Today it has been ten months since Molly was born and went to Heaven. Reflecting on what was happening in mid-February last year, it is hard to believe how much time has passed since that critical and uncertain stage of our pregnancy, when we were doing everything we could to give our baby girl the best chance at life.
As in previous months on the 17th, I am taking time today to honor the memory of our daughter and Sean’s baby sister. For many months I have shared with you about special things that have helped our family to continue to remember and feel connected to our baby girl. This month I am going to tell you about some of the books that we read both during and after our pregnancy with Molly that have helped our family to cope, grieve and heal.
The first book that I found out about and read towards the end of our pregnancy with Molly was Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life by Amy Kubelbeck. It is about Amy’s experience finding out while she pregnant with her son Gabriel that he had hypoplastic left heart syndrome (HLHS). The true story takes you through what it was like to learn of Gabriel’s diagnosis when Amy was 5 1/2 months pregnant, the decisions she and her husband had to make from there on behalf of their baby boy, waiting for their son to be born, saying hello to him and not long after having to say goodbye.
HLHS is a more common congenital heart defect then the rare and severe combination that our Molly had. There are more options to treat it and better chances for babies diagnosed with it to survive after birth. However, even though Gabriel and Molly’s diagnoses and prognoses weren’t exactly the same, there was so much I could relate to about what Amy and her family went through waiting for Gabriel. It was very helpful for me at the time, waiting for Molly, to have some idea what to expect and how I might even be able to prepare to say hello and goodbye so soon after our baby girl would be born (if she would even be alive at her birth). I am grateful that Amy wrote this book and recommend it to anyone who is carrying a child, or has a loved one that is pregnant, with a fatal or life-limiting diagnosis and prognosis.
The next book that I read, after Molly was born and died, was Empty Cradle, Broken Heart: Surviving the Death of Your Baby by Deborah L. Davis, Ph.D. I was very familiar with this book long before we were even pregnant with Molly, as I learned about it from my friends in the monthly perinatal bereavement support group at our local hospital that I began attending after our interstitial ectopic pregnancy. So many women and men I knew who had suffered the death of a child through stillbirth or neonatal death had found the book to be so helpful to their grief work and healing process. Many people recommended that I read it after Molly was born and died. It is a very comprehensive book which covers every aspect of what it is like to lose a baby. It is incredibly validating and reminds the reader that what they are thinking and feeling is normal after the loss(es) that they have experienced. It is a great reference that I come back to time and time again when I am feeling down and want some support and encouragement in surviving the death of my baby.
There is one book that was recommended to us and that we were given for Sean by a few of our family and friends called We Were Gonna Have a Baby, But We Had an Angel Instead. Written by Pat Schwiebert and Illustrated by Taylor Bills. We started reading it to Sean the day Molly was born and died and for many days and weeks following it was a staple in our bedtime story rotation. I mentioned the illustrator’s name because I found the pictures that accompany the story to be so precious and as powerful as the words in the book.
Sean can really relate to the story about a little boy being excited to have a baby brother or sister, but ending up with an angel in Heaven watching over us instead. He often has added his own commentary as we read the story, pointing to the little boy and saying “that’s me,” to the woman “that’s mommy,” to the man “that’s daddy” and to the angel baby “that’s Molly.” There is even a page where there are family pictures in frames and there is one with the little boy in a t-ball uniform and Sean says “that’s me in my t-ball uniform” (as at the time Molly was born and died Sean was playing on his first t-ball team in our neighborhood).
As I shared at Molly’s memorial service, the day after we buried Molly, Sean said to my mom, “Grandma Jacquie, is Molly in your heart?” And she replied, “yes, and she always will be.” Sean learned this idea of Molly being in our hearts from the book We Were Gonna Have a Baby, But We Had an Angel Instead.
Not long after Molly was born and died I found out about a book called Stay Tuned: Conversations with Dad from the Other Side by Jenniffer Weigel. She is a broadcast news and entertainment reporter in Chicago that grew up in my childhood hometown of Evanston, Illinois. Her father, Tim Weigel, was a very popular local news reporter here in Chicago for many years as well, before he died in 2001. She also happened to be in my sister’s graduating class at the high school we attended in Evanston.
It is a quick read, a page turner and really made me think about life and what happens after we and/or our loved ones die. I found Stay Tuned to be both comforting and inspiring. Grieving the loss of our baby girl, I was drawn to one of the topics/themes in Jenniffer’s book, her experiences trying to make contact with her father in Heaven after he died. I highly recommend this book to anyone that has lost a loved one.
Jen also more recently has created a one-woman play based on her book called “I’m Spiritual Dammit!” My sister, some friends and I went to see it last month, here in Chicago, and then had the opportunity to go to dinner with Jen after the play. I found the adaptation of her book into a play to be very powerful and moving. There was a point during the play where Jen spoke of what it was like to witness her father’s last breath before he died. She then went on to talk about how if and when you watch someone you love take their last breath, that you are never the same. I can certainly attest to that. I am grateful for all that I have learned from Jen through her sharing about her journey losing her father and how I have been able to relate my experience losing my daughter. I was glad to find out that Jen’s play has been extended for another run at The Chicago Center for the Performing Arts. For those of you who are in the Chicago area, she will start preforming it again in April and I do recommend it.
More recently I heard about a book called Comfortable with Uncertainty: 108 Teachings on Cultivating Fearlessness and Compassion by Pema Chodron. Going forward in our life, after losing Molly and not knowing what the future may hold for me or our family, I have felt a lot of uncertainty and some fear. Somehow I came across this book by an American Buddhist nun and I found the title compelling. I love the idea that a person can actually learn to be comfortable with uncertainty. Though I have just started the book of stand alone readings/meditations, I do find them to be helpful and thought-provoking.
In preparing for this post, I was looking at a website, that I had visited awhile back, about Perinatal Hospices. The website was created and is maintained by the authors of The first two books I told you about here: Waiting for Gabriel and Empty Cradle, Broken Heart. In looking at their website I was reminded that the two authors are also in the process of writing a new book together called A Gift of Time: Continuing Your Pregnancy with a Terminal Diagnosis by Deborah L. Davis, Ph.D and Amy Kubelbeck. It is a book that I wish had existed when I was pregnant with Molly and when it is finished that I believe will be such an awesome resource and form of support for families dealing with prenatal diagnoses and prognoses like we were given for our baby girl.
Dr. Davis and Ms. Kubelbeck invite parents who chose to continue our pregnancies after receiving a prenatal diagnosis of something expected to be life-limiting, to share our stories for this book. To participate, their questionnaire can be downloaded from their website. They hope that we will find offering our experiences to other parents to be another way of honoring our babies. I have been in contact with Ms. Kubelbeck and am working on my answers to the thoughtful and lengthy questionnaire for submission in honor and memory of our baby girl. It has been very emotional and yet therapeutic for me to retell (and in many ways relive) my story of our journey with Molly. I do hope if they are able to use any of my answers for their book that my thoughts and shared experience will be of some help to other parents and families who live through a life-limiting prenatal diagnosis for one or more of their children.
Some of you have suggested over the past year that I consider trying to have my writing published in some way in the future in effort to share our story and hopefully help others who might experience something like we have on our journey with Molly. Thank you so much for your kind words and encouragement. I am honored that you believe my writing is worthy of that and it is something that I may look into and pursue someday. However, in the meantime I am glad to be able to continue to share about our journey with Molly here and through the questionnaire that I will be submitting for Dr. Davis and Ms. Kubelbeck’s book A Gift of Time.
Lastly, for those of you who are local, I want to give you a heads up as we approach Molly’s birthday in two months. On Sunday, April 19 (two days after her birthday) the 10:00 a.m. mass at our parish St. Barnabas will be said for Molly. Following the mass we will go to the cemetery to pay our respects and honor the memory of our baby girl. After the cemetery we will come back to our home in Beverly for a brunch/BBQ (depending on the weather). You, our family and friends, who were touched by Molly’s short, but very special, life and have been so supportive of Bob, Sean and me are welcome to join us for any and all of Molly’s birthday celebration (including mass, visiting Molly’s grave at the cemetery and/or the gathering at our home). Please also feel free to pass this information and informal invitation on to any other family and friends that you think might want to know and/or participate.
Though we wish we were having a different kind of gathering that day, to celebrate Molly’s first birthday here with us on earth, it is still important to us to find ways to honor our baby girl’s life and memory on (and close to) April 17, the day we said hello and goodbye to our daughter/baby sister last year. We are also having the 8:45 a.m. mass said for Molly at St. Barnabas Parish on her birthday, Friday, April 17 and anyone is of course also welcome to attend mass that morning. However, after mass that day Bob, Sean and I plan to do our own thing, as a family, to honor and remember our baby girl.
Thank you for reading, for thinking about Molly and our family today and for your continued support, kind words and prayers. May God bless you and your loved ones today and always.