Harvey, 4, Everly, 2, Reese, 1
- Who are you Mom to?
- Briefly describe your experience with Everly’s prognosis, birth, and any details you feel comfortable sharing about the time you got to spend with her.
"At a routine 12 week prenatal appointment, while wrestling my tired and crying 1 year old, I learned that my second child had a fatal birth defect. The diagnosis was Anencephaly, a neural tube defect that causes the skull and brain to never fully form. The doctor gave the diagnosis and then gave two options. We could carry the baby to term or we could "terminate the pregnancy early". She recommended the latter, given how obviously difficult the situation can be and how (at least medically speaking) unpromising the outcome was. After an excruciating few days though, we came to the decision to continue the pregnancy and we named her Everly. We decided that she was sent to our family and we were going to make the most of the life she was given. We spent the duration of the pregnancy trying to bring meaning and purpose and joy to her life.
On April 9, 2018 she was born. She entered the world with an overwhelming aura of peace that could be felt by all in her presence. Though her body was broken and weak, it was made beautiful by the incredible spirit it housed within. During her brief time on this earth she was surrounded by family and friends who helped us celebrate her with the love and adoration her perfect spirit deserved. She passed peacefully and discreetly in our arms shortly after her birth but we soaked up every minute of the next 12 hours that we had with her before we had to let the transplant team take her."
- Who or what helped keep you grounded during this challenging time?
"There were three main sources of strength and comfort for me during this experience. The first was my faith. At the time of Everly's diagnosis I slipped into a very dark and hopeless place. When I decided to keep her I pleaded with God for his help because I knew it was a burden too great for me to carry on my own. After that time and throughout my pregnancy and beyond, I felt an almost tangible strength and peace that I am absolutely certain was a divine gift from God.
The second was my support system. Friends and family stepped up in a way that still brings me to tears. We were showered with calls, texts, visits, game nights, laughter, gifts, handmade treasures, flowers, meals, time, attention, babysitting, fundraising and everything else imaginable. There wasn't a thing someone did for us that was not appreciated because every gesture was evidence that they loved us, they were hurting with us and they were there for us.
The last was focusing our energy on finding meaning in Everly's life. We decided that we were #livingforEverly and we would try to find joy in the journey and meaning in the outcome. During the pregnancy we made arrangements for organ donations, organized a virtual race earning $10K for Anencephaly research, and prepared for breast milk donation after the birth."
- How did you balance the needs of your toddler and family while still allowing room for your grieving?
"During the pregnancy I tried to be gentle with myself. I knew I didn't want to let that time be one of darkness but I didn't want to be artificially or inauthentically happy either. I tried to find as many ways to bring joy into all of our lives as possible. This involved a lot of family activities like celebrating holidays, getting outdoors to visit the beach or the mountains or checking out a new aquarium or museum. But I was mindful of my limits as well. I allowed myself personal time to experience joy specific to me or be alone and grieve if needed. I found it helpful to journal and I even started a blog, both of which were very cathartic. Just as with any stage of life, it was all about balance."
- What advice would you give to parents in a similar situation (or really any parent who is dealing with uncertain challenges or loss).
1) "This experience you are having, it is yours to have. And the only person who has any degree of control (however little that may be) in what the experience looks like, is you. I came across a lot of resources during my pregnancy with Everly that said things like "you never really heal" or "it never gets easier but you learn to carry on." For me, I couldn't stand the thought that for the rest of my life I would be walking under the raincloud of this tragedy. Though I experienced much sorrow throughout the trial, I also experienced much joy. Our baby girl has a giant piece of my heart that I will never, ever get back. But wounds have healed. I have learned to live a full and happy life without that piece of my heart, knowing one day I’ll get it back.
2) Find meaning in your suffering, however you can.
3) Take care of yourself. These are special circumstances you are in, which may require special treatment for yourself at times. Indulge. Give yourself what you need to get through this thing."
- What did this experience teach you about resilience?
"I honestly never believed God would allow me to experience a trial as heavy as losing a child because I didn't think I was capable of surviving it. But once I was put in the situation and had no choice but to face it, I realized I was capable of more than I had ever imagined. I leaned heavily on my faith, family and friends and with that support I not only survived it but I was made better by it."
- Update on life after loss:
"We continue to think about Everly every day and we try to find ways to include her in our family every chance we get. When we lived close to the cemetery where she's buried, we would visit her frequently but now that we've moved we have pictures of her up around our home and we speak to our kids about her often. Our son Harvey will talk to her, draw pictures of her and even pretend to play with her.
We also look forward to opportunities to celebrate her. On her birthday we like to have a picnic at her headstone. We eat the foods I craved when I was pregnant, listen to a song our friend wrote for her, read journal entries from her birth and release balloons like we did at her funeral. We also love celebrating Dia de los Muertos. Every year since Everly passed we have set up an ofrenda with photos of deceased loved ones, Everly sitting right at the top. We invite friends over and ask that they too bring photos of their deceased loved ones to put on the ofrenda. Together we eat loads of mexican food and share stories of the people in our lives that have passed. I love that this tradition gives us a chance to honor Everly and it helps the individuals we invite to come to know her better."