Below are my responses to some of the questions; I apologize if they are not as lengthy or detailed; I am recovering from surgery and have a bit of a foggy mind due to pain killers!
What would you tell parents who have received a fatal diagnosis? What do you wish someone told you?
I have been fortunate to assist some parents since the birth and death of Colm. The first parents I counseled proved to be the most difficult, but not for the reasons you may think. About 7 months after Colm's birth, I was asked to meet with a couple from our church, who had just recently found out that their unborn daughter had Trisomy 13. I spoke to the mother on the phone, and she told me that they had already scheduled the early induction @ 20 weeks for their daughter. I was shocked, as I thought I would be helping this family through the life of their daughter. She was very matter of fact, and told me the very detailed plan that her OB/GYN had planned out for her for delivery. I knew that there was no talking her out of the decision that had been made, and I found myself grieving for their unborn daughter, and for both of them.
Other parents that I have talked with have chosen to continue their pregnancy, as we did. My advice to them is to always cherish each and every moment they have with their baby: during the pregnancy, delivery and whatever time they may have after with their baby. You can't get those moments back, and that is what will sustain you in the years after their child's life.
I had a woman (Jessica in the book) who did help me through our pregnancy, and the grieving after. She was so helpful, and honestly, gave us such loving advice on savoring each moment with Colm. The only regret I have now is that I didn't call upon her and Brad to come to the hospital to take pictures for us, as they had offered. I was afraid of burdening them - and I now realize that they simply wanted to give us a cherished life gift. That would be the only other advice that I share, as our only regret.
What do you wish caregivers/doctors/nurses/hospital staff knew, in order to be better equipped to support families in this situation?
So much more, especially during the pregnancy. My OB/GYN was not at all supportive, and from the moment their was a hint of something wrong with the pregnancy, each dr. I encountered at the practice treated me and my son as a bother. They didn't know how to handle me emotionally, wanted me to end the pregnancy so we could move forward and try to have another baby (because I wasn't getting younger...to quote one of them drs.). The drs. and their staff need to appreciate the life choice that their patients make, and support it in every way. They need to read and live by this book!
As a bereaved parent, how have you continued to celebrate the memory of your deceased infant, and what resources did you utilize to help you cope with your loss?
One of the first things I did, was connect with another group of moms who have experienced a similar situation and loss, and we formed a support group (Prenatal Partners for Life). This effort was an act of love to honor the memory of our children, and helped to celebrate their lives through our efforts. I have found talking about Colm with our family and friends has helped to keep his memory alive; I am a teacher, and each year my class knows about one of my children who lives in Heaven. I bring in birthday treats for my class to celebrate his birthday at school, as he should be able to do. The kids love it, and are so understanding about it. Our family also celebrates his life each Christmas by purchasing an ornament for our tree for Colm, and I purchase a gift for a boy of his age (that he would be) to donate to Toys for Tots. His stocking hangs on our fireplace mantle, and he is a part of each holiday. To honor his birthday, we have a dinner that would be what a boy his age would want to have. This year, it was McDonald's and the year before that, corn dogs and macaroni and cheese. We have a cupcake, make a birthday wish and know that he is celebrating with the angels in Heaven.
Thank you so much for contributing your story to A Gift of Time and for participating in this book tour Pam!
ReplyDeleteI hope that your recovery from surgery is going well. I am impressed that you made time to still share your answers/thoughts with us, even if you are feeling a bit foggy. :)
I love the advice that you shared and give to other parents who chose to continue their pregnancies after receiving a fatal or life-limiting prenatal diagnosis and prognosis, “To always cherish each and every moment they have with their baby: during the pregnancy, delivery and whatever time they may have after with their baby. You can't get those moments back, and that is what will sustain you in the years after their child's life.”
Having been through such an experience, I think that is wonderful advice. I agree that being able to soak in those special moments during your pregnancy and after the delivery really does help to sustain us in the years to follow.
I am so glad that you had Jessica in your life when you carried Colm and after his death. I too was blessed to have some other women in my life who were able to mentor me through the grief and healing process after my daughter Molly was born and died in April 2008.
I am so sorry that your doctors were not supportive of your choice to continue your pregnancy with Colm and make the most of the “gift of time” that you had with your son. I am grateful to have had doctors care for us and our baby girl who were very supportive of our wishes for me to carry our daughter Molly as long as possible.
That said, our doctors were definitely in somewhat uncharted territory going through this experience with us. As I shared in my blog post today, I wish they would have been able to direct us to more resources and support during our pregnancy with Molly. I am so glad that A Gift of Time is available now for medical professionals to review and share with their patients who may someday be able to benefit from reading it. I second what you said about doctors needing to “read and live by this book!”
I was very moved by your answer to the last question you chose to discuss! I am teary eyed now writing this. I am glad that you found a support group (love the name) to be able to connect with other women who have been there and understand. I too have participated in a perinatal bereavement support group for years (ours is called “Caring Connections”) and find it so helpful and healing to be able to communicate with others who “get it.”
I think it is so awesome that you share about Colm with your class each year and bring in treats on his birthday, as he would have. That is so sweet! I love that you are teaching your students to honor life no matter how small or long a person was here. I hope that they will grow up to be more compassionate people who will be open to talking with those in their life that may someday experience the loss of a child.
I really appreciate the traditions you shared about how you keep Colm’s memory alive in your family. From purchasing a special ornament each year for your tree, to his stocking and the donation in his honor to Toys for Tots.
We also donate gifts each Christmas through our church’s “Reg Tag” program to families in need. We always choose a red tag in honor of each of our children (living and in Heaven). We choose tags for the age (at the time) and gender of our living son and daughter and for a girl the age that Molly would be if she had lived.
I also like how you have a dinner on his birthday that a boy his age would want to eat! For some reason reading about you doing that really melted my heart. I may have to adopt that tradition as we approach our daughter Molly’s 3rd Heavenly Birthday next month.
Thank you again Pam for participating in the A Gift of Time book tour and for sharing part of your story as a contributor to A Gift of Time! I really enjoyed your heartfelt and interesting answers to the questions you chose to discuss.
Take care and God bless,
Kathy
Hi, Pam! I hope your recovery is swift. Thanks for participating in the virtual book--especially as you're recovering. As I read your response about how unsupportive your physician was, I wanted to give you a hug and warm smile and let you know how sorry I am that so many in the medical community are failing parents like us. Hopefully this book--and an on-going open, honest dialogue about parents' emotional and spiritual needs (as well as some other critical factors) will help forge some impactful change. We encountered one physician who was hostile toward our decision to continue the pregnancy to term, but thankfully we were also served well by two other physicians who were amazingly informative, honest and supportive and understood our perspective as beyond a utilitarian one.
ReplyDeleteI, too, have some regrets about things we did/didn't do during pregancy (--never having regretted carrying our baby to 38.5 weeks, though). I'm sorry you don't have the pictures to treasure. When I've caught myself anguishing with "I should have. . . " or "It would have been better for so-and-so had I done ____________", I've reminded myself that we were at an incredibly vulnerable point and we simply did the best we could do during that most challenging time. I hope that as couples facing difficult grief in the future encounter __A Gift of Time__that the numbers of parents experiencing significant regrets will be fewer, but hindsight is always 20/20--no matter what amount of preparation has been done.
I've also found counseling other parents referred to us through friends and our perinatal hospice to be a rewarding, living legacy of our daughter's memory. About two years after our loss, though, I found myself so engaged in helping others that it was consuming much of my focus, and I stepped back from volunteering with intentionality. Initially I felt guilty, because I knew how much I valued those who directly served us--and while I could never directly repay them for their time and aid, I felt as though I was paying a tribute to them when I helped others. After stepping back for an extended time, though, I've gradually resumed the volunteer assistance for families with recent losses--and it's nice again to put service into the heart of my belief that LIFE--ALL LIFE--IS BEAUTIFUL. Blessings~ Jennifer, Gianna's Mom
Hi Pam,
ReplyDeleteThanks so much for taking the time to answer the questions and join the tour, even when you are feeling under the weather. Praying for a speedy recovery for you!
I am so sorry that the hospital staff was not more supportive. We encountered some of this. Some were understanding, but many were not compassionate. One of the goals of our ministry is to go and share with hospitals ways that they can better support bereaved families and honor their choices. A Gift of Time is a wonderful resource we plan to use for that purpose.
It is wonderful that you are reaching out to other families walking this path. I too have been heartbroken by some of the families we have encountered through our ministry who chose to end the pregnancy early. We reach out and offer whatever support, love, encouragement and memory-making materials we can, in these circumstances as well as to the families who choose to continue. But, the experiences are much different. We would of course encourage any and all families who come to us before making a decision to continue the pregnancy. But, they don't always make that decision. I am hopeful that books like A Gift of Time and the perinatal hospice organization will encourage more families to continue these pregnancies, and view this time with their child differently. I so appreciate Amy and Deborah's efforts.
I love the ways you honor the memory of Colm's precious life. We do some of the same things. I also love that you share his life with your students. In addition to our ministry, I work with special needs children in a typical classroom. I have found children have such a healthy attitude about death, heaven, and grief. We can learn a lot from them.
Blessings to you and your family...
Dear Pam, thank you for participating in this tour! The work you have done to support other parents is a beautiful tribute to Colm. I have always remembered what you wrote about your genetic counselor, who told you, "I am so sorry; I have nothing to give you for support." You are now part of tangible support that can be offered to many others. Thank you for sharing Colm with us. You are his mom always. Amy
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