I know people are afraid to ask indelicate questions at a time like this, yet I know people have questions. So I am going to attempt to answer the most prevalent ones here. If you have other questions, feel free to comment or email me. I will not be offended…unless it’s an offensive question.
Having James’s visitation, funeral, and burial at home was incredibly important to our family. Long before he was born, when we first received his diagnosis, my mind jumped to worst case scenario. In that dark time, I started reading about the laws governing burials, the options available to us, and personal stories. In all this reading, I came across an article written by a mother grieving her adult daughter’s death. She lovingly recounted how her daughter died at home on hospice, and they kept her body there for an extended home visitation and then burial. The story touched me enormously. Her mother had cared for her from her birth until her death and beyond.
Jim and I had long conversations about what we would like to do in the event that James died. We met with the Mountain Area Pregnancy Services. We read books, articles. I had an idea in my head, but of course, there were questions. What would happen if we moved? Would his burial site be secure? Would we even want to bury him? What about cremation? Was it crazy to consider doing this at home without professional help?
Since the funeral, people have asked me questions hesitatingly, and I figured since I’ve been hearing a theme, I would do a “home funeral FAQ” for those that are interested.
1. Why did we bring him home? Didn’t it seem morbid to have a deceased child in the house for 2 days?
From the moment James was born, his dad, myself, or someone who loved him was with him. We cared for him every day of his too short 5 months here. He was and always will be our son. We held him when he died, and it was the most exquisitely bittersweet pain that I have ever felt. If I had to hand his body to someone else after that experience, I would have died in the hospital that day.
The beautiful continuity of bringing him back to our home after his death, laying him in his bed (courtesy of the Cuddle Cot), seeing him for 2 more nights before we had to say goodbye forever, being able to hold him during his visitation, during his funeral, those things started to heal the grief in ways that a mortuary and cemetery burial could never approach.
He was and is our son. It was our gift to him to care for him from his birth until his death. We bathed him before his visitation. We dressed him. We held him. We loved him. It was the most beautifully tragic experience of my life. I would not have had it any other way. It did not feel strange or morbid to have him here with us, even though he was gone. He still looked like himself. He was still the baby I have loved since I first knew about him on Dec 5, 2015.
The thought of having a funeral home handle his remains, however respectfully, and apply makeup in an attempt to achieve a “life-like” look was not what we wanted. He was our son, in life and death. We had prepared for his death from the day of his diagnosis, and we were not afraid to look on what death meant for his earthly remains. He still looked like James. He still had that baby smell, even until we buried him.
The Cuddle Cot was essential in allowing us this grieving process. Without it, we would have
needed to rely on the vagaries of dry ice – which also can be done. But the Cuddle Cot was
Many of you saw him in person at the visitation and at the funeral, and as you probably noted, there were physical changes – pooling of blood in dependent areas, his lips and skin were very blue-tinged. It was still James however. With the help of the Cuddle Cot, we were able to preserve him for the services.
The only downside was that things needed to move quickly – faster than they would have
moved had we gone the conventional route, since he was not embalmed and refrigeration only works for so long.
2. Is it legal?
In the state of NC, all decisions about James’s body belong to us. We could transport his body freely (without needing a permit) with permission of his doctor or the ME (if that applied – which in this situation, it did not). We could bury him when/how we chose (of course- only on our property). Embalming is not required, and actually, keeping the body cool achieves the same purpose of embalming, hence the Cuddle Cot. It it suggested that we plot out his grave and file this information with the courthouse, but it is not required.
3. What if we move?
The vault and casket are sturdy but small. He was buried about 3 feet deep. It would not be physically difficult to exhume the casket. Emotionally is, of course, another story altogether. I battled with that thought, but ultimately, I wanted him home. It was very important to us that James be nearby. We looked at some cemeteries online, but it bothered us both to “leave” him somewhere that we were not. Though we only have his physical remains, his presence somehow is with us through the proximity of his earthly body. It doesn’t make much sense, but it is how we feel. It has already been tremendously soothing to have him with us at home. Whenever we want to visit him, day or night, he’s just a few steps away.
The first morning after his funeral, I felt so lost and scared. I bundled up and walked out to his grave. I sat next to it and talked to him, and it instantly made me feel better. We’ve never had to leave him and that is very important to us. We have been with him from cradle to grave. I’ve never had to hand his body over to anyone else or leave him somewhere and come home. He’s right here with us.
4. What other benefits of the home visitation and funeral are there?
It was amazing to have him home with us. During the single most difficult, agonizing time of my life, I was in familiar surroundings, in the place that James lived with us. I was not in an uncomfortable, unfamiliar place (i.e. a funeral home). We were able to do everything exactly as we pleased. On Tuesday, we had a lengthy, open visitation without concern for hours, other funerals, rules. We opened our home, and the flowers and food poured in, as did the friends, families, colleagues, and those who cared for James. It was incredibly special.
Through our GoFundMe and the immense generosity of others, costs were not a concern for James’s funeral, regardless of how we chose to proceed. Having it at home was definitely the way to go if we were concerned about budget. We worked with the Mountain Area Pregnancy Services. They provided the manpower to help dig James’s grave, although truthfully, our extremely kind friend did most of that work. Not only did he dig the grave, but he beautifully prepared the entire site – he mulched, he trimmed the tree, he arranged greenery. He truly went above and beyond. Witnessing his gift of helping – without even having to ask – was one of the many acts of love we’ve experienced. A foundation called 335 Heart funded the coffin without us asking (our PACT team coordinator handled this for us).
The biggest benefit was the service itself. We were able to do it exactly as we envisioned. We read our eulogies to him, we played him a song that had special meaning, we held him through the whole service. We were outdoors, not stuck in a stuffy building with no significance to either of us. We were in our yard – a place where our children have experienced the joys of childhood. Some might think it morbid to hold your dead child, but it was incredibly special to have him there in my arms while we all said goodbye to him. He was still my little boy, even though his spirit was gone. I could not have allowed anyone else to have laid him down in that casket. If it had been someone else, I would never have been able to stand it.
5. What about young children witnessing this?
Death in this country is handled so much differently than in other cultures. In many other cultures, the family of the deceased handles everything – bathing the deceased, dressing the body, burying or burning the remains. Visitations can be extended for days.
Here, instead of being a natural part of life, death is separated from the living experience. This is even more obvious when a child dies. Death happens in hospitals and then the power of that experience is lost in muted, artificially lit surroundings with bodies that have been made to look “life-like.” Death is contained in funeral homes, in stilted visitations, in cemeteries and crematoriums. But life and death are a continuum, and the home burial acknowledges and embraces that. The power of death, the need to experience death as part of life, has been lost.
Our children were as much a part of James’s life as we were/are. They talked to him, played with and around him, loved him. They love him still. Separating them from this last part of his life seemed wrong. It seemed to only perpetuate this taboo surrounding death. They witnessed his passing, they saw him lying at home in his cot, they began to grasp that he was gone and wasn’t coming back. They helped bury him. They brought joy to a sorrowful situation that only young children can. I firmly believe that seeing James buried, witnessing his entire life will only help them as they grow. Maybe one day, the death taboo will exists no more.
What bothers me is that people don’t even know that this is an option. Because of the way our society works and handles death, people naturally assume that embalming and a funeral home must be involved. This isn’t true in the state of NC (of course, this varies between states significantly). Even those working in the PICU did not know that it was legal for me to leave with James’s body. I heard secondhand that there were many frantic phone calls made before we left the PICU. In the end, I just walked out with his body. I had done my research. My heart aches for the mothers that don’t know this option exists, the mother that must leave her beloved baby behind – even when parting with her is anathema to her broken heart.
For us, a home service and burial was a door that opened onto the healing process. I am forever grateful for this opportunity. I plan to make it my mission in the next months to years to bring multiple Cuddle Cots to Mission Memorial Hospital and to help educate grieving parents on the beauty of a home service and burial.
If anyone reading this has any questions, I am happy to answer them. You can email me.