Once we were back home, we entered the final chapter of Lumi’s life. I did everything in my power to make her feel as if everything was still okay, as though life was continuing as it always had. In the evenings, when we lay together in bed, we would watch the beautiful clouds and stars projected onto the ceiling. I would point to them and tell her that God lives up there, and when elderly people or children pass away, they get to live there too. Lumi looked forward to meeting Jesus. She would ask me whether she would have her own room in Heaven and whether there would be a mother who cooked delicious meals. The conversations were really painful but precious, even though Lumi never knew that she was going to die.
Until the final two weeks of her life, there was always someone close to me present to help with daily tasks and practical matters. But eventually I could see that it had become too much for Lumi. She needed peace and quiet. As she put it herself, she wanted to “just stay with Mommy.” During those last two weeks, I did everything on my own. It was a constant cycle of medication, around the clock. Every five hours, day and night, she received morphine and midazolam. The oxygen mask was there whenever she needed it. The stress, the endless grief, being constantly present for your child, it was so much. Far too much for one person to carry. But I wanted to give her everything I still could. Because she deserved that. Eventually Lumi could no longer stand on her own legs. The heavy medication left her lying on the couch most of the time, often drifting in and out of hallucinations. Eating became increasingly difficult. In the end, there was a day when she managed only a few pieces of watermelon and a small bowl of cornflakes. Because after that, she immediately became short of breath and needed oxygen. My sweet little girl, who could barely do anything anymore. There are no words for the sorrow of watching your child slowly fade away.
She also became frightened. She no longer fully understood the world around her. Every time the doorbell rang, she would panic, convinced that someone had come to take her back to the hospital. Each time, my heart shattered all over again. I would reassure her and say, “No one is going to touch you anymore, sweetheart. Mommy is your doctor now. You will always stay with Mommy.” And then she would feel safe again. On the final day of her life, August 14 2024, the palliative care team visited us once more. They believed Lumi still had about two weeks left to live. With that expectation, we went to bed that night. I tried to read her favourite book, but everything had become too overwhelming for her. I gently stroked her back, and she clung tightly to me, just as she did every night. And so we fell asleep. Until suddenly, at three o’clock in the morning, she suddenly sat upright in bed and screamed. She was having another attack. The pressure in her chest was building again. I managed to give her medication as quickly as possible, hoping it would relax her lungs and help her breathe again. But this would be her third and final attack. Before I knew it, she began slipping away, and I immediately held her in my arms. There I was, sitting in the middle of my bed, watching my child die. There was nothing left that I could do for her. Her head tilted backward as a rattling sound came from her lungs. In that moment, I knew what was happening. I knew her body was slowly starting to shut down.
At one point, I saw the light leave her eyes. And I knew then, that her soul had left her body. Her body began to twitch with slow spasms until her heart finally stopped beating. Her dying process lasted half an hour. For thirty minutes, I comforted her whilst I screamed on the inside. I watched over her and prayed. Never in my life had I felt so powerless. How could this be happening? She was the greatest love of my life. And I could not save her.
After she died, I laid her on my pillow and gently closed her eyes. I still had one of her favourite blankets, decorated with a small rainbow, and I placed it over her. Her teddy bear rested in her arms. For another hour, I wandered through the house in disbelief and despair. I kept returning to her, checking on her, talking to her but she no longer answered me. I must have kissed her face a hundred times. And then I followed her. I had promised her that Mommy would always stay with her, no matter where she was, and I intended to keep that promise. Life no longer felt worth living without her. Eight hours later, my neighbour found me. It was a miracle that I was still alive. I underwent surgery, and to this day it remains uncertain how much of the damage will heal. I still have a long road ahead of me.
Since I had deliberately not reported Lumi’s death, a police investigation was launched to determine whether I had played any role in her passing. I was held under police custody for seventy two hours, constantly accompanied by two officers who followed me everywhere. After multiple interrogations, a thorough review of medical records and an extensive investigation, I was finally cleared and allowed to leave. For my loved ones, it was an enormous shock. They had nearly lost two people they cared about at the same time. They immediately flew to Finland to support me. What they did for me during those days, everything they arranged, everything they carried on their shoulders, is something I will remain grateful for for the rest of my life. Lumi is buried in a picturesque cemetery. Her headstone is made of white marble, with a small golden moon engraved on it. Because we always used to say to each other, “I love you to the moon and back.”
The doctors eventually identified the TNNI3 gene mutation in Lumi, the mutation that affected her heart and caused her illness. They also found the same mutation in me, although only to a limited extent. It is present throughout my body in a mosaic pattern, and because of that, I experience little to no symptoms myself. In my case, the mutation occurred spontaneously while I was developing in the womb. Neither of my parents carries it. My daughter inherited a combination of my genes, and out of all the predominantly healthy copies, she happened to inherit the few affected ones. Those mutations then became active. The doctors will never know what caused it. It is almost unimaginable, just pure bad luck. And now I am faced with a choice. Do I try for another natural pregnancy, knowing that the chances are overwhelmingly in favour of a healthy child? Or do I pursue IVF with genetic screening and selection? Yet even that option comes with a margin of error, one that is roughly comparable to my own situation.
I have had to pull myself out of a very deep hole. Once you find yourself in that pitch black abyss, there is only one direction left to go, and that is up. I have embraced everything that could help me heal. What saved my life was spending time in nature, meditating and reading books. So many books. For others who are grieving, I can recommend books that explore the possibility of an afterlife, based on research and personal accounts. Books such as Journey of Souls by Michael Newton and Life After Life by Dr. Raymond Moody. To help me stay grounded in the present moment and prevent painful thoughts from taking over, The Power of Now by Eckhart Tolle was invaluable. His books and lectures have been a tremendous source of comfort and wisdom. I can also share that my loved ones and I have experienced countless remarkable and deeply meaningful moments since Lumi’s passing. Experiences that felt mystical and impossible to explain. I believe that a soul continues on. That energy does not disappear. You simply have to learn how to feel your loved one in a different way.
But they are always there. So keep your heart open. Allow yourself to consider the possibility that it might be true. Because at this point, there is nothing left to lose.
For what is loved is never lost, and she was loved so much.