“Some might contract and feel pity when they hear our story. Don’t. Even as I was commuting back and forth to the hospital to be with my life-limited daughter, I felt like the luckiest mother in the world. I was grateful to have her know my voice when I walk into the room and turn to find me. Every day, I got to look into her big beautiful eyes and tell her how loved she is and what a brave girl to choose this life. You see, Eva and I communicated with each other before she was conceived. She taught me so much about life on earth and now, more intimately, life in heaven. There are few people who allow their hearts to understand these lessons. So even though I wish she was in my arms every second of every minute of every day, I know she gleefully chose me to be her mother and for that, I am humbly honored.
After three years of trying to give our son a sibling and experiencing a heartbreaking miscarriage, I was feeling hopeless when Eva came to me in meditation. She appeared as a little girl with pigtails, around five, looking a lot like I did at that age. As she giddily wrapped her arms around my neck, Eva told me that she was coming soon.
With tears dripping down my face, the love between us felt so real. Was my mind making this up? I wrote about the experience in my journal and told a few close friends. One joked, ‘Were you high?’ We don’t talk about connecting with spirits in our society, but there’s actually a name for this pre-birth communication — Spirit Babies. Only time would prove its authenticity.
I soon had a positive pregnancy test. And by 10 weeks, a genetic blood test revealed it was indeed a girl. It’s such a gift to have a deep spiritual connection with my daughter. We are all energy and energy doesn’t die. I believe there is a bigger purpose to our communication, far greater than being her earth mother. Eva wants me to share our story so other parents experiencing grief and loss can trust the messages sent from their child. Many people have experienced something spiritually mystical with their loved one in the afterlife, it’s just rarely discussed.
When I was 18 weeks pregnant, Eva and I traveled alone from Seattle to New Zealand to visit my sister-friend and her family. I’m so thankful my friend met Eva. The trip was what my heart and soul needed at the time, I just didn’t know how much. When we returned from our trip, our whole world started closing in on us. After an abnormal 20-week anatomy scan, I was sent to a maternal-fetal medicine office. They kept discovering more and more things wrong with our girl in ultrasounds. We were in shock. The geneticist told us it was probably some type of chromosomal abnormality. We finally agreed to amniocentesis, hoping for an answer. It turned out to be a devastating one. I was blocks away from home when my cell phone rang. I heard the genetic counselor saying words like, ‘extreme developmental delays’ and ‘short life expectancy.’ I was frozen. I couldn’t even really hear her as my heart sunk into the depths of the earth.’“Can you hold on so my husband can hear this with me?’ I zoomed into our driveway, ran through the door, and threw my purse while screaming: ‘Joe!’ We sat down at the kitchen table with the genetic counselor on speakerphone. She revealed to us the most heartbreaking news I have ever been confronted with. I’m 28 weeks pregnant. We now have no clue what the future holds for our dear child.
She explained that Eva has both a duplication on chromosome 1 and a deletion on chromosome 17, which caused something called Miller Dieker syndrome (MDS). The researcher in me couldn’t even bear to type it into Google until the next day. It is really rare, with less than 10 in a million diagnosed. The main component is lissencephaly, meaning Eva’s brain developed smoothly, without the typical grooves. MDS comes with extreme seizures and developmental delays — no sitting, walking, talking, with many complications such as respiratory issues. The life expectancy for a child with MDS is two years old.
All I heard was my precious daughter, my dream come true, the baby I had been communicating with and felt so close to, was going to die. And somehow I would have to go on without her. The extreme joy that came with Eva had deflated in an instant. August 16, 2017, the day of her diagnosis, is worse for me than the day Eva died, because it’s the day we found out that she would pass. It was the middle of summer, my favorite season, and the sun was shining bright for weeks after. For us, though, the world went black. I finally understand what that means. The sunlight was dim as I prayed for the typical Washington state rain to pour so the weather would match the mood in my heart. I started questioning our spiritual connection. Why had she not revealed this to me? Would I have listened? Then I remembered a vision I had on the acupuncture table a few years prior that I tried to push away because it terrified me. My son, Max, and I were looking at a baby in an incubator. A dead baby. A prophecy. Reflection really reveals a lot.
After a few days of processing, I was open about Eva’s diagnosis on social media and have continued to be throughout her life and death. I feel others have really gotten to know her and learn from her brief life. Eva has so much love surrounding her. Not everyone is as fortunate. The hardest thing was breaking our son Max’s heart. He was seven at the time and had already been nervous Eva would die because he knew about the miscarriage. We had reassured him and now we had to take it back. After shedding tears, he proudly wore his ‘Big Brother’ shirt the next day. He told me, ‘Even if sissy looks funny, I’m still going to love her just the same. And if anyone makes fun of her, I’ll tell them she is who she is and we love her.’ We didn’t keep anything from Max, and I really think it’s helped him make sense of things and process his grief. It changes as he ages and understands more. Sometimes it’s Max who has reminded me in my deepest grief that Eva lives on. There would be no baby shower with so many unknowns, but my friends still gathered to nourish my heart and celebrate our beautiful daughter.
Some started dreaming about Eva. She is one chatty soul, let me tell you, the girl makes herself known. One of these dreams had me busy with two children (another foretelling of what was to come.) Eva explained she didn’t like the plastic container we had put her in — the NICU bed. I had been so focused on Eva dying, it was time to start thinking about Eva living. I joined Facebook groups with MDS parents and asked questions, trying to understand what life would be like for Eva. Since Eva’s syndrome was so rare, the parents knew a lot more than the doctors we were working with. Everyone said, ‘don’t limit your child, they will surprise you with what they can accomplish.’ These parents inspired me with the beautiful love and lessons their children bring.
Joe and I had some deep talks with the palliative care team at the hospital. We wanted comfort care for Eva, letting her lead the way. We prepared ourselves to be special needs parents. Our biggest fear was that Eva would suffer. Somehow I carried on and went back to work for two months, saving my leave for her arrival. My coworkers were so gentle with me. My boss made sure I regularly had chocolate chip cookies. It was such a sad time. I would pace the house at night, rubbing my pregnant belly and looking at the sky while talking to Eva. She is our ‘Twinkle Star,’ the song I sang to her while pregnant, it symbolized so much about her — Eva’s light still shines so brightly. I can no longer look at the night sky without seeing her.
We decided to induce at 37 weeks because Eva was barely growing and so very tiny. She would be delivered in the city of my youth, where there was a Level IV NICU. Eva was named after my beloved Grandma, Bertha Eva, and her mother. It means ‘life.’ Even though we are an hour away, our Eva ended up living just blocks from where my Great Grandmother Eva raised her 13 children. Serendipity was at play so many places along the way. Walking into the hospital that morning was like floating into a white cloud of the unknown. We truly did not know what to expect. Would she die during birth, right after, weeks, months, years? We were all treated with such dignity and respect along the way. The hospital let us make decisions for our life-limited girl so we could enjoy our time together.
Eva was born the night of October 23, 2017, at 7:17 and was 17 inches long, missing a portion of chromosome 17. Needless to say, 17 is Eva’s number. And it’s a fun way that she now sends us signs from beyond. Big brother loves finding 17, it was even a part of his bus number: 117.
When Eva was born, her daddy thought a miracle happened because she was so strong and alert. She nursed her only time due to her inability to suck. I held her for two hours before they took her 3-pound, 10-ounce body to be measured. My mom and Max were there and later, our doula and a dear friend, who took beautiful pictures of our first moments together. I cherish these because Eva has no face tape, and we were so happy.
The nurse let Max hold the oxygen mask over Eva, giving her a little shot to get her going. He drew a cute little image of himself and daddy pushing Eva in a cart on the whiteboard. It all felt so ‘normal’ as we moved down the hall to the postpartum room and Max pushed the button playing ”Twinkle Twinkle Little Star,’ announcing our girl’s arrival to the rest of the hospital. Eva ended up having major bowel surgery to help her process her food, something we considered comfort care. At 22 days old, she had pretty much healed, but we still couldn’t get her off the ventilator, even though she had breathed on her own prior to surgery.
On her last day of life, she was on the BiPAP as I left her for the evening, heading out a little early to wash her cute bedding. Earlier in the day, we had a magical moment as we looked into each other’s eyes. Her eyes were much more focused than usual. Even Eva’s nurse noticed. My girl was telling me goodbye, I just didn’t know it. Around 9:30 at night, we received a call from Eva’s dear nurse saying we should get to the hospital. I suspended my tears and fears during the hour drive as the nurse kept calling us to find out where we were. I knew Eva was struggling and suffering, so I told her to go. And she did.
As we snuggled her lifeless body, I forgot about our spiritual connection. We were all in shock she was gone, even with her diagnosis. We thought she was healing and coming home. I have no doubt Eva was with us, holding us as we tried to save to memory every detail of her tiny earthly body. Her golden nest of hair that covered her smooth brain that we couldn’t fix. Most people don’t get to meet their spirit guides. I birthed one of mine. She carried me through the ugliest days of grief, always repeating, ‘I love you, Mama’ in my darkest moments. We all know death is the fate of every living thing, but to dance so intimately with birth and death is something rarely discussed. Babies still die in this modern world. I don’t want other mothers like me to grieve in isolation.
Time and again, I hear about older mothers who never discussed the loss of their baby and how it affected their life, their motherhood, to keep that grief tucked away. Our babies deserve to be celebrated. These beautiful souls touch down for a moment in time, but they have such a profound impact on the world around them. Trusting that our daughter is still with us brings me great comfort. Eva reveals her existence to us in signs. I have so many examples. A few weeks after she died, I touched her ashes on the mantle with tears in my eyes as Max asked me to help with Hulu. The first three letters in the code were: EVA.
Another time, I was really mourning on a forest trail when I asked Eva for a sign. A few steps away, there were two star stickers on a post, the type you get in school for a job well done. I think she was giving me a little hint in this sign — that another star might be joining us. Our Twinkle Star is amazing, I tell you!
As the months wore on with empty arms, we still wanted to give Max a living sibling, but due to genetics, our odds were not the greatest for producing a healthy child. In fact, there was a 20% chance we could have another baby with a similar chromosomal abnormality. I looked at every route possible to expand our family. Almost a year and a half after Eva died, we accidentally became pregnant for the first time in our 23 years together. We were shocked and fearful that this child would have health complications. THANKFULLY, early genetic testing revealed this baby wasn’t even a carrier of the genetic condition, which was a possibility. It looked like we were bringing home a sibling for Max.
We told him the day after we got the happy results. He named his brother Leo, then and there, with no doubt in his mind. I think he knew something we didn’t. I consider each of my children a miracle, but this one blew us away. Eva was right. Pregnancy after loss is traumatic. I now know the myriad of ways babies can die. Every time my mind would start rushing to a fearful place, Eva was there to reassure me all would be okay with her baby brother.
People in our community paint rocks and leave them on local trails. As I walked with baby brother, I found the most appropriate rocks for our journey. I have kept them all. One, in particular, I found before we knew the baby’s genetic results — that was the most fearful time of my pregnancy. As I stumbled around crying on the trail, I found a rock with a rainbow. Babies born after a loss are considered ‘rainbow babies,’ it was the most fitting sign for my weary heart.
Leo Forest Larson was born in a hurry at 10:46 p.m. on New Year’s Eve 2019 — ushering us into the new decade with renewed hope. As we held our longed-for child while the ball dropped in Times Square, I could feel Eva smiling with us. She knew this was the plan all along. I have no doubt she played a significant role in the ease of her brother’s arrival. Somewhere along the way Eva and I made a pact: she would watch over us and I would spread her lessons of LOVE. Yes, there is still pain and anguish, but I can now see the peacefulness in the pain too.
Everlasting peace is my hope for my daughter as well as for other parents who lose their child too soon. I want them to understand the comfort Eva brings, and their child wants this for them as well. So don’t feel sorry for me, for I am the mother of Eva, and she is a magnificently magical soul. She is much more than her earthly body. It’s not her death that has changed me, but her very existence.”
This story was submitted to Love What Matters by Lori Larson from Washington State. You can follow their journey on Instagram and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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