I gave birth to our sweet baby Brooks on February 15th, 2021. Everything was going so well in my pregnancy until 28 weeks after having had COVID and I was sent to a maternal-fetal specialist. On February 8th, I was referred to a pediatric cardiologist to examine Brooks’ heart, and after an hour and a half ultrasound, we were told, “Your baby’s heart may stop beating at any moment. His aortic valve is extremely narrow, and his heart muscle is very thick. He also has slight fluid around his heart and lungs.” I was in tears holding Michael’s hand because up until this point, we were told everything looked great with our baby boy.

Little did I know, February 9th would be a day marked in my mind forever. I was by myself at this appointment since Michael had just started a new job, and upon having another in-depth ultrasound at the MFM, I was told in a matter of 24 hours, there had been a further accumulation of fluid around Brook’s heart and lungs, and I would need to go to the hospital right away. I was by myself and then a chaplain walked in and gave me her card, which had the words “grief and loss counseling” on it. My mind and heart started racing.

Here I was, 29 weeks pregnant, thinking we were bringing home a healthy baby boy home soon and my world was turned upside down.

I called Michael immediately and thankfully, he was allowed in the hospital with me during this time, given COVID-19 precautions.

I was then monitored at the hospital for two days and underwent extensive testing. The doctors wanted to wait as long as possible before suggesting a C section, so I was put on bedrest and underwent fetal heart trace monitoring. Two days later, the MFM said the baby is doing just fine and I would just need to be closely monitored for the remainder of my pregnancy with ultrasound and doctor’s appointments daily. I was no longer able to work with being at the doctor’s daily for multiple appointments.

After leaving the hospital the first time, I was on edge and just praying so hard for God’s protection over our sweet baby boy. On February 15th, I went to the MFM for another ultrasound and was told Brooks was in distress, and I was having consistent contractions. The MFM said it was better at this point to have an emergency C-section to best help treat Brooks. Michael dropped everything and rushed to the hospital and I gave birth to Brooks at 8:11 PM on February 15, 2021.

I did not hear Brooks cry. I didn’t get to see him.

Baby Brooks in the NICU - Life After Loss: The Beautiful Dance of Grief and Joy

Author’s Personal Collection/Melissa Johnson

Michael did get to hold Brooks and then they both rushed out to the NICU while there, I lay on the operating table in tears and shaking in fear. I felt robbed of the moment I had been longing for and just praying for Brooks to be healthy. I did get to see Brooks 24 hours later in the NICU, which brought me to further tears, but the moment our eyes connected, I experienced a love I never have experienced before. The neonatologist said, “Brooks is doing amazing and looks so much better than we anticipated based on the ultrasounds.” The pediatric cardiologist came to my hospital room and said, “Brooks is doing amazing. He does not have aortic stenosis as we thought, but he does have heart hypertrophy which we think will decrease over time. No interventions need to be performed. This is good news.” We were so hopeful.

Baby Brooks in the NICU - Life After Loss: The Beautiful Dance of Grief and Joy

Author’s Personal Collection/Melissa Johnson

Meanwhile, I did have an amniocentesis between my two hospital stays and we received the results after I delivered Brooks. Again, we received good news from these test results. Our hopes were high. We knew were going to be in the NICU for a while and made arrangements for this new way of life. Fast-forward two weeks into Brooks’ life, the neonatologists suggested we transfer to CHOA to have further specialized testing to better treat Brooks. On March 2nd, 2021, I watched my baby boy be transferred into a neonatal ambulance and drove behind the ambulance all the way to the hospital, never losing sight of where my baby was. Upon arriving at CHOA, I was introduced to a variety of specialists and felt extremely overwhelmed just wanting answers and for someone to heal Brooks. Michael and I lived exactly one mile out of the distance to qualify for the Ronald McDonald House, unfortunately. So our new routine: sleeping at the hospital overnight and other days I would spend 12 hours at CHOA. Michael would spend all his time at the NICU after he was finished working for the day.

On March 7th, 2021, the neonatologist came up to me and said, “Mama, I’m sorry but there is nothing else we can do. I think he will pass in the next few hours.”

I couldn’t make eye contact with the doctor. I laid my hands gently over Brooks’ heart and prayed so hard on my knees for God to perform a miracle. I knew God was the ultimate physician and healer. I started crying and called Michael to immediately come to the NICU to be at Brooks’ side. On March 7th, 2021, our sweet baby boy passed away in my arms and went to Heaven. We told Brooks just how much his mommy, daddy, and Jesus love him. We told him how proud we were of him for fighting so hard and making us parents. This was an out-of-body experience, one that is in my mind vividly and tied to so many emotions.

We held a celebration of life service for Brooks on March 11th, 2021. With this service being in the middle of the week we didn’t expect many people to come, mainly just close family. My heart again began to race when a line of cars began to pull up to the memorial site, and it brought me to tears just how many lives our baby had positively touched. In a matter of just three weeks, our baby boy left an impact on this world in such a beautiful way that some people don’t in an entire lifetime. Michael and I spoke at our baby boy’s service because we wanted to honor him and his short life. This was the most heart-wrenching day, along with the day Brooks passed in my arms.

In the following weeks, Michael and I underwent genetic testing to get further answers as to why this happened and to see if we could try to have children of our own again in the future. Along with grieving the loss of our firstborn, we had to wait months to find out if we could ever have a family of our own. This time was filled with extreme sadness, disbelief, anger, and fear. We received news that Brooks had cardiomyopathy (thickened heart muscle) which unfortunately there is nothing that can be done for. We had tears of sadness while trying to cling to hope for our sweet baby boy.

With fragile, anxious, and hopeful hearts, we wanted to try and grow our family that same year, and I became pregnant in August 2021.

Unfortunately, I experienced a missed miscarriage with our daughter, Hope, at 11 weeks. We were completely shattered and, again, were overcome by grief as we only lost our son, Brooks, a few months prior. I always say my husband and I always somehow kept a tiny glimmer of hope, even in the darkest valley we weren’t sure we would ever climb out of. With that glimmer, we decided again to grow our family, as it was our greatest desire. I became pregnant again in February 2022, and we joyfully welcomed our double rainbow baby, Liam Maverick, into the world on November 2, 2022. I have learned so much throughout my grief and healing journey and continue to now as we navigate a life of parenting after loss.

Rainbow baby Liam - Life After Loss: The Beautiful Dance of Grief and Joy

Author’s Personal Collection/Melissa Johnson – Photo Credit: Sweet Me Photography

During my pregnancy with our double rainbow baby, I truly struggled with intertwining the emotions of grief and joy.

Family with Rainbow baby Liam - Life After Loss: The Beautiful Dance of Grief and Joy

Author’s Personal Collection/Melissa Johnson – Photo Credit: Sage and Cedar Photography

My therapist then explained it to me how the emotions of joy and grief can be seen as a beautiful dance. While these two emotions are completely opposite of one another, both can also be completely present simultaneously. One emotion does not need to be independent of the other, and as I am learning, I can both smile with joy while also have tears of sadness. I can be thankful for our double rainbow baby while also mourning the loss of our firstborn son. It is the power of the “and” not the “or,” because both emotions can be fully present and co-exist. I do not need to choose either joy or grief, but I am learning how these emotions can mingle together as one, as they are both so deeply ingrained in who I am. I won’t allow my feelings of despair and grief to also negate my feelings of joyfulness. I full-heartedly believe there is space for sadness, grief, hurt, joy, hope, and of course, love in my heart. Some days the dance may have smooth transitions, while other days it may be rigid and that is completely okay. As I give myself the space I need to feel all of these emotions, that is what I consider the ongoing beautiful dance.

Melissa with Rainbow baby Liam - Life After Loss: The Beautiful Dance of Grief and Joy

Author’s Personal Collection/Melissa Johnson – Photo Credit: Sage and Cedar Photography

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