truth

What is there to say about Kara L.C. Jones, aka Mother Henna? She is an inspiration, a caregiver, a mother, and a force to be reckoned with. Kara is the coach, heARTist, and creative grief educator behind everything you see at MotherHenna.com as well as mom to Dakota and Mizuko Star, both dearly loved and missed every single day. We are so grateful she is here at Glow today as a guest writer. Join the conversation. —Angie

The truth is, I still get jealous. The truth is, my whole life is a process of learning to live this life I did not ask for, want, or ever dream of at any point in my youthful visions of what it would mean to be an adult. It is a full thirteen years since the stillbirth of my son Dakota. It is two years since the twenty-week miscarriage of my son Mizuko. And yet, just today, friends posted a viral article about a one pound, twenty-one week gestation baby who survives in NICU and holds his mother’s hand.  Several friends posted it with commentary such as: “Miraculous!” and “God is so good!”

Bull.

Now, I have absolutely nothing but love and gratitude and relief in my heart for the family whose child survived such slim odds. I would never wish the death of a baby on any mother. But I catch myself to this day with very different feelings about sentiments of the goodness and the grace of God. 

I often find that friends who truly believe in this goodness and grace, well, simply don’t understand (and never will hopefully) what it means to question faith. I’m glad in many ways that they do not understand, that all their children are living, that they have the luxury of believing in such goodness and grace.  But I still catch myself with the gremlins raising their heads in full jealousy and angry retaliatory thoughts in response to this naivety. I find myself thinking, if there is some higher power behind the parsing out of, grace over there for them, and crap over here for us, (in terms of “allowing” one child to live and letting the other die), then that is one discriminatory load of bull that could never, not in a million lifetimes, never, ever serve as spiritual sensibility to me.

The truth is that I still feel disconnected from those who have the luxury of belief, expressed in this off-handed, Facebook comment, kind of way. I can connect with them on other things, but I remain disenfranchised from their reality. And they from mine.

The process of being alive and living fully now is a totally different creature for me. As easily as they toss out commentary about the grace of God, I am equally likely to talk to you about death over the appetizers at your dinner party.  But let's be honest. There are not many dinner parties where you can get away with being that real.  The dinner parties I speak of here are not those of the surface and luxury as with the friends mentioned above might host. No, these are the dinner parties where all party name tags say things like:

Hi! I’m Sarah. I’m a dead baby mom.

These are the spaces where I have the luxury of being real. These are the spaces where I am given the grace and space to speak equally about my living children and my dead children. These are the spaces where people may take or leave the Bible, but they are darn sure reading Miriam Greenspan’s “Healing Through The Dark Emotions” as if it were gospel.

Yes, resilience and connection are important for bereaved parents learning to live life again in the face of grief. But the truth, for me personally, is that the resilience and connection do not come from the same spaces they came from prior to Death’s visits to our house. Resilience and connection have been totally and completely re-defined, just has every other aspect of our lives.

I think this is what gets lost the most over time and in the surface of our busy, schedule packed, social media driven, modern (said with much sarcasm) lives. Bereaved people do not “heal” as in it is all over and fixed and they get to go back to some naively luxurious point of view about anything. Their whole lives are re-defined. My whole life is re-defined.  

I do not look at some viral social media story about a one pound, twenty-one week gestation baby who survives and holds his mother’s hand and respond with, “God is good!” No. Nope. Not. Rather the breath is sucked out from me the moment I see the fragility of that child’s body, and I begin utilizing any ritual I can think of: chanting mantras, sending Reiki, rubbing rabbit’s feet, tossing coins into wishing fountains, all in the hope of keeping death away from that family.  All the while, I know these are the only human actions available to me to fill the time and dampen my anxiety, same as prayer to a God, whichever God you chose.  I know how random it all is. I know God is not always good. I know how quickly circumstances can change.  I know what it means to lose your whole life to the NICU with the hope that one day you’ll be able to carry a living child, and not a dead child, out of the hospital with you.

The truth is, my whole life is a process of learning to live this life I did not ask for, want, or ever dream of at any point in my youthful visions. The truth is, I still envy my friends who so firmly believe. The truth is, nothing in my own experience is easy or surface now. I can make a show of skimming social media. I can make a show of skimming the la-la dinner parties. I can make a show of rubbing rabbit’s feet. But my heart is in the depth of death and life now. My heart is in the Death-Talk Over Appetizers. My heart is in knowing that God was really stinky to many families.  My heart is all about being honest with myself when I am jealous of those who really believe God is good. My heart allows for me to breathe, to not bother them with my jealousy and death perspectives (because I don't want them to understand anyway!), and to allow myself the space to live in a wholly different reality now.

The truth is, my whole life is a process of learning to live this life I did not ask for, want, or ever dream of at any point in my youthful visions. The truth is, the best I can some days do is stand up and tell you,

 Hi! I’m Kara. I’m a dead baby mom.

How has your understanding of God, Higher Power and/or grace changed after the death of your baby(ies)? What is your relationship with the idea of grace, or stories about "miracles"?