When I was twenty weeks pregnant, I was told both of my identical twin girls were going to die. They were very sick, caused by a disease of the placenta that happens with identical twins sharing a placenta. This disease is called Twin to Twin Transfusion Syndrome. So, after the first diagnosis of imminent death, the fact that both of my girls were born alive at thirty weeks was incredible. The TTTS wreaked havoc on Kathryn’s system, causing her to have a massive internal build up of fluids that would eventually cause her to go into heart failure. Her lungs were also never able to grow to support her fluid filled body. After fifty two hours, her little body gave up the fight.
Our other daughter should not have made it either. She was severely growth restricted and had a lot of hurdles herself in the first few weeks of life. However, her issues were not nearly as severe as Kathryn’s and after twelve weeks in the NICU, she came home. Now she is a healthy toddler.
Much how Sean’s experience motivated him to create “Return to Zero” to advance the conversation about stillbirth, infant death, and miscarriage, my journey has transformed me into a very loud and proud advocate. Now I am a voice for better advanced fetal and maternal care, maternal health and newborn health issues, research into the causes of prematurity and infant death, and of course, supporting the grieving parents.
Those two days with our daughter were a miraculous gift, yet, the grief of losing a baby is indescribable to most. There is no magic solution to making someone feel “better” from the spirit-crushing pain of losing her baby. I know this all too well as someone who lost a two-day-old infant. At the time, it seemed as if all I was capable of feeling was anger. I hated the OBs, the maternal fetal managers, the staff at the NICU, and myself. I felt like we had given up on my daughter and had not explored all options that could have treated her. I also despised the look of pity and the awkward conversations that followed our loss.
I began blogging to work through the grief and the immense emotional roller coaster I rode every day. Sad, depressed, angry, happy, grateful, jealous…so many emotions consumed me. Writing helped. The more I wrote, the more feedback I started to get from people who had also lost a twin or a baby or a child, and I realized that by sharing my story and my feelings, I was helping others.
One of the common themes in the feedback I received from people was that they felt alone; they were glad to know that there were others who felt the same pain and issues. But they felt as if our society did not allow them to grieve out loud, certainly past a certain arbitrary timeframe. I had not understood the pain of losing a child before, but I now knew that mothers want to be able to talk about their children, whether they are living or not. It’s disheartening to know that parents struggle so greatly through this and feel so alone in their pain.
“Return to Zero” is going to do so much to change that situation. I remember when I first heard about “Return to Zero.” When my writing coach, Brooke Warner, learned about the death of my daughter Kathryn, she asked me if I had heard about the Return to Zero movement. Brooke told me that Sean and his team were looking for community leaders to promote this movie about a cause that is near and dear to my own heart.
I followed her suggestion and looked into it. I immediately knew this was the type of project I wanted to support. I could not agree more with the concept of breaking the silence. Too many parents feel they are unable to talk to anyone and share their feelings after experiencing the immense heartbreak of losing a child.
As I learned more about Sean, I realized he was also the perfect fit for the project I had just begun working on.
I had begun compiling a survival guide for grieving mothers. As a grieving mother myself, I recognized that there were some things that really helped me along the way. And plenty of other situations that I wish I had been better prepared for. I had already written several blog posts about the things that you should (and should not) say to grieving parents and tips on how friends and family could help a grieving mother. The next logical step was to write about survival tips for the mother herself. The project was catapulted forward when a dear friend of mine lost her full-term baby. At the funeral, several of us who had had infant and late term losses were discussing the fact that we wish we could get our friend to the place that we were now. Not over it, but a place of acceptance, a place that was not so dark. A place we could breathe and live again. And so I began to seek out contributors to help me build a well rounded book to provide tips and our best advice to navigate through the worst of our pain.
The end result: Sunshine After the Storm: A Survival Guide for the Grieving Mother. The book includes stories and insights from over thirty contributors. We tried our best to cover all scenarios from early loss, multiple loss, to the loss of a child as old as twelve years old. We write about the kind things that people did for us, the stupid things some people said, the overwhelming grief, the recovery process, late term loss, stillbirth and infant loss, and the pain of having to make the decision to terminate a pregnancy. And finally, the “after.” The time when we began to realize that we could live again, even smile again and find happiness.
We include a chapter on grieving fathers and the difficulties in marriages caused by the different grief process between men and women. Sean Hanish even contributed to this chapter. As a leading voice for grieving fathers, it was important to me to have his input, along with three other fathers who graciously shared their grieving process.
When organizing the book, we thought very carefully about the most important advice and information we wanted to share with others walking this journey with us. We provide twenty three “tips” to help grieving parents survive the aftermath of loss. Each of these is supported by contributors’ personal experiences. All of them have the goal of letting you, the grieving parent, find a place where others “get” you.
The survival “tips” include:
Survival Tip #1 You are not alone. Find other grieving mothers to support you or allow them to find you.
Survival Tip #2 Grieve according to your own needs and your own process.
Survival Tip #6 Believe that you have the right to your feelings, no matter how small your baby was. Your loss counts.Survival Tip #8 Know that infertility is a bitch. Sometimes you get a happy ending, and sometimes you have to pursue a different happy ending.
And so forth…
I believe that Sunshine After the Storm is a perfect companion to the Return to Zero anthology coming out soon. One is a collection of stories and poems shared by parents who have been down this path; the other includes stories with the intent of walking with the parents through their own journey.
Sunshine After the Storm is also meant to be a voice for those who have not found their own yet, by providing tips and suggestions on how to ask others to help you. It is also a good resource for those who work in the bereavement community and for those who want to better support a loved one facing this situation.
A recent review said the following: “For those who have not experienced the grief of losing a child, the book provides an insight into the world that you beg God will never involve your family. For those in the midst of loss at whatever stage, the book provides comfort in knowing that you are not alone. The book is recommended for family and friends of the grieving (one copy for you, one copy as a gift), for clergy, counselors and for public libraries of all sizes. College and university libraries supporting psychology programs should consider the title as a course reserve.”
It is our hope that grieving parents will be able to use this book to get from Zero to Sunshine, happier days, once again.
Sunshine After the Storm can be found on Amazon in both kindle and print versions here.
Please visit our website at http://sunshineafterstorm.us for more information and for a full list of contributors.
~Alexa Bigwarfe is the mother of four beautiful children, three on earth and one in Heaven. She blogs as “Kat Biggie” at “No Holding Back” which was started primarily as an outlet for her grief after the loss of one of her twin daughters. Alexa’s goal is to bring more awareness to Twin to Twin Transfusion Syndrome (TTTS) and provide hope to other grieving parents. Alexa is a wife, mother, writer, advocate, and sometimes political activist. She recently co-authored and published a book for grieving mothers entitled Sunshine After the Storm: A Survival Guide for the Grieving Mother.