What reaction did you expect the book would cause you? Is that the reaction that you experienced while reading it?
I found myself understanding the shared insights, perspectives and experiences of many parents. In reading A Gift of Time, I felt much gratification, and even pride, in knowing that now a comprehensive guide was available to help parents in navigating the daunting decisions one faces when they know the life of their unborn child will be so brief.
Which topics/sections of the book were most helpful to you or do you think would have been had the book existed during your pregnancy with the child you lost and why?
Every section offers relevant guidnace for the situation I experienced, but I know I would have highly appreciated the "Getting Ready: Preparing for Your Baby's Birth, Life and Death" chapter because when facing our anticipated loss, I anguished over the decisions to be made (and lack of direction for circumstances for my expected loss). I also think that the chapter "Welcoming Baby: Birth Experiences and Meeting Your Baby" and the closing "Reflections" chapter would have provided much hope and comfort given the high anxiety I experienced.
What emotions did reading the diagnosis section(s) bring out in you? Did these surprise you?
I was saddened--even shocked--by some of the strong, demeaning actions/words of physicians who didn't understand/respect a family's decision to continue a pregnancy. We had a negative, disheartening experience with a perinatologist verbalizing his disapproval of our decision to let nature take its course and not end the pregancy immediately. Reading similar--or even worse--experiences shared by others in the book also made me feel an even greater, heartfelt appreciation for the tremendous support and validation we received from our OB and a neonatologist. Thankfully we had these physicians for quality medical care and a more complete/wholistic understanding of the matters of life, love and loss.
One participant in this book tour, who also contributed to A Gift of Time, has the ministry for griveing families and one of their outreaches is to provide memory-making materials to parents and hospitals facing the loss of a baby. What items do you feel are essential to families? How can they provide the best support?
These are some of the beautiful gifts we received in memory of our daughter, which were beautiful gestures in memory of our daughter:
- Our deceased baby was our only daughter, so I especially appreciated the gifts we received that were gender-specific; it's more personalized for this child I will only know in a time limited to moments instead of years. One acquaintance who had also experienced an anticipated infant loss and was a volunteer for our perinatal hospice brought a cute toy bunny dressed in soft pink--a gift that would've been a precious, sentimental gift for a baby girl. I appreciated having a cute baby girl gift! Another friend also gave us a beautiful baby girl bracelet with a prayer box charm. This was an especially touching token of acknowledging the loss of our unique child, our little girl.
- To witness the loss our two sons experienced was probably the most painful--and anger-provoking--aspect of losing our daughter. A church from another state, not affiliated with our denomination, had a beautiful ministry which sent teddy bears to families who lost children. The day after Gianna was born and died shortly after birth, three large packages were delivered to our home, each including a cuddly teddy bear--one for each of our children. Each bear had an attached tag reading "I have lived among the people of the First United Methodist Church of Evergreen Park. With them, I have heard God's Word read, prayers offered, hymns sung and sermons preached. I have been given love and I have loved others. Now, I come to you with blessings of worship and love from my dear friends." This was a beautiful ministry outreach; my boys still have their bears close to their beds, and we keep Gianna's bed with some of her items on permanent display in our house.
- Scrapbooking and journaling materials would be excellent. Creating memory books for each son in memory of their little sis, as well as a huge collective scrapbook and photo albums in memory of Gianna for our family was very therapeutic for me.
- The infant-loss specified baby books are really special too. I'm glad I knew about this before we delivered Gianna, so we had it at the hospital with us when we delivered. It has her foot and handprints, just like a regular baby book would have--as well as holds a lock of her dark brown hair.
- Sweet, small baby quilts would be a nice remembrance. We had a keepsake nightgown and blanket packed for the hospital which are now in keepsake memory boxes. Blankets, clothing and/or shadow boxes would be appreciated gifts for retaining memories.
- I regret not having any casts of our daughter's face, hands or feet. In hindsight I wish I had this done. Our perinatal hospice suggested that we take the casting materials with us, but I didn't. I thought it sounded difficult and felt overwhelmed by the prospect. Later, though, I've learned that it's simple and the casts are so precious. Had someone at the hospital offer this to us once we had Gianna, I would have appreciated the opportunity to preserve her sweet little body with casting.
- Books 'normalizing' infant loss for children were also fantastic and might be a good idea for sharing with others. I bought the book We Were Going to have a Baby, but We Have an Angel Instead for my sons because I loved the way that the hard realities of infant loss are reflected in a simple way for children to understand.
After your loss, what kind of support was most helpful to you?
We were so fortunate to have amazing support from so many in our community and from our perinatal hospital's services for bereaved families. I attended an infant-loss support group sponsored by a local hospital twice a month, too, and that was very helpful. I read the monthly publications from M.E.N.D. (Mommies Enduring Neonatal Death/http://www.mend.org/) and found those articles to be very helpful too.
Talking to friends and our perinatal hospice director and volunteer who had also experienced a pregnancy or infant loss was very helpful for me processing grief, too. (Some of these individuals were friendly acquaintances--or even strangers-- prior to the diagnosis of our daughter, but upon learning of the diagnosis of our daughter quickly transformed into shining anchors and extraordinary friends who will have a special place in our hearts forevermore.)
During pregnancy the books Waiting with Gabriel by Amy Kuebelbeck and Letters to Gabriel by Karen Garver Santorum were beacons of hope for me, given my anticipated loss and anticipatory grief.
After Gianna was born and died, several books were great for helping me process my post-loss grief:
Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death by Sherokee Ilse
An Empty Cradle, A Full Heart by Christine O'Keeffe Lafser
Mommy, Please Don't Cry: There Are No Tears in Heaven by Linda DeYmaz
I'll Hold You in Heaven by Jack Hayford
Lastly, two years after Gianna's birth, we learned about Faith's Lodge and were encouraged to apply for a retreat with other families. Staying there and having some quiet time to reflect on our experience, after our lives had resumed the new normal, was a wonderful experience. Visit http://www.faithslodge.org/ for more information.
To continue to the next leg of this virtual book tour, please visit the main list href=http://chicagobensons.blogspot.com/
Wednesday, March 30, 2011
Tuesday, March 15, 2011
Questions for the virtual book tour for _A Gift of Time_
Last night I finally read the book. So many experierences by other parents resonate--some in articulating the bittersweet joys and expressions of love, and others almost eerily reminding me of the most challenging moments. Here are some of the questions that come to mind as I reflect on what I've read and prepare for the virtual book tour:
Questions for anyone:
1. This book collectively offers many insights and suggestions for parents coping with the devastating news of an anticipated infant loss. If you could offer only one piece of advice for a parent who has just learned the fatal diagnosis of their child, what critical guidance would you first offer to parents? What critical guidance would you offer to their physicians/nurses/etc...? And, what essential guidance would you extend to friends and family of that family?
2. If you yourself are 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?
For the authors:
1. How did you connect with one another in conceptualizing the need for this resource guide, and do you know of any OB/neonatology/perinatology programs likely to infuse the guiding principles outlined throughout this book in the training?
2. Throughout A Gift of Time, beautiful tributes to physicians and other care providers who supported families' decisions to continue pregnancies to term, while knowing the unborn child wouldn't survive long after birth, are shared. However, this book also details personal testimonies of parents who encounter narrow-sighted and even dismissive and demeaning perspectives from physicians; particularly disturbing to me, personally, are the accounts of dissonancy in medical practice, in which parents are pressured to immediately terminate the pregnancy [because from a utilitarian perspective, the unborn baby's life will offer no 'value']--and yet those same parents are eventually chastened by those very same physicians for later declining aggressive medical interventions and instead limiting measures to compassionate care after the child is born. (E.g., Amy's story on p. 145 and Kathleen's story on p. 160.)
Can you speak to the extent that physicians-in-training generally receive guidance in making well-formulated ethical decisions in complicated medical quandaries? Any insights, in addition to those shared in the book, as to why this field of medical ethics seems to be so heavily utilitarian in perspective? Are there any training models you've seen which you think are outstanding?
Anyone is welcome to post their thoughts on this blog!
Questions for anyone:
1. This book collectively offers many insights and suggestions for parents coping with the devastating news of an anticipated infant loss. If you could offer only one piece of advice for a parent who has just learned the fatal diagnosis of their child, what critical guidance would you first offer to parents? What critical guidance would you offer to their physicians/nurses/etc...? And, what essential guidance would you extend to friends and family of that family?
2. If you yourself are 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?
For the authors:
1. How did you connect with one another in conceptualizing the need for this resource guide, and do you know of any OB/neonatology/perinatology programs likely to infuse the guiding principles outlined throughout this book in the training?
2. Throughout A Gift of Time, beautiful tributes to physicians and other care providers who supported families' decisions to continue pregnancies to term, while knowing the unborn child wouldn't survive long after birth, are shared. However, this book also details personal testimonies of parents who encounter narrow-sighted and even dismissive and demeaning perspectives from physicians; particularly disturbing to me, personally, are the accounts of dissonancy in medical practice, in which parents are pressured to immediately terminate the pregnancy [because from a utilitarian perspective, the unborn baby's life will offer no 'value']--and yet those same parents are eventually chastened by those very same physicians for later declining aggressive medical interventions and instead limiting measures to compassionate care after the child is born. (E.g., Amy's story on p. 145 and Kathleen's story on p. 160.)
Can you speak to the extent that physicians-in-training generally receive guidance in making well-formulated ethical decisions in complicated medical quandaries? Any insights, in addition to those shared in the book, as to why this field of medical ethics seems to be so heavily utilitarian in perspective? Are there any training models you've seen which you think are outstanding?
Anyone is welcome to post their thoughts on this blog!
Tuesday, March 8, 2011
"Love Me Tender, Love Me True" Article by Kara Hansen
http://www.theleaven.com/past_issues/_pdf/v29/Leaven%2001-25-08.pdf
This is an article about our family's time with Gianna, in anticipation of her loss, written by dear friend and fellow Benedictine College Raven Kara Hansen. Kara's article was reprinted in multiple Catholic diocese newspapers throughtout the United States and awarded her the distinction of having written the best feature for journalism among North American journalists. No, we couldn't be more proud of our friend's talent!
This is an article about our family's time with Gianna, in anticipation of her loss, written by dear friend and fellow Benedictine College Raven Kara Hansen. Kara's article was reprinted in multiple Catholic diocese newspapers throughtout the United States and awarded her the distinction of having written the best feature for journalism among North American journalists. No, we couldn't be more proud of our friend's talent!
A Gift of Time: Continuing Your Pregnancy When Your Baby's Life is Expected to Be Brief
I'm establishing this blog in order to connect with other bereaved parents who contributed to A Gift of Time: Continuing Your Pregnancy When Your Baby's Life is Expected to Be Brief, by Amy Kuebelbeck and Deborah Davis. Amy's book Waiting with Gabriel was instrumental, personally, as my husband and I prepared to briefly hold our infant daughter, whom we knew wouldn't survive more than an hour or two after birth.
Amy Kuebelbeck's shared personal perspectives, and bittersweet celebrations of Gabriel's short life inspired my husband and I to develop a focused plan for our very brief time with our daughter, Gianna Marie. Essentially, we learned through those shared perspectives that despite the tremendous sadness, heartache and disbelief that our child wouldn't live, we could actually hope for some consolation and even peace. Even experience a glimmer of hope for beauty in our time with our dying baby. I couldn't stop reading the book once I started. I suddenly realized that I wasn't alone in this experience. I read the book from cover to cover in a few hours, and went through several boxes of tissue as I lay in bed and felt my unborn child moving inside my womb.
The next day I insisted that my husband read the book. And he did, immediately. And then we requested that our parents read the book, as we believed it would help them prepare for Gianna's birth and better understand how we wanted to navigate our preparation for our baby's birth.
When we learned of the opportunity to share our insights with other parents through contributing to A Gift of Time, we both wanted to do so--in order to reach out and hopefully assist others who decide to continue pregnancies, despite knowing their child will soon die. It's our hope that many parents who in the future receive devastating news will find this resource to be a source of strength and hope during a most trying life experience.
Amy Kuebelbeck's shared personal perspectives, and bittersweet celebrations of Gabriel's short life inspired my husband and I to develop a focused plan for our very brief time with our daughter, Gianna Marie. Essentially, we learned through those shared perspectives that despite the tremendous sadness, heartache and disbelief that our child wouldn't live, we could actually hope for some consolation and even peace. Even experience a glimmer of hope for beauty in our time with our dying baby. I couldn't stop reading the book once I started. I suddenly realized that I wasn't alone in this experience. I read the book from cover to cover in a few hours, and went through several boxes of tissue as I lay in bed and felt my unborn child moving inside my womb.
The next day I insisted that my husband read the book. And he did, immediately. And then we requested that our parents read the book, as we believed it would help them prepare for Gianna's birth and better understand how we wanted to navigate our preparation for our baby's birth.
When we learned of the opportunity to share our insights with other parents through contributing to A Gift of Time, we both wanted to do so--in order to reach out and hopefully assist others who decide to continue pregnancies, despite knowing their child will soon die. It's our hope that many parents who in the future receive devastating news will find this resource to be a source of strength and hope during a most trying life experience.
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