I listened to her message on the way home from a vacation in the mountains. When I called her back, she didn’t answer. I left a message. And, called again a few days later. Because I know the courage it took for her to pick up that phone and make the call to ask for perinatal hospice support.
The first time I met her, she pulled out the copy of A Gift of Time I had given to her through another SGM Volunteer months before. So many pages marked with colored tabs…pages that spoke to her mama heart. We call her Amazing Amanda. Because she is. Amazing. And so are the sweet baby girls who were still swimming around in her womb the day I met her and her husband Travis.
She was carrying twin daughters, and one of them (Scarlett) had been diagnosed with acrania, a life-limiting diagnois. To further complicate the situation, the girls were monochorionic and monoamniotic, contained in a single chorion and amnion, also known as Momo twins. Due to these conditions leaving the girls susceptible to a myriad of possible complications, they were closely monitored throughout the pregnancy.
It was important to Amanda to plan every detail of her time with Scarlett and Vivienne. Planning was a comfort to her. Planning gives parents back some of the control they have lost with a difficult diagnosis in pregnancy. She was very private, and needed to experience her journey on her terms in the timing she was comfortable with each step of the way. During her pregnancy, only a select few were told about her babies’ condition.
“We wanted to celebrate their lives while they were with us. This wasn’t the time for grief and sorrow. That would come later. Right now, they are with us; living,” Amanda shared.
Many families facing a life-limiting diagnosis for their child face regrets for missed opportunities to make memories with their babies. Not the case for Travis and Amanda. They made sure that every moment was filled with love. Amanda and Travis wanted to truly cherish the gift of time they had with their daughters.
Scarlett and Vivienne’s Comfort Bears from SGM were a special way to reveal the big news!
Throughout the journey, the family rejoiced at each goal set…and met. To give the girls the best chance of optimal health, the goal was set to carry them to 32 weeks unless they showed signs of struggle before then. Amanda spent the last eight weeks of the pregnancy away from her husband and other two children at a well-equipped hospital two hours away from home. The staff celebrated each milestone with the Mangas family.
Some of the planning included funeral planning, announcements, pictures, writing of the obituary, as well as what her baby girls would wear, what photographs would be taken, special mementos, etc. As we met to plan the time Amanda and Travis would have with Scarlett and Vivienne, Amanda loved the idea of using her own wedding gown to make identical dresses for Scarlett and Vivienne. One of our SGM seamstresses, Tracey Schwiebert worked to make the gowns in different sizes in case the girls were born before we expected.
It was such a blessing to be able to hand the beautiful gowns to Amanda on the day the girls would be born via the scheduled C-section. Amazing Amanda and her amazing daughters made it to their goal. You can see the sense of peace and accomplishment on Amanda’s face as she held the gowns in her arms. It would not be long before she would hold her precious girls.
The day had finally arrived, and we were honored to walk with Amanda and Travis every step of the way. Erin Foster, SGM Remembrance Photographer and owner of Irish Eyes Photography met me at the hospital to help capture the images that so beautifully tell this family’s story.
Pastor Tim traveled to the hospital to pray with Amanda and Travis, to sit with the family, and to pray over sweet Scarlett after her birth.
Nurse Tammy has walked this journey with Amanda since the first day the Travis family heard the news that this pregnancy was not going to go as originally planned. After working her shift, she slept for a couple hours and stayed at the hospital to join the family so she could serve as Scarlett’s personal nurse. Pictured below, Tammy comforts Amanda as she hugs her son before being wheeled away for surgery.
Both girls were born alive. Vivienne was taken to the NICU where she responded extremely well, breathing on her own, like the fighter she is. Scarlett passed away in the arms of her mother. It was time to soak in every memory of Scarlett, time to celebrate her life.
I had the honor of singing Amazing Grace over sweet Scarlett. Helping to bathe her. Dressing her. Placing her beautiful bracelet made by Marlene (another wonderful SGM Volunteer). Taking her footprints and handprints.
The journey of this family and these sisters, Scarlett and Vivienne, is a picture of weeping and rejoicing. The love that filled the room for every moment of Scarlett’s life and beyond was beautiful and sacred. That love is carried on in each of them and in the life of Vivienne. It was such an honor to walk with this family, to share in the miracle of the life of both of their daughters. And, to celebrate with them.
I was honored to sing Amazing Grace once more at Scarlett’s memorial service.
“Scarlett and Vivienne’s birth was filled with much joy as we kept moving forward no matter how hard we wanted time to stand still some days. With out Sufficient Grace and the wonderful services, friendship and assistance offered to Travis and I, I know our road traveled would of been much harder to navigate. Thank you. That pain we felt at her passing, was eased as we instead turned grief into love in celebrating Scarlett’s life with us. You truly are one of God’s Angels.
*This story was shared by Kelly Gerken, SGM/SBD with the permission of the Travis family.
Maternity photos by Jessica Carpenter
SGM photos by Erin Foster
Cell phone pictures shared by the family of Scarlett and Vivienne