those words when I think back to this moment in time and how lost I was. We were now faced with the worst decision we’d ever had to make. I remember thinking, “This is our baby! We want our baby! We love our baby; I need more time with my baby!” I felt like the situation was too painful to be real; it was like I was stuck in a bad dream. At the time, I feared I would be judged by others, regardless of whether we said goodbye or tried to keep him alive. In our grief counseling sessions, I learned how to let go of the fear of judgement. Everyone has their own experiences, health concerns, and beliefs that I personally respect. Instead of worrying, I prayed that we would receive the same respect that I offer others for whatever decision we made. I was also reassured by the counselor that we had the right to share as much or little as we wanted with our family and
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friends. If we did share openly with others, they would know the love we had in our hearts and how hard the decision was. My husband and I decided that we could not emotionally handle watching our child suffer or constantly live at a hospital. I wanted to carry Rowan longer so that we had more time together but there were too many risks to my own health and future pregnancies. We knew that we would have Rowan for a short time leading up to saying goodbye, but we didn’t know when our time with him would end. We started using the term “saying goodbye early” when we spoke about our pregnancy ending. The medical community uses the term “medical interruption” for situations like ours, but we felt the term “saying goodbye early” was gentler on our hearts. I learned from our amazing perinatal loss support group that everyone makes different choices when faced with challenges like the one we were in. I think the most important thing is that you know your options, so that you can make the best decision for your family. I’m proud that other families honored what was best for their hearts, and I’m proud that we honored what was in our hearts. It’s an intimate, personal decision that only the mother and father of the child can make. Once my husband and I made this decision, our time together became even more precious and important. We spent as much time as we could snuggling and giving baby loving belly rubs. We continued to meet with our counselor for support and to create a birth plan to honor our baby. Looking back on this experience, I never imagined that we would have to make such a difficult decision. I would often wish that we never had to say goodbye to our boy, but I had to accept that my thoughts couldn’t change the outcome. I also thought, at times, that it would have been less painful to lose him naturally, but then I realized that it was going to hurt really bad either way. I believe that we did the best we could with the information we had at the time. The words that continue to bring me peace are, “We suffered so that our baby didn’t have to.”
about the author Shannon Potsiadlo graduated from the University of Maryland with a Bachelor’s of Arts in Dance, and she has been gracefully dancing her way through most of life ever since. Shannon is fond of journaling, bird watching, and boating. She lives in Austin, Texas with her musical husband and two fairy princess daughters. She has a passion for holistic healing and loves spending time with her family and friends. She enjoys sharing her journey with other beautiful mothers and connecting with her readers. Visit her website at www.bestillmygrievingheart.com and her publisher’s website at www.bhcpress.com