Worth It: Our Journey to the Finish Line
Worth It:
Our Journey to the Finish Line
In the weeks just before my induction date, I started to go back and forth in how I felt about the timing of things. On the one hand, the Polyhydramnios was making me so unbelievably uncomfortable that I wanted the delivery to just come. But on the other hand, I knew that once the delivery came, that meant Everly was gone and I felt this sort of preemptive guilt for not appreciating her enough while she was inside of me. I began to drive myself crazy, bouncing between these feelings.
And then a few days before Everly's birth, just as I was reaching the peak of my crazy, family started arriving in town. I was a little worried about having so many people around while I was dealing with all that stress, however it turned out that being surrounded by family was exactly what I needed to escape from my anxiety. There were a few tears shed but it was more smiles and laughter than anything as we all gathered together and prepared to meet our girl.
At 9:02 am on April 8th I was getting situated in my hospital bed, ready to start the induction process. Little did I know at that time, the delivery wouldn't actually happen for another 24 hours. Exactly 24 hours, actually. The whole thing was so much different than the timeline I had in my mind. I guess that's what I get for going into labor with a timeline... I took 20+ hours to progress from a 1 to a 3 and 2 hours to progress from a 3 to a 10. And then I pushed for just 4 contractions as opposed to the 35 min it took to deliver Harvey.
With how abruptly things picked up speed, I was feeling really unprepared. Unprepared to start pushing and equally unprepared for the delivery to happen so quickly. I was so tired, I didn't know if I had the energy to push. And it wasn't just the pushing I didn't have the energy for. Pushing meant Everly's birth and Everly's birth meant Everly's death. I was terrified. It still amazes me though, as I look back on that whole scenario, how all those feelings of nervousness and adrenaline were wiped away the very instant she arrived. Everly brought with her a peace and tranquility that I swear could have steadied a storm.
Before she was born, I would sometimes try and picture the moment when I met her. But every version of that moment that I imagined was so much different than the reality of it. And so much worse. I always anticipated this emotional tug of war between the joy of meeting her and the sorrow of losing her. In reality, there was no tug of war. There was the joy of meeting her, but in place of sorrow there was peace.
The moment they laid her on my chest, I felt that peace. Real, powerful, almost tangible peace. I don't think I'll ever have the right words to explain what happened in that moment but it was like our souls connected. There was peace and there was understanding. And so many feelings. Deep, deep feelings. Feelings of instant and profound and eternal love, feelings that everything was as it should be, feelings of overwhelming gratitude that we had made the choice to give Everly this life and that we had the honor of being her parents. So many feelings. But not in a hectic, overwhelming kind of way. These feelings all came in a way that was still and quiet and peaceful and beautiful and powerful. They came in Everly's way. In that moment, it was just me and Everly and I fell so deeply in love with her. In that moment, I knew any sacrifices we had made up until this point were so beyond worth it to have this precious, perfect soul a part of our eternal family. Every tear, every frustration, every ounce of pain was worth it. For me, that moment set the tone for the rest of the day and it has carried me through every day since.
After a few minutes I handed her to Matt so he could hold her while I got dressed. He looked at her with all the love and adoration of a proud father. I don't know that I've ever seen a love so pure and so intense as what I witnessed between those two. I quickly put a robe on and then they returned her to me and started checking her vitals. I watched as the NICU nurse held the stethoscope to her chest and stared at the clock. I was sure she was watching the clock long enough to be able to pronounce her as having passed. Instead she gave a number for her heartbeat, which was actually a pretty impressive heartbeat. A few minutes later though, the nurse checked it again and said it was weaker and it was then we knew our moments with her were limited. This time is still so surreal for me. It seems so frightening and so sad on paper but it didn't actually feel that way at all. The joy of meeting her and the peace of her sweet spirit were so strong, it's like they permeated that room and then refused to quit.
Because she was so subdued from the time she was born, it's unclear exactly when she passed. It wasn't the dramatic and heart wrenching climax we were fearing it would be. It happened silently and peacefully while we held her in our arms, admiring her and talking about how much we loved her. The feeling in the room of peace and joy remained long after she passed and I am whole heartedly convinced it's because her spirit left her little body but it did not leave that room.
We spent some time together, just the three of us. I squished her little bum, we kissed her pouty lips, we stroked her perfect little hands and admired her long legs. It was so sweet. I remember being so nervous about the way she'd look. I knew she'd be missing the top of her head and her eyes would be bulging and my shallow self wondered if this would be scary for me to see. I should have known better. I should have known a mother's love would find beauty in any deformity but I didn't know better and I was nervous. When I saw her it took a minute to process all her unique features but I knew instantly that none of it mattered. I can honestly say she's the most beautiful little girl I've ever laid eyes on. And this felt like more than just a mother's love seeing her child's beauty. It felt like her spirit was just so exceptionally beautiful that it radiated right through those imperfect little features, allowing everyone who met her to see that same beauty that I saw in her.
After having some time with just the three of us, we invited our family and then some of our friends to come and meet her. I watched as each person came in and greeted her with so much love and admiration. Each and every one of them was like an angel, bringing with them an increase of light and joy into the room. I just kept having the Christmas hymn lyrics play in my head "oh come let us adore Him [her]" because it felt like this crowd of people that came to admire Everly were treating her with the reverence of Royalty. The only exception was Harvey who treated her with the tough love only a big brother could get away with.
As soon as everyone had arrived, Matt and thirteen other priesthood holders gathered around to give her a beautiful name and a blessing. Once the blessing was finished, we gave others a chance to hold her. Before her birth, I wasn't planning on letting anyone hold her besides Matt and I. I thought that time would be too sacred to share. However, with how fulfilled we both felt by the time we had spent with her, we decided we wanted others to have the chance to hold her and to feel of her sweet spirit. I loved watching her get passed from loving arms to loving arms. That whole time we were in the hospital room, gathered around as family and friends for the sole purpose of honoring and adoring our girl Everly, was priceless. As Matt's dad pointed out after the fact, it was probably a pretty perfect day from Everly's perspective. She was able to come into this world, gain a body, meet her parents and brother, receive a name and blessing, and be held, admired and celebrated by a room filled with loved ones. That perspective made it all the more special to me that we had allowed others to hold her because I realized that it probably meant as much to Everly as it had meant to those meeting her.
I know I keep saying this but the whole experience...the weekend prior to the birth, the birth, the moment I met her, her passing, the room full of people gathered together to meet her...it was all so much different than I imagined it would be. I thought it would all be such a somber time, especially the time in the hospital room, where I would be fighting back the urge to sob as people stood around us, no one knowing exactly what to say. Instead, the peace Everly brought with her stayed with me and stayed in the room, touching the hearts of everyone present. There was a reverence and respect for the sacredness of the time and space but there was also so much joy. Genuine joy. I just felt so sure that this was the life she was meant to live and so happy that she was living it so incredibly well. Matt and I were proud of our girl and excited for friends and family to have the chance to meet her. And we were overwhelmed with gratitude -- both for those who came to help us celebrate Everly on the day of her birth and for the rest of our loved ones who spent 7+ months strengthening and supporting us and helping us find joy in the journey as we approached this big day.
At one point, my sister in law recorded me saying, "I feel so at peace. I love that I don't look at her and feel like she's missing out on a life she was supposed to live. This is the life she was supposed to live. This didn't ruin a plan. This wasn't a mistake. This is exactly what was supposed to happen. She received her body and now she can check that box and move on to bigger and better things." I still feel this way and it has done so much to help me in this current leg of the journey.
Matt and I spent 12 wonderful hours with Everly before we needed to allow Donor Network West to perform surgery on her. It was extremely difficult letting her go but I am so glad we stayed true to our commitment to let her donate her organs. Originally when she was born they told us her birthweight did not meet the minimum requirement to make the donation, which was really disappointing to Matt and I. We (especially Matt) had worked really hard to make organ donation a possibility and hoped that it would be a piece of the legacy she left behind. Thankfully, we had the world's best nurses over at El Camino Hospital and the nurse on shift made a case for Everly, arguing that her heart was strong and fit for a body of at least a 6lb baby. After a number of exchanges the Donor Network agreed to attempt to retrieve the valves.
Considering it still wasn't totally certain the valves they collected would qualify for transplant, letting them take her for surgery was especially painful. However, receiving the call that her valves were successfully retrieved and determined fit for transplant was a great reminder of why we signed up for that path in the first place. Selfishly we wanted more time with our girl and selfishly we didn't want her to undergo that surgery but ultimately we knew that she didn't need those valves anymore and by donating them, she may save the life of a baby who does need them. I hope and pray that if the time comes that a baby is in need, that Everly's sacrifice will be enough to give that little one the shot at life that she didn't have.
The next week I was sort of in a daze, just trying to physically recover as I figured out where I was at emotionally. That Friday was our 5th anniversary and we spent the morning visiting Everly at the Mortuary. It wasn't our most romantic anniversary, but it will probably be one of the most meaningful. We were able to have some peaceful time as a family where we could spend a few more minutes holding Everly, telling her how much she means to us and laying her to rest with all the love and respect she deserved. It meant so much to see her in the gorgeous dress and bonnet my sister in law had lovingly made and to lay her in the stunning casket our close friends had lovingly made and to tuck her in with the beautiful blankets my mom and friend had lovingly made. Like everything else in her life, it all seemed like it was fit for a princess. It was so touching to see how everyone involved took such care to give her the very best of the best.
Before I knew it, it was the night before her services and I found myself wondering if I was prepared for the events to come. I hadn't felt nervous or sad and I started to wonder if maybe I should...if maybe I wasn't properly preparing myself for the emotions I would soon feel. However I woke up the next morning reminded of why I had not been dreading or fearing the day. I wasn't looking at her funeral as a time to say goodbye. Matt and I already said our goodbyes. And it wasn't an overly emotional or somber goodbye. It was sweet and sacred and a time I'll always cherish.
I also wasn't looking at her funeral as a time to mourn her either. As I've said previously, I feel certain this is the life she came to live and knowing what a short time we had with her, I didn't want to spend it mourning the life she didn't live, I wanted to spend it celebrating the remarkable life she did live. I wanted to surround her with beauty and happiness and make everything associated with her life and passing as perfect as she is. And lucky for me, my wish came true. My baby girl got nothing but the very best for every step of her precious journey through mortality.
The services and luncheon turned out to be as wonderful as the day we met her. For some reason, the program for her services was really stressful for me to put together. Of all the big heavy things I was dealing with in this whole situation, I let the program be the thing that stressed me out. I think it probably had something to do with my dangerous "I want everything to be as perfect as she is" mentality, because I agonized over every last piece of it. Eventually I decided on a short program with an opening prayer given by Matt's best friend Jeremy, a talk on Eternal Families given by my sister Tamara, Everly's song written and performed by our friend Lenny, a few words from Matt, a closing hymn (Abide with Me), a closing prayer by my dad and then a dedicatory prayer on the grave by Matt. 
After the services we headed over to the luncheon, which looked as pretty as a wedding reception. A few months ago I put together a sign up sheet where people could volunteer to bring a dish of food. I passed this form on to my a couple friends and it was basically out of my hands from there on out. When I delegated that huge assignment, I was just relieved to have one less thing to worry about. At the time I wasn't envisioning centerpieces or a sign in table, I just wanted some tables to sit at and some food to eat. So to walk up and see white table cloths with floral arrangements and framed photos and a table filled with the most delicious looking food - I was so touched. It just seemed like everyone who had an assignment went so above and beyond in fulfilling their assignments. It seemed like there was so much love poured into every detail and I was so grateful to everyone who cared enough for our Everly to put together such a beautiful celebration for her.
Matt and I were talking on our way over to the luncheon and saying how we felt like we had crossed the finish line. Obviously this isn't the end. We still have our entire lives to live and there will be many more ups and downs before we are reunited with Everly. But what we just did...that was huge! From the time of Everly's diagnosis, we anxiously anticipated her death and the agony that would ensue. It was this life changing, inevitable train wreck of a milestone that we tried not to think about but couldn't help fearing when we did. And almost equally daunting was the thought of the 7 months we had to endure while anxiously awaiting that metaphorical train wreck. And here we are...we survived the impact! And it turns out, it wasn't really a train wreck, nor was it all that agonizing. It was actually really beautiful, in ways we could have never imagined. And those 7 months? A blink of an eye.
When we decided to continue the pregnancy with Everly, we did so on the condition that we would not let it ruin us. And we didn't want to give Everly just any life, we wanted to give her a life of meaning and purpose and joy. This became very difficult at times, especially as our short term perspectives started clouding our long term vision. However, with a lot of faith and extreme amounts of support from family and friends, we kept our heads up and tried to live our best lives for Everly as we prepared for her arrival. In addition to finding joy in the journey, we also tried to create meaning from the outcome. During the pregnancy we made arrangements for organ donations, organized a virtual race earning $5.3K for Anencephaly research (which Matt's employer matched, giving us $10.6K), prepared for breastmilk donation, and tried to be as open and transparent with our journey as we could so that others lives could be made better because of Everly's.
And then, when it came time for Everly to enter this world, we did everything in our power to make that a beautiful and joyous time for her. We covered her head with the prettiest hat, wrapped her in the softest blankets, surrounded her with people that loved her and we shared smiles and laughter and we spoke lovingly to and about her. Since her passing we've tried to focus on all the joy she has brought to us and the incredible impact she's had on the world. And when it came time for her services, we tried to show her how honored we are to be her parents with the most beautiful and heartfelt of celebrations.
I don't think it hit me until after her services what a huge assignment we had been given from Heavenly Father to bring Everly into this world. But when I look back on the time we had with her, from conception through her services, I feel so proud of us for how we fulfilled that assignment. I hope and I honestly believe that Heavenly Father is proud of us too. And I'd like to believe Everly is also pretty proud. From my perspective, we didn't just give her life, we tried so hard to give her the most beautiful life her little soul was equipped to live. So when I say we crossed a finish line, I guess that's the finish line I'm referring to. Heavenly Father gave us this enormous task and we finished it. Everly is with Him now, living a better life than we could have ever hoped to give her in this world. There isn't anything more we can do for her except to honor her legacy and try extremely hard to live as perfectly as she did. And that's exactly what we plan to do. We will be #livingforeverly until we meet again.
Every day I think back on the day we received the diagnosis for Everly and how we agonized for three long and painful days over the decision to continue the pregnancy or not. Every day I feel so profoundly grateful for the decision we made to bring beautiful Everly into this world and to give her the incredibly meaningful life I'm sure she was meant to live. Every day I shutter at how close I was to making a different decision. Every day I feel so proud, so honored and so unworthy to be her mother.
This whole experience was nothing I imagined it would be, more than I hoped it could be and worth everything it required of us. What once seemed an impossibly long and lonely journey to a dark and dismal end turned out to be a challenging and joyful journey to a beautiful and eternal outcome. And in hindsight, that journey was just a blink of an eye and one that I'd make over and over again to have the privilege of being Everly's mother. I have no idea what our future with Everly entails and what the challenges ahead may be but if I've learned anything from this experience, it's that we need to trust God. We need to trust that He has a plan for us. Trust that He will not leave us alone and comfortless. Trust that He will give us the strength, whether it be internally or through the support of loved ones, to match the challenges we are up against.
Throughout our journey with Everly I kept expecting the worst and hoping for the best, only to find the worst more manageable than I had thought possible and the best so much better than I could have envisioned. Heavenly Father will always strengthen us to bear up the burdens that are placed upon us and for me, so much of this strength has come from the angels (those from heaven and from earth) that have surrounded us. God himself has told us "I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up." I cannot finish this tribute to Everly without acknowledging the countless angels who helped us to this figurative finish line. I have felt so much stronger emotionally, mentally, spiritually, and even physically because of the support I've received from friends and family and I will be eternally grateful to each and every one of them for helping us to bear up our burdens. But the angel I am most grateful for is my sweet Everly.
Everly my love, you have changed me and this world for the better. I feel so unbelievably honored to be your mother and privileged to have made this soul stretching journey with you.
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