- Kaylee Massey's youngest daughter Poppy was diagnosed with a rare genetic disorder at nine months old.
- Poppy died at 15 months old after being admitted into the hospital for an infection.
This as-told-to essay is based on a conversation with Kaylee Massey, who runs a TikTok account dedicated to her daughter. She posts about her life as a mother and shares her journey dealing with grief. This essay has been edited for length and clarity.
When our daughter Poppy was born in February 2022, we had no idea anything was wrong with her brain.
With my husband, Jake, and our two older children, Rosie, 8, and Peter, 6, we were this perfect little family of five for a few months.
But right around the three- or four-month mark, we noticed Poppy's vision wasn't developing properly. She couldn't engage with eye contact or reach for toys.
The ophthalmologist couldn't tell us about what was causing the problem. We thought she'd get some little adorable baby glasses, that's all.
After a few doctor appointments, we decided to get her an MRI and do a genetic test. The results of the test were devastating: Poppy had TBCD, a rare and severe genetic disorder that affected her brain and spinal cord.
We were told her life expectancy was between three to five years.
But my husband and I are both optimistic people
We told ourselves that we'd give her the best care and that we'd be able to overcome this as a family. We were both thinking she'd easily hit the five-year mark, or even longer.
What kept us afloat was just the busyness of the day-to-day. There wasn't much time to be devastated because we were moving forward.
In late April, we brought Poppy to the hospital because we noticed there was some blood in her feeding tube. The doctors found some spots of pneumonia in her lungs, and she continued to have a fever and seizures.
The medical team took great care of her. We didn't expect her condition to take a turn so quickly.
The fourth night we were in the hospital, the medical team suggested we transfer Poppy to the pediatric ICU. As she was wheeled into her new room, her eyes suddenly looked up at us.
I remember saying something like, "Oh, Poppy, you're awake." And then her heart just stopped.
The entire room was thrown into chaos. I felt like my vision almost disappeared, and the room was spinning around me in slow motion as they tried to resuscitate our daughter. It was so traumatic to watch.
They got her heartbeat back, but her brain had been without oxygen for a decent amount of time. It was at the point where she would no longer experience any sort of quality of life.
We're so grateful to her doctors who immediately started forming a care plan, but we already knew that it would be Poppy's last day.
Rosie and Peter came to the hospital that day. Our parents came too. We had a chance to say our goodbyes as a family, which I'll always be thankful for.
The hardest thing in the entire world was having to walk away from her body in the hospital, so we knew that we wanted Poppy's remains at home with us.
We decided to have her ashes pressed into stones
When we were looking through a catalog at the funeral home, that option stood out to us because we were concerned about having an urn in the house.
We didn't want our kids to associate a fear of breaking something with being close to their sister. Neither did we want them to feel like there was a shrine that they couldn't interact with.
But these stones are essentially unbreakable. In the future, if we wanted to, we could even take a stone with us wherever we go.
The whole process took about three months. It was an emotional day when her remains were back in our home.
What surprised us was how few stones there were: Poppy's ashes produced about 12 stones of varying sizes, and they were all quite small.
They say they don't add anything to the ashes, but when we opened the box, we noticed these little specks of yellow mixed into the white stone. I don't know what they are, but these little yellow specks make me smile whenever I see them.
We kept the stones in the box they came in and placed the box on Poppy's swing in our kitchen. It was where she was whenever she wasn't in our arms.
It has been a beautiful thing for our family
It's a way to hold space for Poppy in our house. And the kids are not fearful of the stones.
We were quite direct with them about Poppy being cremated, and they both understand that these stones are compressed ashes.
The kids don't play with them, but Peter will take them out more than Rosie. He'll hold one and walk around for a few minutes. When he's done, he'll put the stone back in the bag and close the box.
I think the stones helped me with my grief too.
We spent the 15 months of Poppy's life working so hard to protect her. We would obviously choose to do that forever, but it almost feels like we can rest with Poppy now.
So much was changing so fast while she was alive, but the stones feel like permanence, and there's something symbolic about that.
Steady as a rock, and that gives me a lot of comfort.