A Gift of Time Book Tour (My Take)

by Kathy on March 30, 2011 · 6 comments

in Abby, ALI Community, Bob, Book Tours, Books, Decisions, Family, Healing, Loss, Memories, Molly, Sean

Greetings and welcome to this stop on the A Gift of Time Book Tour!

This is my third time participating in a book tour and my first time hosting one. My previous experiences were with Eat, Pray, Love and Life from Scratch.

For those of you not familiar with book tours, they are essentially online book clubs. On a given date the tour leader, in this case yours truly, collects one or more questions from each reader. Soon after that we all receive a list of questions (that were posed by our fellow book club members, each participant submits at least one question) from which we are to choose three to answer on our blog in a post, such as this.

I am so excited about this book tour for A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief By Amy Kuebelbeck and Deborah L. Davis, Ph.D. As I shared in the review I wrote for Exhale Literary Magazine, this newly published book (January 2011) was written by the authors of two successful and widely read books for parents who have lost children: Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life and Empty Cradle, Broken Heart: Surviving the Death of Your Baby. I read both of them during my family’s five year roller coaster ride through secondary infertility, pregnancy loss and neonatal death. They helped me to cope and to heal throughout our journey, especially before and after the birth and death of our second child, Molly, who was born and died in April 2008.

I wish A Gift of Timehad existed when we got the diagnosis and prognosis for our baby girl early on in the second trimester of our pregnancy. I am pleased that it is now available as a resource for anyone going forward given diagnoses and prognoses that their unborn children may not live long before or after they are born.

A Gift of Timewas very moving for me to read, and I could relate to so many of the contributors’ stories. Over 120 parents (including myself) shared their personal experiences with the authors to help make this possible and are quoted throughout the text. I really like how the authors tied it all together with their thoughtful and informative commentary throughout the book. The book is also well organized with a detailed Table of Contents, so that readers can either approach it from beginning to end, or pick and choose the parts that may best apply to their situation or where they are at any given time on their journeys.

I also found it healing to read A Gift of Time at this point on our journey (almost three years since Molly’s birth and death), as we never get over the death of our children. It has helped in my efforts of continuing to work through my grief and make peace with our loss. I think this book is an insightful resource for those who have been there and for those who will someday live through such an experience. I also highly recommend A Gift of Timefor friends, family members, medical professionals and support staff that care for those who are pregnant with babies who are not expected to live long.

I first wrote about finding out that this book was being written two years ago in this post about the books I have read that helped me to cope, grieve and heal before and after our pregnancy with and the death of our first daughter Molly. I also shared about it again in this post on our angel Molly’s 1st Heavenly Birthday in April 2009. I am so glad that this book is finally here and available for people to read!

And now, without further ado, here are the questions I chose to consider and my answers to them (please feel free to comment and share your thoughts about the questions and/or my answers). Though we only “had to” answer 3, there were so many good ones, that I actually chose to answer 6:

Question 1: What reaction did you expect the book would cause you? Is that the reaction that you experienced while reading it?

I don’t know that I really had any expectations for the reaction reading A Gift of Timewould cause me, at least that I was conscious of. This is actually surprising, as typically in life I struggle with having unrealistic expectations and am often disappointed. This is something I am continually working on in my life, managing expectations.

That said, when I first got my hands on the book back in January I was taken a back a bit by the level of emotion I was overcome with as I skimmed through it for the first time, trying to take in the overall feel of it and get a sense of what the authors had intended in creating it. I was drawn to various sections and many of the other contributors’ stories. Within minutes I was bawling, in part because I felt such deep connections to the other parents who had also shared so candidly their stories and experience of carrying their babies knowing it was unlikely they would live long before or after their births. The other reason I think I got so emotional was because it brought back a lot painful and also beautiful memories from our journey with our daughter Molly who had a rare, severe and fatal combination of congenital heart defects.

It also meant a lot to me, and again I got teary eyed, when I first saw the two quotes (on pages 82 and 137-138) that the authors chose to include from me in A Gift of Time. I am quoted as “Kath” in the book. I had actually forgotten about this, but on the questionnaire, the authors asked if there were any other names we were willing to go by in the book, if another contributor had the same name as we did. I wrote Kathleen, Kathy and Kath as options. In retrospect I wish I had written Kathleen B. or Kathy B. as alternatives, as though some of my close friends and family members call me “Kath,” it felt a little weird to me to see myself quoted that way in the book for some reason. Though I know in the grand scheme of things, it really doesn’t matter how I am referred to in the book.

I am honored that the part of our journey with Molly included in this book may be able to help others who have or will one day live through such a bittersweet experience. I was also very moved to see Molly’s name in print in A Gift of Time. Seeing and hearing our baby girl’s name never gets old or loses its magic for me and helps me to keep her memory alive in my mind and my heart.

For those who have not read the book, the two quotes that were used from me, have to do with how we helped Sean to learn about and better understand what was happening with his baby sister during our pregnancy in 2008. The first one, on page 82, talks about how we developed a special ritual with Sean before he went to bed, during the final days leading up to Molly’s birth and death, that we called “Questions.” During that time Sean could ask us anything he wanted to about Molly, about her being sick and about what might happen after she was born and died. The second quote, on pages 137-138 came from this post on my blog, in which I shared about the night we first told Sean that Molly had grown big enough at that time that she could probably hear us from inside my tummy when we talked and sang to her.

I spent a lot of time back in February 2009 working on my answers to their questionnaire for potential contributors to this book. That experience in and of itself was therapeutic for me and I am grateful for that. As I already mentioned, I struggle with managing my expectations in life. So to be honest I was also disappointed that more of what I shared was not included in the book. I realize there may have been a number of reasons for this and try not to spend too much time trying to figure it out. Regardless of how much of our journey with Molly “got to” be in A Gift of Time, I still am very pleased to have had the opportunity to be a part this incredible resource.

Question 2: Were there any topics that were not covered in the book, that you wished had been addressed, especially in light of your own experience? Why do you think the authors chose not to discuss these in A Gift of Time?

I wish that there had been a section of Chapter 5: Making Medical Decisions that addressed when and if parents have to consider medical intervention during their pregnancies, in addition to the discussion about it after their baby is born. Readers can certainly review the section that talks about considerations regarding medical interventionpost-delivery and apply it to some degree to possible medical intervention in utero. However, personally, I think there are significant differences between the decision making process that surrounds using medical intervention during a pregnancy with a poor prenatal diagnosis and prognosis and using medical intervention after the baby is born.

In our particular situation, we were given the choice whether or not to intervene at the point in our pregnancy when our daughter Molly’s heart began to fail (about 20 weeks gestation). We did a lot medical research, as well as soul searching prior to this point, so that when the time came we would feel as prepared as possible to make that choice. In our case intervention meant either that I would take medication in effort to try to save our child’s life or we would let nature take its course. The second option meant that it was unlikely that Molly would be born alive or that she would survive to a gestational age that would allow for even the faintest possibility of medical intervention after her birth.

This was a very difficult decision for us to make, as we didn’t want our daughter to suffer or to prolong the inevitable. However, when Molly’s heart started to show signs of failure, we did choose to intervene, as I didn’t think I could live with myself if I didn’t believe that we had given our daughter every chance at life. Having used Assisted Reproduction Technology (ART), including medication, to conceive Molly and to sustain her existence during the first trimester of our pregnancy, it made sense to us that we would also allow for the opportunity for our daughter to benefit from medical technology at this point in her life. I took Terbutaline and then later added Digoxin, both oral medications, that Molly received through her placenta/umbilical cord, between 20 – 26 weeks gestation in effort to try to help Molly’s heart beat faster and be stronger. At 23 weeks ascites (fluid in Molly’s abdomen) was discovered, which is a significant sign of impending heart failure. At 25 weeks the ascites had gotten considerably worse, despite our efforts to do everything we could medically to help Molly and we decided I would stop taking the medication.

At this point we did our best to accept and make peace with the idea that it was unlikely that our daughter would survive in utero long enough to be a candidate for medical intervention after her birth.

If another family was in a situation similar to ours in the future, I think it would have been helpful for that topic to have been covered in A Gift of Time. However, I realize that this book could not possibly address every unique situation and experience contributors dealt with and future readers might face during their pregnancies with fatal or life-limiting prenatal diagnoses and prognoses.

I am not sure why the authors did not choose to address this particular topic specifically. I did share this part our story and experience when I submitted my answers to their questionnaire for potential contributors to A Gift of Time. I understand that most pregnancies with poor prenatal diagnosis and prognosis do not have opportunities for prenatal medical intervention and thus maybe the authors did not think it was a relevant topic for the majority of those who will find themselves in a situation where they would want or need to read the book.

Question 3: 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?

Get your hands on a copy of the book A Gift of Time! That is how important I think this book is to parents who are discerning what do to next after learning about a fatal or life-limiting prenatal diagnosis and prognosis.

When we first got our diagnosis and prognosis for Molly I asked the perinatal cardiologist for any resources or recommendations for support that she could give us and though she said she felt bad about it, sadly there was nothing she was able to suggest to us. Our doctor definitely indicated that she wished she did have resources that she was able to direct us towards.

As for what kind of critical guidance I would offer to physicians/nurses/etc., I think A Gift of Timeis also an incredible resource for those in the medical field to be familiar with, especially those who provide medical care for families who are experiencing pregnancies with a poor prenatal diagnosis and prognosis.

For this reason, next month in honor and memory of our daughter Molly, as we approach the 3rd anniversary of her birth and death on April 17, we plan to give copies of A Gift of Timeto many of the medical professionals that cared for us and our baby girl during and after our pregnancy with her in 2008. We intend to give one to our OB/GYN’s office, one to the Maternal Fetal Medicine (MFM) specialist’s office, one to the Perinatal Cardiologist’s office, one to the Perinatal Bereavement Coordinator/Program at the hospital where Molly was born and died and one to the Chaplains/Office of Ministry there.

Again, I really wish A Gift of Time had existed when we were received Molly’s poor prenatal diagnosis and prognosis and I am so glad that it is available now as a resource for those who sadly may someday need it. I want all of the doctors, nurses, chaplains and other caregivers that worked with us during and since our pregnancy with Molly to know about this book and be able to suggest it to patients that they may care for in the future that could benefit from perinatal hospice.

Lastly, though I do think reading A Gift of Timeis also a great idea for friends and family members of those who are experiencing a pregnancy with a fatal or life-limiting prenatal diagnosis and prognosis to read as well, I do have another piece of advice that I would consider “essential guidance” for family and friends who find themselves trying to support loved ones in such a situation. What helped me the most was being able to talk openly about how I was feeling and what we were going through.

I appreciate how uncomfortable talking about our situation may have made some of our family and friends feel. I get that many people at times like this don’t know what to say and thus choose not to say anything. However, I cannot say enough about how much it meant to me to have friends and family members who genuinely wanted to be there for us to listen and to show their support.

Both before and after Molly’s death there were certain people in our life who made it very clear how much they cared and would check in with us regularly to see how we were doing. I am not suggesting that friends and family members nag or bombard those who are going through something like this. However, often when I didn’t feel I had the “strength” to pick up the phone or try to contact a friend or family member directly, I was grateful for those who consistently called, emailed, sent letters/cards and paid visits to me and my family.

That said, I also understand that some people might not want this level attention during a time like this. So I don’t believe that there is a “one size fits all” answer to this question. As I am sure other readers and contributors will attest to, grief is a very personal experience and I appreciate that no two people deal with loss and healing in the exact same way.

Question 4: After your loss, what kind of support was most helpful to you?

Being able to communicate with other parents who have “been there/here” was and continues to be extremely helpful for me. I did/do this through attending monthly perinatal bereavement support group meetings at the hospital where I delivered all of my children and where Molly was born and died. I also have been able to do so through this blog, as well as reading and commenting on other blogs written by women who have experienced the loss of a child(ren).

Reading was and continues to also be very therapeutic for me. As I shared earlier in this post, reading two of the authors of A Gift of Time’s other books was very helpful to me during and after our pregnancy with Molly and her death. There have been many other books, magazine articles and blog posts that I have found very inspiring and validating along the way.

Writing here on my blog and the CarePage we created during our pregnancy with Molly has also been very therapeutic. The act of writing and processing my thoughts and experiences has helped a lot with my grief and healing. I am also grateful for the unbelievable amount of support my family and I have received over the years through comments here, messages on our CarePage, emails and letters/cards via snail mail.

I have vowed ever since our journey with Molly that whenever someone I know is going through a difficult time in their life and they or their loved ones starts a CarePage, a Caring Bridge page or a blog to share about their experience, that I will return the favor, trying to comment consistently on CarePage updates and blog posts. With the advent of Facebook, which I did not join until after Molly’s birth and death, I also try to be as supportive as I can when people share about such experiences via “status updates” and “notes” there. I know what a lifeline those messages of care and support were for me during that time in my life.

Question 5: For most of the contributors to A Gift of Time, many years have now come and gone since the deaths of our babies. Looking back on your pregnancy and experience since the birth and death of your child(ren) has your perspective changed at all over the years? Do you have any regrets or think that you would do anything differently, “knowing what you know now?”

It is hard to believe that almost three years have come and gone since our daughter Molly was born and died in 2008.

I have heard that most people who live through an experience like we did, and other contributors to A Gift of Time, will say they have no regrets and “wouldn’t change a thing.” I don’t know if that is true, but I certainly can understand and respect that many parents who have lost babies through such circumstances have been able to make peace with the decisions they made and truly believe that if given the chance to do anything differently they would not.

As I shared in this post that I wrote for the “Inconceivable Choices” section of my friend Carolyn Savage’s website, for her book Inconceivable, and alluded to in the answer to one the previous questions, it is hard to say if we would make the same choice given the opportunity to do it over again, especially “knowing what we know now.” Sometimes we second guess having intervened when Molly’s heart began to fail. Since in the end our baby girl died anyway, we wonder if we prolonged the inevitable for everyone involved. If we had not intervened, Molly would have died sooner and we might have saved ourselves, our loved ones and especially Molly, from suffering for as long as we did during our pregnancy. However, we never gave up hope that our daughter might survive long enough to be eligible for potential life saving surgeries and thus it made sense to us (especially me, as her mother) to try to help her stay alive as long as possible. We believe that we made the best decisions we could with the information we had at the time and we have no regrets about that.

I also want to share that I did not read A Gift of Time co-author Amy Kuebelbeck’s book Waiting with Gabriel until after the point in our pregnancy when we had already made the decision to use medical intervention to try to save Molly’s life in utero. I sometimes wonder if I had become aware of the book and read it earlier on in my pregnancy and/or if A Gift of Timehad existed back then, if we would have been more inclined not to intervene.

I don’t think while I was carrying Molly that I fully grasped what her life would or could have been like if by some miracle she had been able to survive longer and had been healthy enough for potential “life saving” surgeries after her birth. I may have been in denial, wanting to believe that if it was “meant to be” she would and could go on to live a healthy and fairly normal life. Or maybe I just truly didn’t understand how hard her and our lives might have been if she had lived longer. Regardless, most of the time I am able to see and believe that it was a blessing that our baby girl died peacefully in her Daddy’s arms not long after her birth after all that she and we had been through together.

Question 6: Whether or not you believe that “everything happens for a reason,” what good have you found that has come from your experience parenting a baby that did not live long before or after their birth?

I used to believe that everything happens for a reason. Though now, in part because of our journey with Molly, that is a theology that I am no longer able to embrace. That is a discussion for another day and topic that I have contemplated blogging about sometime.

That said, I do believe that much good has come from my experience parenting Molly. One of the “greater goods” would definitely be that I have been able to be a “wounded healer” and help other parents, especially mothers, who have experienced the loss of a baby before or not long after their birth. There were many parents who lived through such an experience before I did that were able to help me through those early and extremely painful days and months after Molly’s birth and death. I feel blessed that I have been able and continue to try to pay it forward.

Another good thing that has come from our journey parenting Molly was to be reminded how important it is to truly appreciate each of our children for who they are and for however long we are blessed to have them in our lives and in our care. I certainly hope, wish and pray that my living children will lead long and healthy lives, but I also know firsthand there are no guarantees. I try to make the most of everyday that I have with my family and cherish each moment I get to spend with my husband of 10 ½ years Bob, my 7 year old son Sean and my 18 month old daughter Abigail.

I am also very grateful for the “gift of time” we had with our second child, our first daughter and forever our baby girl Molly.

My Favorite Question from the A Gift of Time Questionarre: I have shared here on my blog in the past what my favorite of all of the authors’ questions for the A Gift of TimeQuestionarre was and my answer (which I wrote in February 2009). However, I wanted to share it again, as I know for many of you it may be the first time you have read these words.

Question: If you could reach back in time and say something to yourself on the day of the diagnosis, what would you say?

My answer: This really sucks, there is no doubt about that. I am so sorry that this is happening to your baby girl, to you and your family. You will get through this. It will be the hardest thing you have ever done, but you can and you will survive. You will have a lot of support from your family and friends. The doctors, nurses and lay people who will treat you and your baby during your pregnancy and beyond may not give you all the answers you are looking for along the way, but they will show you wonderful care and compassion. You and Bob will make the best decisions you can along the way with the information you have at the time. There is no right or wrong answer to most of the questions you will be faced with. Do your research and then follow your head and your heart, hopefully most of the time they will lead you in the same direction.

Try to be patient with everyone you come into contact with on your journey with your baby girl. Many people will not know what to say or how to treat you, but most of them will have the best of intentions. Please keep that in mind, as this journey will not be easy for your loved ones either. There will be people in your life that will show great care and concern for you and your family. Some of them may surprise you, in a good way, and it will deepen and strengthen your relationships. There will also be people in your life that unfortunately will disappoint you. These people won’t understand what you are going through and won’t make enough of an effort to try to learn how they can help and be there to truly support you.

Your baby girl is going to teach you, your loved ones and even strangers so much about life and love. Your daughter, though her heart is broken, and you may feel like yours is too right now, is going to touch so many hearts. She is going to bring people together and inspire them to communicate, believe, hope and pray. You, Bob and Sean will grow, mature and become more compassionate people from being Molly’s parents and big brother. Through your experience with your daughter you will in turn be able to help others in the future who have lost a baby or loved ones of any age. Share about your experience openly with those who are willing to listen, support and encourage you. In turn you will learn from them and they will learn from you and you will all be able to help others who you know or meet who are faced with personal tragedies.

Don’t ever give up. Don’t lose hope. Always believe in yourself, in your loved ones and in God’s love for you all. This journey may not end they way you hope and pray that it will, with Molly getting to be a part of your family here on earth, but that doesn’t mean that her life will be without purpose or reason. You are an incredible mother, wife, daughter, friend and human being. Hang in there and try to live one day, and even one hour if you need to, at a time. Try to find joy in your journey and not to focus so much on your destination. I am proud of you!

To continue to the next leg of this book tour, please visit the main list here at Four of a Kind.

Thank you for reading my thoughts on A Gift of Timeand my answers to the questions I chose to answer for the book tour. I look forward to your comments.

Lastly, if you enjoyed this book tour experience and would like to participate in another soon, I am hosting one here on Four of a Kind (with author and contributor participation). The book is called Inconceivable: A Medical Mistake, the Baby We Couldn’t Keep and Our Choice to Deliver the Ultimate Gift by Carolyn and Sean Savage. You can read more about it and find out how to sign up in this post.

{ 4 comments… read them below or add one }

1 Jennifer March 30, 2011 at 11:31 am

Hi, Kathy! Thank you for sharing your enlightening thoughts–and for orchestrating this virtual book tour! Your blogging is so impressive to a newbie like myself. I'm struck by several striking similarities with you I've discovered in reading your responses to these questions, and I'm even more delighted knowing that we'll have the opportunity to connect in person this fall at Faith's Lodge. I, too, theologically struggled with well-intended, genuinely embraced notions/suggests that I should find relief in "everything happens for a reason", and while knowing those intentions (expressed by MANY consoling our broken hearts) are golden, I did internally perceive(–given my more melancholic, questioning nature–)such expressions as empty placations, sometimes prompting me to feel even more alone. I think that I also found myself reluctant to share my views more openly because of the risk of being perceived as doubtful, or not being open to God's abundant grace. As you stated, we could write theological essays for days on end on this topic, so pardon me if my follow-up here is unbeneficial, but I did want to note that your shared reaction resonated–deeply–with my own experience/faith/philosophy on life, and I'd love to know when you plan to blog on that topic!

Something else you share in the answers that is especially profound to me is the guidance you'd like to share with those who know someone going through a loss. Having felt deeply hurt (by the reality of having been abandoned by a few and a more general lack of acknowledgment of my pregnancy by some who knew we'd loose our baby, I am so extraordinarily grateful for those individuals who have the depth and character to forge ahead and engage in some sort of acknowledgment of my child and my situation–NOT because it was an easy thing to do, but because it was THE RIGHT thing to do. I specifically remember one instance of a friendly acquaintance, also pregnant at the time I was carrying Gianna, who approached me with comfort, care and confidence in a group setting (play group for toddlers)and gently touched my pregnant swell, smiled and sweetly said "How's the baby?" Kind gestures and acknowlegements of our pregancies when all is right are often taken for granted, yet so desperately wanted and needed when one is trying to make the most of their limited time with their unborn child and craving any possible hint of normalcy possible.

Kathy, thank you so much for sharing. I look forward to exchanging more ideas and insights, and while I'm so sorry that we've both endured heartbreaking losses which are now connecting us, I am so honored to connect with you and the other parents who contributed to __A Gift of Time__. In friendship~ Jennifer, Gianna's Mother (www.rememberingbabygiannamarie.blogspot.com)

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2 Kelly @ Sufficient Grace Ministries March 30, 2011 at 2:33 pm

Kathy,

I could relate to the strong emotions experienced when you first read the book. I think the authors did an amazing job covering the topics thoroughly. But, it is hard to read our words…words from such an emotional and deeply meaningful time in our lives and not feel protective of the way they are displayed. I think I would have felt that way, no matter how much or little was shared of what I said. But, I'm still so grateful to have had the privilege of participating in this worthwhile project…and I'm so glad this resource now exists because of Amy, Debbie, and all of the courageous families who contributed their stories.

Thanks so much for doing this tour. And for sharing your honest, heart-felt answers. I really liked the "advice" you would give yourself if you could go back to the "you" before you received the diagnosis. Great words of wisdom!

Thank you for your sweet comment on my blog, too.

Blessings to you…

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3 Pam McSweeney March 30, 2011 at 4:51 pm

Hi Kathy,
I completely relate to your initial reaction when reading the book; I found myself feeling the same way. I was overwhelmed at the amount of women who had experienced nearly the exact same situation as we had. I wondered, "Where were all of these women 7 years ago?" Now I know that I have them in a forever network thanks to "A Gift of Time".

Your reponse to the final question is intriguing for me, and I'd love to continue conversation on that topic. I consider myself a strong woman of faith, and while struggling with Colm's diagnosis, my pregnancy and his subsequent birth and death, I found myself full of such anger toward God. As a woman of faith, ths bothered me, until a good friend told me, "It's OK; God understands. Even Jesus was angry at His father." I allowed myself that anger and wonder "why" this was happening to our family, especially after two earlier miscarriages. I have found in the years since, that although I still have a feeling of profound loss, I can see the "good" that this has brought to others, through Prenatal Partners, through our family living our life and celebrating Colm's life and the re-evaluation of priorities.

Although we did not have to make any medical intervention decisions for Colm, I agree with you that would have been an additionally helpful chapter/section in the book. I love your idea of sharing the book with everyone who helped you in the medical community. Like you, the genetic counselor we met with told us at the time of diagnosis, "I am so sorry. I have nothing to give you." (this quote is in the book) She had plenty of material to provide if I had chosen to end my pregnancy, but nothing to give me for continuing. My perinatologist and genetic counselor actually thanked us for continuing our pregnancy, because it allowed them to learn more about helping these babies and parents.

Kathy, thank you again for organizing this and keeping us going. I feel so blessed to have met you and other moms through our shared experiences and look forward to contiuing our conversations.

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4 Amy April 6, 2011 at 9:46 am

Kathy, thank you so much for organizing this book tour and for all your thoughtful comments about the book and your reaction to it. I love your idea of making time for "questions" with your son. Such a gentle, non-threatening way to put it. I've shared that with many people. And your suggestion about addressing decisions about prenatal intervention is a good one. I've filed it away in case there's a revised edition in the future. And, finally, thank you again for sharing Molly with us. You are her parents always. Amy

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