A Couple Lost Their Baby Daughter to a Rare Disease, and They Made Her Into Stones. Here’s Why

Family & kids
5 months ago

Following the heart-wrenching loss of their 15-month-old daughter, a couple opted for an extraordinary and personalized approach to ensure the presence of their departed child within the confines of their home, channeling their pain into a poignant testament to the enduring bond they shared with her. This decision reflects not only their unwavering love for their little one but also their resilience in the face of unimaginable grief.

A heartbreaking diagnosis

The journey of the Idaho couple, Kaylee and Jake Massey, took a heartbreaking turn when their little daughter, Poppy, was diagnosed with the rare genetic disorder TBCD at the age of 9 months.

The mom shared that when their daughter was born, they knew absolutely nothing, and she was perfect to them. Around the age of 4 months, they observed that her vision wasn’t developing properly. After several doctor’s and ophthalmologist appointments, it was determined that she needed an MRI on her brain. She mentioned that they finally got the MRI when she was 5 months old, and the results revealed that the central part of her brain, the corpus callosum, hadn’t developed properly, if at all.

Subsequently, they proceeded to receive one diagnosis after another, yet none proved to be conclusive. Following the utilization of the most advanced genetic tests available, they received profoundly distressing news — their daughter had a genetic disorder. At that particular time, she was reportedly the 38th child globally to receive such a diagnosis.

Unaware of the severity of the situation

The geneticists, to their surprise, were entirely unfamiliar with this disorder, having never encountered it before. Reflecting on their initial response, the mother admitted, “I don’t think we realized the severity of the diagnosis. We were just really naive in that regard.”

A few days before Poppy’s demise, the infant was hospitalized after Kaylee observed her daughter struggling with congestion amid a family-wide bout of respiratory illness. Kaylee recalled feeling panicky, expressing concern that Poppy seemed to have difficulty breathing, and their heightened sense of alertness regarding her well-being.

During the hospitalization, doctors discovered pneumonia in Poppy’s lungs, and she also tested positive for a respiratory infection. Despite these findings, Kaylee and her husband did not anticipate the severity of the situation.

Kaylee explained that there had been other kiddos with the TBCD genetic condition who had experienced pneumonia and hospital stays. According to her, these children were usually in the hospital for about a week and then would go home. She mentioned that they had heard from other families who went through similar situations, and the common expectation was that the children would recover and live to be 3 to 5 years old. However, she expressed that they were blindsided by the realization that her daughter’s body couldn’t withstand it any longer.

Experiencing the unthinkable

The next morning, Kaylee and Jake, who are also parents to 8-year-old daughter Rosie and 6-year-old son Peter, were notified that Poppy required transfer to the ICU. Kaylee remembered, “They said it in such a positive way. They conveyed it like, ’They have such better equipment over there, Poppy will get the care she needs.’”

As they were moving Poppy’s bed into her new room in the ICU, her eyes opened. Kaylee mentioned that it was right as they were pushing her bed into her new room in the ICU, and just about when they parked her bed, that her eyes kind of looked up at her, and she thought, “Oh, Poppy, your eyes are open.” And then her heart just stopped. And so immediately, the charge nurse started doing CPR and people were just yelling, “call code,” and frantic chaos ensued at that point.

Kaylee revealed that Poppy’s cardiac event occurred around 6:00 a.m., providing them approximately five more hours with her. They promptly informed their parents, who were caring for their other two children, and they were able to come and bid their farewells. Kaylee emphasized the importance of having Rosie and Peter there to say goodbye, acknowledging the difficult task of informing them, “Your sister’s going to die today.”

The challenging decision

While at the funeral home, the couple encountered the challenging task of choosing an option for their daughter. Kaylee conveyed the difficulty, expressing that they were sitting in the funeral home, and a catalog was handed to them to decide what to do with their daughter. She mentioned that it was just so horrible to flip through those pages and have to pick out an urn.

She explained that they knew they wanted cremation to keep Poppy’s ashes at home with them. Considering their two young children at home, they wanted to avoid having anything that could evoke fear or anxiety—such as fear of breaking or looking at it. She explained that they felt an urn might have that kind of presence in their home.

Kaylee expressed that none of the available options felt right for their family, including the traditional choices. While perusing the catalog, they came across a picture of attractive stones, and being a nature-oriented family, it caught their attention. After bringing the catalog home, they deliberated for a few days before arriving at a decision. It felt like all the options were bad, but the ’stones’ one seemed like the least bad option. They ended up choosing Parting Stones.

The emotional moment of receiving the remains

Several months later, the family received a “beautiful box” along with a handwritten note expressing gratitude. Kaylee recalled that the note was so beautifully expressed, resembling something like, “Thank you for entrusting us with your daughter. It’s been an honor to have her in our care.” She mentioned that it felt very personal, and she remembered opening the card and having the feeling that those people cared about her daughter.

As they opened the bags containing the stones, Kaylee recalling that the stones appeared very beautiful, being white with little specks of yellow in them, and it was mentioned that they don’t alter anything with the ashes. She further mentioned not knowing what the little specks of yellow are, but she felt like they were such a little, special gift.

For the mother, the most “heartbreaking” aspect was observing the limited number of stones. She explained, “There’s 13 or 14 little stones. Her body was just so tiny, and so of course there’s not going to be many stones, but I think that just broke me a little bit.”

The family stores the stones in Poppy’s swing, symbolizing where she would be if she were in their home rather than in their arms. Kaylee stated that they are not afraid of anything happening to the stones, as they are not like an urn. Currently, the stones are in their box, primarily because the box is aesthetically pleasing.

For the time being, the stones are displayed in their home, and Kaylee expressed their preference for this arrangement, as it provides the option to spread her ashes in the future by taking a stone and leaving it in a meaningful place.

Keeping Poppy’s memory alive for the longest possible.

Kaylee also mentioned that the family purposefully leaves Poppy’s belongings visible at home to have constant reminders of the joy she brought into their lives. She emphasized that as a family, they talk about Poppy all the time and discuss her in a positive manner.

To maintain a positive atmosphere, Kaylee explained that they keep everything bright, light, and fun for their kids. She emphasized that they encourage their children to play with Poppy’s toys, clarifying that their intention is to avoid associating the toys with sadness but rather with joy.

Kaylee added that their kids play with her basket of toys, move around her bassinet crib to create forts, and sometimes they say, “Oh, Poppy’s helping you guys out today.” She mentioned that while she might consider putting the toys away one day, her heart is not ready for it yet.

Despite the overwhelming challenges depicted in these events, Kaylee exhibits remarkable resilience and maintains hope for brighter days ahead, as life is a mixture of hardships and beautiful surprises. And here’s an uplifting narrative that unfolds in the account of a grieving mother who, during a visit to her baby’s grave, received delightful news from a total stranger.


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