5 years ago, my sweetheart and I embarked on the great adventure of marriage. We planned our family, and have stuck to the plan. We now have two awesome boys, and the daily experiences that come with raising children. And as we prepared for our third child, we were even more excited. We were told by the ultrasound technician that we would be having a girl. Finally, a little girl.
This was monumental news for us. I grew up in a household with 4 brothers. Our only sister, Elizabeth, died when she was just a toddler. So my whole life has been void of much of the tender sweetness that girls bring. I was finally going to have a daughter, a little princess to spoil and love.
We named her Abigail–an old Hebrew name that roughly translates as “Her Father’s Joy” or “Fountain of Joy.” As members of the LDS church, my wife and I have a firm belief that we, as people, lived together before coming to this world, and that this baby in the womb is just as much a living person as anyone else. We speak to her, pray for her, and view her as our child, even before she has taken her first breath.
My wife and I set about planning our lives as they would be with this new baby. We moved to a new place and rearranged the rooms, so that she would have her own bedroom. We shared our good news with our family and friends. We even began gathering clothes, blankets, and other things for her. We told our boys to expect a little sister soon, and explained that she’s in mommy’s belly. Our little family was eagerly awaiting Abigail’s arrival.
Then, we heard the news.
My wife’s routine second trimester ultrasound revealed that Abby has a rare, non-genetic condition which will dramatically hinder the development of her lungs. This means that once Abby is born, she will live only a few hours–or possibly a few days. The doctors were very sympathetic, but very clear. There’s nothing they can do. There’s nothing we did wrong. It was just a very unfortunate circumstance that could not have been prevented. Our time with Abigail is going to be very short-lived.
This news has rocked our world . The first few nights were especially difficult, as we felt Abby’s little kicks. All of the pregnant lady jokes that I would lovingly tell my wife now had a sting to them; I couldn’t even think them without being hurt. I remember sitting in our chapel just days after we got the news. We sang the old Lutheran hymn, “Be Still My Soul.” The words had never seemed more relevant to me.
As the first few weeks passed, we began planning for what I could only call “The Event”– the day where we would see our little girl born, live out her complete mortal existence, and then die just as she had come. We began working with a fabulous group called “Angel Watch,” which is a small organization of professionals who help families deal with what they call “Anticipatory Grief.”
Anticipatory Grief
I’ve dealt with grief before. Plenty of it. I’ve been through the loss of several family members and close friends–many who went long before their time. It’s never easy, and it always requires some time to work through. But anticipatory grief is completely new to me.
This type of grief is really what it sounds like. Essentially, it’s the feeling that comes when awaiting a loss. Most people experience this when a loved one is hospitalized or terminally ill. For us, it’s a little different. Our day-to-day life is pretty much the same. But the feelings that usually accompany the death of a loved one are hitting us now, before our loved one has even been born.
It’s been a roller-coaster of emotions. But in the end, we feel grateful that we have the opportunity to accept and embrace this loss so early. Now all of our attention is set for the day she comes. We still have several months to think about it and plan for it.
For me, part of embracing that moment is writing. I’ve been compelled to share my experience since I first heard the news. I hope that my words are enough to help someone else who is going through something similar.
I originally titled this post “Sunset,” because I felt like it was a good analogy to what Abigail’s life would be. Sunsets are beautiful, but brief. There are few things more marvelous than a beautiful sunset–that small window of time when rays of light from the sun are bent by the earth’s atmosphere, revealing a palette of colors and tones that before went unseen. And part of what makes a sunset so special is that each one is completely unique. No two are the same, yet each one of them is just as brilliant as the one before.
The sudden nature of sunsets also something that makes them so special. You have 24 hours in a day, but only a few brief minutes of a full, twilight sunset. Once a sunset goes it’s gone, living on only in memory. While we can anticipate the event day after day, we only get one chance to actually experience and see it firsthand.
My experience with Abigail will be just like a sunset. I have many years of life, but only have a few hours with her. Those few hours will be marvelous, beautiful, and completely unique. I look forward to seeing her beautiful light shine and to embracing the tender moments I will share with her.
Such a beautiful post, brought tears to my eyes and my heart aches for your family!
But your words have brought me hope and inspiration to start experiencing life to its fullest and take in every brief sunset!!!!
Thank you so much Evelyn. I truly hope that our experience can help lighten the load for others going through trials. Your thoughts are comforting to us.
I am so sorry that Abigail has received this diagnosis, and I hold her and your family in my heart. Five years ago, our family had a similar loss. At a 20 week ultrasound, our son was diagnosed with a bladder obstruction that affected his lung development. He was born at 37 weeks and lived for three amazing hours. Being with him on his journey was one of the most difficult and most powerful experiences of my life, and I will always be thankful for the opportunity to be his mom.
You may be aware of these resources, but if not, I hope you do not mind if I share them with you. The memoir, Waiting with Gabriel by Amy Kuebelbeck, is written by a mother whose son was diagnosed with a fatal heart condition while in-utero. The organization, Now I Lay Me Down to Sleep, connects volunteer professional photographers with families who have suffered the loss of a baby. A NILMDTS photographer captured images of our son, which have become a family treasure. And there is an organization called Cherishing the Journey, which provides support for families who are anticipating the loss of a child. It was founded by a friend who was pregnant at the same time as I was and who also lost her son.
Thank you for sharing your experience, and I send you thoughts of peace.
Kelly Hauser, thank you so much for sharing your story. I know it’s very hard to talk about little loved ones lost. The more I share my story, the more I find people who have gone through similar trials. This gives me assurance and hope for all of us. Also, thank you for mentioning those resources. We have that book and NILMDTS is scheduled to do the photos for us. If you’re still in touch with someone at “Cherishing the Journey” have them reach out to me. I would love learn more about them and share what they do with others as well.
BEAUTIFULLY written Steve … my prayers are with your family … May the love of God fill all of your hearts …
Thanks Jim, your prayers are felt and truly help us. God has definitely filled our hearts with his joy.
This was a wonderful message to share with everyone. We are so sorry you and your sweet wife and children have to go thru this. Sharing your thoughts of sunsets is very special and you are so nice to share it with all of us. Our thoughts and prayers will be with you.
May we pray and believe together God can and will Heal your baby girl
Jack Oliver Thank you so much for your faith and your heartfelt charity. In all honesty, if God wants Abby to live longer then His will be done. If the Almighty calls her back His presence after only a short time, then we are okay with it. I know that He has power to do all things and truly desire to be humble and accept His will. He may or may not heal our baby, but I know that through Abigail, God will heal us!
I LOVE your perfect submission to God’s will. So Christlike in that even though He faced certain physical torture and death, He asked for it to not be so, but if it had to be, then Gods will be done. Your faith is not only encouraging, it’s amazing. Prayers for comfort to you and your family.
Thanks Uncle Louis for your kind words. Your prayers are felt and we really appreciate it.
Thank you for sharing your life altering journey with us. It touches my heart deeply as of March 24th it will be 18 years since we were priveledged to welcome our first grandchild, Vivian, into the world. We learned she had anencephaly at the 20 week ultrasound. Her aunt was with her mother when they got the news. It was a life altering moment for both of them.
The joy of her little kicks and her daily rythums took on a whole new level of meaning as we knew it was the only time we would really have with her. Her mother requested only the best of music and entertainment in her home. It became a more sacred space. The little things that would normally irritate just rolled off our backs as we had more important things to prepare for.
She was not expected to survive her birth but she was strong and lived to recieve her name and a blessing from her grandfather and bishop and graced us with 45 minutes of tenacious life. We held her and admired her features and told her how much we loved her. The hospital staff was wonderful.
Our grandchildren number 20 now with a new one anticipated in May, but our Angel Vivian is always counted and remembered. Her 16 year old sister and 10 year old brother know their big sister Vivian is there watching over them and waiting for them to join her someday.
It is great to hear about the support groups for Anticipated Grief. It would have been very welcome in our lives. You and all your family will be in our prayers as you await your angel Abigail’s brief visit.
Thank you so much for sharing Melinda Sandberg! It must be very difficult to see your grandchild pass so early. Not only are you losing the company of your first grandchild, but you had to see your children suffer through it as well. I know that this has particularly hard for my parents. Even after losing their own child, they hate to see my wife and I go through that same pain even more.
It was such a great idea to make the time spent with Vivian sacred and I’m so glad that you guys had the chance to bless her. Our attitude is very similar. Much of what we’re doing is preparing to receive her and cherish our moments together. We also want to pay homage and honor her body. Even though it is only a temporary vessel for her spirit at this time, we know that one day she will take it upon her again.
Thank you so much for opening your heart and allowing us to share in a part of your experience.
Every Sunset is different in its own way and you have blessing to see this special Sunset, yes, for just a short time until you see her again. God bless you and your family.
Keri, thank you. I know that this short time will be intense and ultimately too brief, but it will surely be one of my greatest memories forever.
Very beautiful post. Thank you so much for sharing your heart with all of us. I will pray for you and for your sweet family. I am also LDS and I am so grateful for the Plan of Happiness. My husband has cancer and I can really empathize with what you are talking about with anticipating a loss. I pray for a miracle, but I know it is all in the hands of the Lord. Praying for peace and comfort to fill your home at this time and always.
Brianna I’m so sorry to hear about your husband. That is a pain that no couple should have to endure. Hang in there and, like you said, remember God’s plan of happiness. Even the most intense pain and suffering that we can experience is only a small moment in the grand scheme of eternity. Keep praying and remember that with faith, all things are possible. My wife and I always try to remember that sometimes God calms the sea, other times He calms the sailor. Our prayers will be with you and your family as you grow together through this trial.
Thank you for sharing. I am considering whether knowing ahead of time is a blessing. My husband and I experienced a brief time with a boy and girl that we had, a set of twins. Because of a condition I have which causes me to dilate in the second trimester, our twins were born at 22 weeks. It was sudden, we did not know before I began labor that I had this condition. I was in the hospital three days before they were born, That is how long we had to get used to the idea, and try and deal with it. When they were born, their lungs really had not begun to develop at all and they passed away in a few minutes. I really wish we would have had a few more minutes, or hours to spend with them. In many ways you are very lucky, to have time to prepare yourselves, and to have a few hours to spend with her. I hope that you don’t experience the level of grief that we did, it was very tough, tough in a way that surprised me. I still have a hard time talking about it, I haven’t really been able to blog about it, or talk about it much, I admire your willingness to share. Now we have two little boys, ages 4 and 2. I am lucky to have my little boys. My older boy was born on the twins second birthday, about two weeks early, I feel like this was a message from the twins and maybe God, an effort to turn this day of grief into a day of joy. Anyway, thank you for your thoughts, and I wish you joy as you spend time with your daughter
Shura I am so sorry to hear about your loss. We certainly feel like knowing ahead of time is a blessing. I can only imagine how intense it would be for me to find out after she was born. While the anticipation aspect takes it’s toll, we at least know what the likely outcome will be. We’ve had time to talk, write, think and share. I am very grateful to the docs and their ability to tell us beforehand.
I really appreciate you sharing this difficult part of your life. I understand how it is to talk about a lost loved one. It took me weeks to write this article because it just so overwhelming. But I can honestly say that writing it has blessed me. It has helped me express my feelings and, more importantly, it has allowed me to learn about others, like yourself, who have suffered as well. Your courage gives me strength.
No doubt your oldest being born on that day was a token of God’s love for you. I look at my little boys and have realized that their lives bring me joy. Abby would not want her daddy to suffer and turn into a sour recluse (which was all I wanted to do). She wants me to be happy.
I am not religious, but I pray the doctors are wrong and that the little girl who is already loved as every child should be will have a longer life than they predict. Thinking of you and Abigail in your time of travail.
photographybyodille. thanks for your thoughts and kind words. It would be awesome if the doctors were wrong and Abigail stayed with us longer. But even if that’s not the case, Abigail has done for me already than I could ever hope to do for her. God knows my pain, He sent His own Son to suffer and die for me. God’s empathy knows no bounds and His spirit has been an inner light during our time of darkness.
Thank you so much for reading and commenting. Knowing that we are in your thoughts reminds me of how much good there is in the world. (Sidenote: I visited your page and you have some excellent photography skills)
I am sorry for all of you. I will pray for you and i am shure that Heavenly Father will give you the help und strength you need. He loves you and loves your little baby girl and will take good care of her and of all of you.
Rocky, you said it perfectly. Heavenly Father has blessed us and is giving us help every day. I know that even though my time with Abby is short, she’s going to be in His hands…there’s no place I’d rather have her be.
Thank you so much
I cried as I read your post. Our daughter was happily awaiting the birth of her 3rd child, first son, but her water broke at 21 weeks and she delivered him last Friday at 23 weeks. He lived for almost an hour. As hard as it was, we were grateful for the many tender mercies that the Lord gave us and we are so very grateful for the knowledge we will have him forever. If you look for the tender mercies you will see them all around you.
Pam,
Thank you for your kind words. It’s been two months almost to the day since Abby visited us. Her life is so meaningful to us all. It’s been healing for me to revisit me past thoughts, reading your comments help cherish my time spent with her.
Steve and Miriam, I had no idea. I am truly sorry for the path you have to travel with this. Loving and losing is a heart wrenching combination. I hope that you will be able to spend as much time with Abigail as possible so that you will have some sweet memories to have and hold to last you until you get to see her again. Abigail could never have hoped for better parents than you and Miriam, even if it’s just for a short time. You will all be in our prayers.
Thank you guys so much for your support. It’s been a two months now and it’s strange how it seems so long ago and yet, so recent. It has been very helpful to feel your prayers and that same peace is carrying us today. Thank you guys so much!
AMAZING…that is what you guys are!! Thank you for your example, for your perspective, for your faith and strength. I look up to you.
Thanks Bryce. Really we are nothing special. It’s been God and Abby that got us through this. It’s been two months now and she has been inspiring us the whole way. The strength that we have received has come from Him.
Like a sunset, glorious, yet brief;
I live daily for her one day.
Though with anticipatory grief,
She will live in my heart always.
Sunset: My Experience with Anticipatory Grief
I feel this anticipatory grief. Why does it help to put a name to what you are feeling? Thank-you! I have a family member that just found out their first child will not make it past the first day, having anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD).
Lilly,
that is a beautiful poem. I’m so sorry to hear about your families trial. Abby visited us two months ago. It seems like a long time but our emotional wounds still feel very fresh at times.I would love to hear more about your families experience. It’s been helpful to see others and learn from them.
Me enteré de esto justo un dia después que falleció mi primito y sentí mucha mas tristeza de la que ya estaba pasando. En verdad lo siento mucho James, aunque uno se prepare para este tipo de perdidas la verdad es que uno nunca esta preparado. Se que las palabras de consuelo salen sobrando. Un abrazo enorme para los tuyos.
Carmen,
Muchisimas gracias por tus palabras. Se me ahogo la tristeza al oir de tu primito. Como dijiste no se puede preparar para algo asi. Espero q la luz y paz de Nuestro Padre Celestial permanezca contigo y con tu familia. La verdad es q sin tener la seguridad del poder confirmado q se encuentra en las ordinanzas del templo. A Abby le pusimos el segundo nombre “Elizabeth.” Un nombre hebreo q significa “Juramiento de Dios” Es Su gran promesa q nos ha sosntenido.
Como le ha pasado a ustedes? Para nosotros, esto nos ha afectado a toda la famila. Me ayuda aprender y compartir con otros. De hecho estaba obrando en una version espanola para mis posts. Voy a sacar un nuevo post en unos dos-tres semanas. Te digo cuando salga.
Muchas gracias por tu ejemplo y amistad en mi vida.
This is a beautiful post. I had just stumbled upon this while being redirected from Huffington Post, and I’m glad I did. I just lost a baby last month and the pain never gets easier. she died in utero after a painful 6 days in the hospital trying to get my blood pressure down, due to preeclampsia. Thank you for writing this, and I’m so sorry that you and your wife have to go through this.
Thank you so much for reading this and sharing your feelings. I am so sorry to hear about your loss. I hope that your physical health is well and I truly hope that Abby’s story helps you in someway. It has blessed me to see others who can share in the unique pain of losing a child. I know that Abby is, and will always be, part of our family. The same is true little girl.
Stay posted on the blog, I have a new article coming soon here that explains more about Abby’s short lived visit and how she is changing our lives.
Thank you so much for sharing. really blessed!