Thursday, February 28, 2008

Our story

I was asked by my friend Heidi Vawdrey to write a summary of our entire experience with Candace. She wanted to post it on her website which is designed to help those who are dealing with a second or third trimester loss. I knew how much it helped me to read the stories of others who had gone through similar experiences, so shortly after Candace's birthday I gathered my courage and emotions and wrote our story.

Candace Naomi Carroll
Our Forever Child
February 13, 2007

I chose to announce my pregnancy at 8 weeks to my family while on a ropes course harnessed in and up on a high wire. We were so excited to be expecting again. I had previously miscarried twice, but felt calm about this pregnancy not ending in miscarriage. Because of my previous miscarriages, my midwife scheduled an ultrasound at 10 weeks just to make sure everything was okay. I felt like everything was fine and so decided to go in to this appointment without my husband. I remember watching the screen and my eyes were on that little beating heart. I felt elated that there was a strong healthy beating heart and seemed oblivious to the technician’s reaction to the picture in front of us. She quickly excused herself and went and got a specialist. This is when I clued in that something was wrong. They proceeded to explain to me that our baby had a condition called anencephaly, which is a brain anomaly. It’s a neural tube defect that happens at about 4 weeks gestation when the neural tube doesn’t curl around and close properly. We were told that our baby would continue to grow and develop in utero, but wouldn’t be able to survive very long, if at all, outside of the womb. I was advised to terminate the pregnancy because there was no chance of survival. This was never an option to me. It wasn’t my place to decide when to stop this little one’s beating heart, no matter what the deformity. Telling my husband the news was heart wrenching, and telling our children (ages 7, 5, & 3) was even harder. Thus began our journey.

We decided as a family to celebrate every day we had with this precious baby. Over the next 30 weeks we prepared for the arrival of this little one, while enjoying every flutter, twist, hiccough, and kick. My husband and I drove to different cemeteries in the area, wanting to find a good resting place for our baby before the time came. We counted down the days to find out the gender. On September 7, 2006 we found out that our baby was a girl. Everything was formed perfectly on her. The doctor’s had been concerned about the possibility of a cleft palate, club feet, missing digits, or internal organ problems, as this can sometimes appears in anencephalic babies, but she was perfect from the tip of her toes up to her eyebrows. We decided to send out birth announcements at this time announcing the “upcoming” arrival of our baby and revealing her gender and her name to friends and family. We didn’t want to send out announcements after her birth and have to tell of her death as well. We wanted this to be something happy for people to read and to feel the joy of the journey with us. The announcement read:

Jon and Krista Carroll
are happy to announce the upcoming arrival
of their sweet little angel
Candace Naomi Carroll
with an expected due date of
February 14, 2007

Candace has been diagnosed with anencephaly, which is
an anomaly of the brain. She is growing and developing
normally in utero, but is not expected to live long after
birth. We are celebrating every day of our daughter’s life
and wanted to share our little angel’s journey with you.

We chose Candace for her name because of its meaning. Candace means: flowing white, pure. Her middle name is a Bible name that we love.

Throughout the pregnancy I was working on quilts and two burial dresses. They were two different sizes, but identical. This way she could be buried in one and I could keep the other one as memorabilia. I made other clothes and lots of hats for her as well. I made a quilt to wrap her in, and throughout the pregnancy had any friends and family that wanted to take a turn putting in stitches of love around the hearts on the quilt do so. I also made matching smaller size lap quilts for each of my children, for them to remember Candace by. I bought a small little stuffed bunny for Candace to be buried with, and bought extra for my children and my husband and I to keep.

We received special permission to have our ultrasounds recorded onto a videotape. I had a lot of ultrasounds because they wanted to keep an eye on the amniotic fluid level, which can increase rapidly with this condition and cause problems for me. The technicians were always so sweet and printed lots of pictures off. We even got to use the newer 3D machines and see some great pictures of our baby girl. Our extended family rallied together and we planted commemorative trees in a local park in Candace’s honor. Poems and songs were written. I kept a journal for Candace from the start of my pregnancy, which I continue for her now. I write it in a letter format to my baby girl, as if she would someday read it. I noted every appointment, every kick, every miracle she was a part of (and there were many), every impression that came into my mind and heart. I couldn’t deny the gratitude I felt from my baby for giving her a chance at life, for giving her the opportunity to experience her body, however long or short that might be.

As my due date got closer I made arrangements with a photographer to be at the hospital to catch every moment we had with her. I assigned a friend to the video camera for the same purpose. I had a birth plan given to the hospital staff prior to my due date, so they would know our desires and wishes. I had arranged for another friend, who was a dentist, to come and do her hand and foot molds after she was born.

Usually the mother’s of anencephalic babies will not go into labor on their own, so we had scheduled for me to be induced on Tuesday, February 13, 2007. Finally, her birth date came. We were so excited but sad at the same time. I had a hard time with the decision to induce because I felt I was not only picking her birth date, but her death date. It was a terrible feeling. But I also knew that if we didn’t induce we wouldn’t get the chance to hold her while she was alive and she would eventually die in the womb. The doctors constantly reminded us that there was a very small chance that she would survive birth. They tried to prepare us for her to be stillborn, but we felt calm and peaceful that things would work out. We had our children and family in the waiting room, ready to come in as soon as we sent for them.

Candace Naomi Carroll was born at 6:00 pm. She weighed 5 lbs. 1.5 oz. and was 17 ¼” long. She was beautiful and she was alive! She had survived birth. We were overjoyed. She had a lot more skin and hair on the top of her head than we had anticipated. Actually, the only part of her brain that was outside of the skin was on the very top of her head and it looked like a princess crown sitting right up on top of her head. The area around the exposed tissue on top of her head was very flat and squishy, but she did have skin and lots of dark hair there, which we thought would all be open. The doctor’s had told us that she wouldn’t cry, suck, or open her eyes. They were wrong. She didn’t cry right after birth, but a few times she did let out a little cry. It definitely wasn’t the strong healthy normal cry of a baby, but a cry nonetheless. She nursed a little, but it was exhausting for her. I eventually pumped and she sucked breast milk from a syringe. She did peek open her eyes several times for us and even smiled a few times.

After my husband and I had spent about 5 minutes alone with her, we sent for our other children to come in. It was a magical moment. They were so entranced with her and couldn’t get enough of her. They each had many turns holding her. She would make light puffing sounds when she would breath out and blew a lot of bubbles out of her mouth. The children loved this and it became very endearing to us. She continued to breathe okay and her coloring looked good for the most part, so we invited in our family and close friends. When we saw how well she was doing we let everyone have a brief turn holding her. Eventually, the hour was getting late and our children needed to get some sleep. We said our goodbyes and goodnights, not knowing if she would last through the night.

It was a very long night. It seemed that we lived in 5 minute increments. She would do well and her coloring would be good, then she would turn purple and stop breathing, then she would manage to start breathing again and her coloring would be good again. We had decided ahead of time not to put her on any life support. We didn’t want to prolong the inevitable and have a machine keep her alive if it was her time to go. Throughout the night she had many seizures. These were terrible to watch her endure and we thought we would lose her with each one, but she hung on.

By 7:30 the next morning I called my parents and asked them to bring the children down because we didn’t know how much longer she would be able to hold on. They came and the children continued to hold and love her more. It was Valentine’s Day and being children they were excited about their Valentine’s parties at school and they felt very torn between going to the party or staying with Candace. They chose to go to the party. Candace continued to fight and hang on and we continued to love and cuddle her and soak up every possible minute. The doctors and nurses felt she could continue this up and down pattern for quite some time and we started discussing the possibility of bringing her home. Our 3 year old daughter really wanted to bring her home.

When my older two children returned from their Valentine parties, they were so relieved to see that Candace was still alive. I asked them if they wanted to help me dress Candace in the clothes I made for her and bring her home to our house. They cheered and gathered around her and me on the bed and helped me change her diaper and start to put on her clothes. We sang a song to her while we dressed her. The song we sang was, “I Am A Child of God.” After we finished singing I noticed her coloring wasn’t very good again and called for a nurse. The nurse confirmed that she had stopped breathing again, but this time her heart was slowing down and she was fading.

The moment we had been dreading for 30 weeks was here. It was her time to go and we sensed it. We gathered her in our arms, our children were snuggled in around us and we kissed and hugged her goodbye as her heart beat it’s last beat at 5:13 pm. She lived 23 hours and 13 minutes. We knew this moment was inevitable. We felt it was a miracle to have as much time as we did with her. We just sat and held her for a long time. When we were finally ready to go we received clearance from the hospital to take her home to bathe and dress her before taking her body to the funeral home.

I’ll never forget the car ride home, holding my baby in my arms, smelling her sweet soft skin, caressing her cheek, and feeling my tears spill over onto her face. When we arrived home we bathed her and put on the larger of the two burial dresses that I had made. We put on the cute bonnet that I had made to go with the dress. She looked beautiful. We had arranged for our photographers to come to our home and take some pictures of her for us before her body stiffened too much. This is when we had some of our most precious pictures taken.

After the photographers left, our children were put to bed, and my husband and I were alone again, we held our baby and wept. We wanted to continue holding her all night, but knew we were keeping the funeral home open very late. We finally summoned the courage to drive to the funeral home. Leaving my baby at the funeral home was one of the hardest things I had to do. I didn’t want to be separated from her. We drove home and cried ourselves to sleep that night.

The next couple of days were a blur and were spent making arrangements for the funeral. Our family was very helpful in taking care of our other children while we made the final arrangements. My milk came in during this time. I had decided ahead of time to pump and donate my breast milk in hopes that it would benefit a baby somewhere, and also maybe help me balance out my hormones over the next couple of months. This ended up working out fine in the weeks to come, but during this time of planning the funeral, it was more of a nuisance and a painful reminder. I felt numb and disconnected to the world. I wanted Saturday (the day of her funeral) to hurry and come so I could hold my baby again.

Saturday, February 17th did finally come. It was a beautiful sunny day with blue skies (which is rare for Oregon). Our family dressed in pink in honor of Candace. We drove as a family to the funeral home to pick up our baby, then drove to the church. Our friends and family had made a beautiful memorabilia table in the front entryway. Our photographers had made a slideshow from the pictures they had taken of our time with Candace and put it to music I had previously picked out. It was precious.

We greeted our guests who wanted to see our baby Candace. Then our children held her and kissed her goodbye. I thought my heart was breaking in two as I hugged and kissed my baby for the last time and placed her in her tiny casket. Putting the lid on her casket was the hardest thing I have ever done. It was like closing a door to my heart that could never be reopened until I am reunited with my baby again. Her service was beautiful. This little baby touched so many hearts and lives. She was a miracle.

We convened to the cemetery, where my siblings sang, “The Lord Bless You and Keep You.” We had flowers for all in the group to take turns and place on her casket. It made me smile to see the pile of flowers was larger than her little casket. We had 50 white balloons that we released. It was symbolic for us. Letting the balloons go was like letting her spirit return to heaven. Eventually all had said their goodbyes and left. Our oldest daughter (age 7) wanted to stay and watch the burial. Originally my husband and I had decided that we did not want to stay for this part, but because of our daughter’s desire to stay, we decided to stay. It was emotional to watch, but at the same time comforting to see her tucked into mother earth and peacefully laid to rest.

The butterfly has become our symbol for her. Shortly after Candace passed away our children came up with this beautiful butterfly analogy. They explained that when she was in my tummy she was a caterpillar, and when she was born she was in her chrysalis because she couldn't move around very well in her body. Then when she passed away, her spirit was set free and could fly away to heaven, just like a butterfly.

It’s now been 1 year. We celebrated her 1st birthday by writing little notes and putting them in white balloons and releasing them by her grave. We snuggled together in blankets by her graveside and recounted favorite memories with her. Our children enjoyed decorating her resting place for her birthday and also for Valentine’s Day. We returned home to have birthday cake and surprised the children with a gift for each of them, instead of for Candace. Our home and front yard is decorated with little butterflies here and there as precious reminders of her. We have sweet memories of our baby Candace and her journey, and even though we miss her terribly, we know we will see her again. For this we are so grateful. Our family grew so much from this experience. Our relationships are stronger, our desire to be better is stronger, and our faith is stronger.

Even though I never want to go through this again, I don’t regret our experience or wish to change anything that happened. I’m so grateful we continued on with the pregnancy. It makes me shudder to think of all the sweet experiences and memories we would have missed out on. After all, some people only dream of angels, but we held one in our arms.

Happy 1st Birthday Candace!

Our family enjoyed celebrating Candace's 1st Birthday. We wrote little notes, and put them in balloons and filled them with helium. We went to her graveside, excited to surprise the children with her new grave marker that was just finished and put in the previous week. We laid down a tarp (the grass in the winter is so soggy), and sat on the tarp, wrapped in blankets recounting memories of our time with Candace and singing songs. The children had fun decorating her little spot for her birthday and Valentine's Day. We finished off with singing every birthday song imaginable and releasing the balloons. We returned home to celebrate with a birthday cake and presents. Yes, the children were confused about this and why Candace was being given gifts. They all quickly figured out that she wasn't receiving the gifts, but that they had each received 1 simple present, something for them, rather than for Candace on her birthday. It was a fun twist and surprise.

We have been so blessed to be remembered by so many. Our porch has been the landing spot for so many notes, cards, plates of goodies, butterflies, butterflies, and more butterflies. I can't remember if I've shared the significance of the butterfly, but here's a brief catch up. A short time after Candace passed away the children came up with an analogy of Candace and a butterfly. They explained that when she was in my tummy she was a caterpillar, when she was born she was in her chrysalis because she couldn't move around very well in her body, when she passed away her spirit was set free and could fly away to heaven just like a butterfly. So, there you have it. We have pink butterflies in various locations around our house as sweet reminders of our little Candace, and now our yard and front porch have been decorated with butterflies by sweet friends. We are well taken care of, and with each gesture we are reminded that Candace hasn't been forgotten.

Friday, February 15, 2008

"One Tiny Miracle" video

This five-minute video features photos from Candace's life set to the song Angie Liddell and Julie Hancock wrote for Krista. It captures the sweetness of our daughter's spirit, our love for her, and the faith we have that one day we will be together again.

A Season of Joy: The life of Candace Naomi Carroll

In the scriptures it is written: “Remember the worth of souls is great in the sight of God…And if it so be that ye should labor all your days…and bring, save it be one soul unto me, how great shall be your joy with him in the kingdom of my Father! And now, if your joy will be great with one soul that you have brought unto me into the kingdom of my Father, how great will be your joy if you should bring many souls unto me!” (Doctrine & Covenants Section 18, verses 10, 15, and 16.)

Candace Naomi Carroll was born on February 13, 2007 and passed away the following afternoon. Though her life on earth spanned just a few hours and her time in her mother’s womb just nine months, her righteous spirit radiated powerful, everlasting joy. From the first moments of her development to her last living breath, this valiant daughter of God taught all who knew her about the true peace and happiness found in our Heavenly Father’s Plan of Salvation. How wonderful it is to know that Candace now lives in peace and perfect health with her Heavenly Father and other close family members. Candace is survived by her parents, Jonathan and Krista Carroll, her older siblings, Shaylin (7), Zachary (5), and Hailey (3), and a large and loving extended family.

In the early weeks of her development in utero, Candace suffered a neural tube defect called anencephaly that prevented her skull and brain from developing normally. Her parents chose to allow the pregnancy to progress, fully aware that this condition would not allow Candace to live more than a few hours after birth. They believed fervently that the nine months Candace spent in her mother’s womb would fulfill her need to experience mortality.

Those months were tender for Candace’s parents and siblings. Her family celebrated every kick and wiggle. They cherished each ultrasound view of their baby girl. They mailed birth announcements to their family and friends, made burial clothes, stitched blankets, planted trees, and selected keepsakes. Although these actions were tinged with sadness, each opportunity to celebrate her life drew her family closer together. Through it all, they felt Candace’s gratitude for being allowed to experience a physical body, even for such a short time. All who witnessed the incredible, yet willing, sacrifice Krista made to carry Candace to term can testify of the love she felt for her special little daughter and for her Heavenly Father. Krista often shared that giving Candace the gift of life was an honor, and she spoke fondly of the thankful spirit Candace radiated. That warmth calmed fears, healed hearts, and offered hope for the future.

Once Candace’s amazing spirit comforted and blessed her family, it seems she set out to proclaim that her beautiful soul was not the only one worth saving. Countless others drew strength and testimony from her righteous parents, who showed implicit faith in the Plan of Salvation. Their every action affirmed their conviction that families exist eternally, that Candace will be their daughter forever. Jon and Krista had several opportunities to discuss their testimonies regarding the sanctity of life with friends of other faiths. A family who lost their father in an accident drew strength and peace from Jon and Krista’s belief in life after death and the eternal nature of families. The Carrolls rejoiced when they learned that their experience with Candace influenced another couple to feel joy in their unexpected pregnancy, thus allowing another choice spirit to experience life on Earth. On the day Candace was born, the mother of this family found herself in preterm labor and checked into the hospital down the hall from Krista. It seems these two little souls wanted to be close on Candace’s special day.

Other miracles happened as the spirit of the Lord worked mightily to bring Candace’s story to light. In the early months of her pregnancy, Krista yearned to write a song that shared her feelings about Candace’s life and death. Though she tried many times, the process was too emotional. She began praying that someone else could write the song of her heart. In September, not knowing Krista’s wishes, two special angels went to work. Julie Hancock first received the inspiration through whispered words in the temple. Later, Angie Liddell felt a flood of lyrics and heard melodies and accompaniments in her mind. After hours of composition and more than one sleepless night, the collaboration was complete. When Angie and Julie presented their music, entitled “One Tiny Miracle,” Krista knew her prayers had been answered. The song’s lyrics, which we will be privileged to hear in a few minutes, clearly share the deepest feelings of a mother and daughter bonded eternally.

Krista was blessed to meet Sister Bonnie Parkin, General Relief Society President of the Church, at a regional Relief Society meeting. During their brief greeting, Sister Parkin inquired about Krista’s family. She probed for information, sensing Krista’s hesitation to share the news of her unborn daughter, which was then very fresh. Upon hearing about Candace, Sister Parkin poured out a spirit of comfort and hope. She said that Candace’s short life would be a blessed and joyful time, despite the sorrow and pain. She promised the family would grow and their testimonies deepen because of this experience. Her perceptive, insightful comments offered great peace.

Just before Christmas, the church leaders overseeing Krista’s parents’ mission in Africa, including the mission president, the area authority, and Elder Henry B. Eyring, were inspired to grant Elder and Sister Flake an early release. Returning home two months early allowed them to enjoy the holiday season with their children and prepare for little Candace’s arrival. What a blessing it was for Candace to meet all four of her loving grandparents, as well as several aunts, uncles, and cousins. The way Heavenly Father watched over this family and made such an opportunity possible affirms His great love and the worth He attaches to one little soul.

Shortly after she was born on Tuesday evening, Jon gave his sweet baby daughter a name and a blessing. Jon and Krista selected Candace for its meaning, which is “flowing white; pure.” In addition to being a lovely biblical name, Naomi means pleasant and beautiful. These names truly describe such an angelic little girl. The veil separating this life from the next was very thin as Jon blessed Candace to have a peaceful, joyful experience during her short life and charged her to go forward with the mission Heavenly Father had prepared for her. Candace lived for nearly 24 glorious hours, giving her family precious time to hold her, love her, and talk to her. She passed away at 5:13 p.m., nestled in her mother’s loving arms and surrounded by her family.

1 Thessalonians 3:9 offers a fitting tribute for our little Candace this day. It reads: “For what thanks can we render to God again for you, for all the joy wherewith we joy for your [sake] before our God.” Truly, we have joy for the miracle of Candace’s life. The short but intense mission Candace had on this earth was, in itself, a miracle. That she breathed, opened her eyes, cried, nursed, blew bubbles with her lips, and looked so pink and beautiful is a miracle. The way she touched so many lives is a miracle. The way she helped so many learn of and remember the true plan of happiness is a miracle. That this time of sadness has also been a time of celebration and peace is a miracle. Though her family and friends are very sad to not have the opportunity to know Candace now, we feel great joy and calm reassurance that Jesus Christ is real, that Heavenly Father is watching over us, and that Candace and her journey are all part of His eternal plan.

To Hailey, Zachary, Shaylin, Jon, and Krista: thank you for sharing her journey with us. We all find comfort in your endless faith, your firm testimony, and your incredible love. Your precious angel has touched our lives in so many ways. Candace reminded some that birth and life truly are miracles. She taught others to give freely of their time and talents. Candace taught all who knew her that Heavenly Father does love and listen to his children’s heavenly pleas. He answers prayers! Candace offered hope to those whose situations in life seem unbearable by reminding them to endure, have faith, and look to the future with joy.

As we celebrate her short earth life this day, let us embrace the reality and sacred nature of Heavenly Father’s love for us. As we move forward, let us all learn from Candace and find the joy in our own journeys.

Note: This life sketch was written and delivered with love by Heidi Bartle at Candace’s funeral on Saturday, February 17, 2007.

Candace's Journey

One year ago this week, a special little girl named Candace Naomi Carroll was born. She only lived a mere 23 hours, but she will forever be in our hearts. We set up this blog to celebrate our daughter the week of her first birthday.

We would like to share this video that chronicles Candace's short time on earth, from her months in utero, her single day of life outside the womb, and her funeral later that week. Please enjoy "Candace's Journey" with our family.