What is death? It is loss, it is an end, it is final. It is emotional, it is scary. It is in many ways inexplicable. When I look at Talia is see the mystery of death, but I also find it important to focus on the medical realities of what death literally is. Death is malnutrition, it is dehydration, lack of oxygen, or infection. It's a heart beat that stops. This death is coming for us all eventually. It is the one unavoidable fact of life, no matter what method we may use to delay its arrival. It is also the reality that we don't typically discuss instead leaving death to the world of metaphor and mystery.My husband is a cardiologist who has seen death up close. He has seen young people pass away unexpectedly and old people fight for every extra day. he has seen families unwilling to let their loved one go and therefore knows what a prolonged death looks like. He shares these stories freely with me, sometimes in the middle of date nights, as a way of processing his day. The both of us trying to make sense out of other people's senseless tragic stories. In a way, it was good training for the tragic story we currently find ourselves in. I'm grateful for his experiences and those of his GI doctor father. We are able to have a clear eyed vision of Talia's demise and therefore we are able to unite for our vision of the rest of her life. We are dedicated to ensuring that her journey will be free from medical intervention designed to stave off the inevitable. We don't plan on doing a G tube even though her body will someday lack the ability to injest food orally. We don't plan on medicalizing her short life on this earth in the hopes of getting a few more days, months or years with her. The decline of Talia's body is guaranteed, the pain that decline will cause her is the only thing we plan to assist.David and I engaged palliative care immediately upon diagnosis, and it's something I wish every patient with a life limiting disease did. In a typical doctor's office they are examining their subspeciality. Meet with a GI doc, they will counsel you on feeding tubes, meet with a pulmanologist and you'll hear about in home oxygen and pulse ox machines. Meet with a palliative care doc and take a step back and hear about your child's life. Take time to reflect on your goals. Make purposeful decisions. Choose your path. In the absence of palliative care, or a good peidatrician who understands palliative care, the medical system can sometimes push you towards a different path than you may have chosen if you stepped back. Once you've started down the medical woods one decision rolls into another. If you get a G tube, then you've taken care of the nutrition aspect of your child's death, the next obvious step is to address her risk of infection, or low oxygen intake and before you know it, you've moved the entire hospital into your home and your baby is now your patient. If that the course you've intended, then your path is clear and there's support out there for you. I'm writing to let people know that there is a different way to go too, and though it will be challenging, and it may be shorter, it will be beautiful and painful in its own way.I want to write openly about Talia's decline without the assistance of a feeding tube because it's the one thing I scoured the internet for immediately upon diagnosis. I want to hear what death is, I want to know that the process of dying, apart from the emotion of it, doesn't have to be a painful thing. I want to champion palliative care as a means to help children and adults get the death they seek rather than the death the medical system works so hard to prevent. I want us as a population to be informed patients and informed advocates for our loved ones.My philosophy of care was formed even before diagnosis. As the weeks of speculating as to which terrible disease Talia would have rattled around in my head I prepared myself for a lifetime as a caregiver to a medically fragile child. I prepared for fights with state agencies and fixated on finding residential care facilities for when Talia aged out of the child system. I couldn't sleep thinking how aggressively I would fight for my child. Then suddenly I was confronted with a diagnosis that I knew to mean certain death. A disease that has been around for hundreds of years, a cure that has been hunted for decades without any significant progress. A diagnosis free from hope. Yet I knew, even in that first week that lack of hope of survival also meant lack of hunting down doctors, lack of disappointment at the slow medical system. It meant a freedom to focus on my daughter as a being, not an experiment. It forced me, and continues to challenge me, to accept Talia as she is now. With an end that is free from doubt I also can feel justified in my minimal intervention approach.Talia is 19 months and can't eat or drink without a great deal of effort on our part. We feed her through a 'Take and Toss" sippy cup with the hole enlarged. I feed her baby food purees mixed with apple juice. She drinks chocolate milk and delights in ice cream. I hand feed her peanut butter and mozzarella and give her tastes of whatever we are eating for dinner. Sometimes her mouth cooperates and the muscles chew. Sometimes she gets lost in a sucking her tongue and needs a break from food. She spends most of the day eating yet takes in few calories, but she also expends very little energy. I don't have a preset amount she needs to consume during the day. I converse with her body daily and when she's content, I let her be. She can breathe fine, except for occasional choking on mucus. She has thus far avoided getting any serious infections, but not because of any extensive hand washing routine or keeping her secluded in our house. She is out and about and held freely by everyone. She's free from infection because, as one doctor put it, 98% of her body is still doing it's job. When Talia sits in her stroller she appears to strangers as a calm content baby. That is perhaps the hardest part of this disease so far. How can she look so sweet and yet have such a terrible disease? I haven't yet experienced the sympathetic, curious looks from strangers when they realize they are in the presence of a disabled person. It's not something I'm trying to avoid because of my own vanity, its simply that Talia's comfort is my key, and she is plenty comfortable in her regular stroller. Well, maybe it's not that simple. It IS a choice I'm making purposefully to assist my own vision of Talia as a baby, not a "disabled" child. It is, to a certain extent, about my lack of desire to speak to strangers about her disease. It is to keep us in a bubble and early childhood rather than in early decline. The flip side of the coin is that now strangers ask me Talia's age and when I tell them I then pause ready for their follow up questions "Does she walk yet? Is she getting into your others kids toys? Blah blah blah." The small talk of life is one I always tried to avoid, and I now find completely unbearable.