Ramblings of a Mad Mother
by Kara L.C. Jones

"A major difference between care and cure is that cure implies the end of trouble. If you are cured, you don't have to worry about whatever was bothering you any longer. But care has a sense of ongoing attention. There is no end. Conflicts may never be fully resolved. Your character will never change radically, although it may go through some interesting transformations. Awareness can change, of course, but problems may persist and never go away. Our work in psychology would change remarkably if we thought about it as ongoing care rather than as a quest for a cure."
-Thomas Moore, excerpt from the book Care of the Soul, chapter Honoring Symptoms as a Voice of the Soul, section Care vs. Cure, published 1992

Introduction
Since my own son died 6 years ago, many many many bereaved parents have come in and out of my life. Some have become friends. Some have floated in and back out. Some have brought resources in the form of insight and care with them. Some have offered contributions to this Journal and other publications I've done. Some of have shared photos of their kids who died. Some cried with me. Some have laughed with me. Some have gone swimming with me. Some have joined me for dinner at a local or distant cafe. Some have had IM sessions with me at three in the morning. Some come as a result of my work here at KotaPress, some from my work with the MISS Foundation, and others from my work as an artist with HennaHealing.com, galleries, or workshops.

From their willingness to share their experiences, I've seen so many things. About death and dying. About grief and healing. About family and friends. Not all of it is pretty. Some of it is downright ugh-ly. But it has all be educational to say the least. The following are just random ramblings about various subjects. I offer them as clips of what I see as the "state of our culture" in its ability to care for the bereaved vs. trying to cure the bereaved -- people only want to cure the bereaved so they can try to not hear about death and dying anymore, so that death can be shoved in a closet, and we can all pretend that we don't fear mortality. Sad? Yes. Cynical? Yes. True? Definitely.

So for what it's worth:

Disney is fake
For my son's fifth birthday -- which is also his fifth death day -- my husband and I could not handle the reality of grief and wanted to just escape. So we decided to go to the movies. We chose to see Finding Nemo because we wanted something light, something escapist, nothing too heavy. The theater was PACKED as the film had just come out. As I saw all the FIVE YEAR OLDS around us, I began to wonder if this was not a mistake. And then the movie started and I was CERTAIN this was a mistake. The opening of the movie is the man's (well, fish's) wife and children being eaten! They are all dead. He's left raising one surviving son, and he's paranoid as hell about losing that child to death.

To make matters worse, he gets over it and la-la there's a happy ending. Some woman behind us, at the end, was going on and on about "what a cute movie! so adorable!" and everyone was like la-la-la. I was left feeling very much like I was in some alternate universe, having seen a completely different film. It's the continuation of our collective inability as a society to have any regard for real emotion. There is all this talk about "how violence affects our children," but fairy tales are the first violence we introduce them to -- and they all have happy endings to boot. So of course we all think life is like that and no one in our society can deal with the LONG TERM reality of something like the death of a loved one because in the freaking movies we feed them from the likes of Disney -- all issues are resolved in 90 minutes.

It was a strange reality to be facing. I had wanted to escape from reality. Well, we certainly had done that. Only to be faced with the harshness of why our society doesn't know how to support a family like ours, a family dealing with the fifth death day of their child. We were face to face with the catch 22 of it all. No one understands our long term reality. Making reality too difficult to bear. So we escape to the movies. To discover that the escape is training humans from early ages to be incapable of understanding the long term reality of death and dying.

Wrap your brain around that paradox.
His 5th birthday and death day sucked.

~~~

They Do Not Deserve You
People drop away like flies after your kid dies. They are ignorant. I don't mean that to be rude -- I mean they are uneducated and ignorant. They don't get it, they don't understand death and dying, they don't want to face their own mortality, nor the mortality of their own children, and they will simply never get it. And so *sadly* we end up having to face another choice of loss. We stick in there and let them keep hurting us over and over -- which frankly, after awhile, feels like letting them abuse us -- OR we chose to let them go, too. Another loss in many ways.

Yes, it hurts, but if we just reframe this for a moment, then we get to gain our sanity back. When we make this choice of "another loss," we get to stop putting ourselves in the line of abuse. The line of fire that tells you something is wrong with you -- which I can tell you, straight out, is not true. There is especially nothing wrong with you when people just accept you within the context in which you live -- the context of a bereaved parent.

Think of this in terms of racism. People of color get sh*t all the time -- I know because I've witnessed this kind of discrimination firsthand in my and my husband's everyday life. My husband, being a black man, doesn't have a choice but to walk away or to just cut the abusive racists out of our lives as best we can and move on -- BECAUSE HE CANNOT TAKE OFF HIS SKIN! So we live with the bullsh*t all around us and do the best self care we can to create a safe, growing environment that nourishes our family, hopefully to its full potential.

In much the same way, bereaved parents cannot take off their skin -- though I'm sure my husband will say we don't even begin to know what real racism is like because we can choose to simply be silent about our dead children and hide who we really are -- where as people of color can't do that. But being silent and hiding who I really am is not something I really want to do. I will not be forced to live in a closet, so I say bereaved parents can't take off their skin either. I say that people we once loved become abusive -- and maybe it is "innocently" because they don't get it or they are too ignorant to understand -- but you know what? That doesn't excuse abuse in my book.

I had a good friend who told me that she understood me. She was with me every step of the way. But, if after three years, I was still "on this subject" (my dead child), then she would have to do something about that. Well, I had forgotten she said that -- I was hungry for people who would talk to me. So for three years, she was there. In the beginning of the fourth year, right on cue, she turned on me. She felt it was time to be "over it." She told me she had lost the man she loved -- he married another woman -- and she was empowered by getting over it, and likewise, she had put up with me for three years and now I needed to get over it.

Okay, I'm sorry if she was dating the wrong guy --someone we all knew had this potential because his history proved it-- but you know what, his affair, his refusal to marry her, THAT IS NOTHING LIKE CREMATING MY DEAD CHILD. She made a mistake, had poor judgment, put up with too much sh*t for too long. My kid was dead. HELLO??? But she didn't get it. According to her, I was in "self pity land," and she felt I needed to get out of it.

Well, it hurt, but she was forcing me to make a choice. Be fake and pretend I was "better now" so she could "put up with me again" or say Buh-Bye. I was awful lonely there for awhile. I was feeling lost again. But many months later, I came to realize that I wanted safe LOVING UNCONDITIONAL people in my life. So screw that. I'll get along just fine without "conditions" for "living right" etc.

The same basic thing happened with Hawk's mom.
The same basic thing happened with my own grandmother and grandfather who have disowned me completely.

Oh well! I know it seems disrespectful, and we are commanded to respect our elders. But I do not, under any gawd or another, put up with abuse. And their treatment of me as a fellow person, fellow human being who happened to be in pain, well, that was abuse. And it is no longer okay for anyone to abuse me.

It's not fair that we should have to advocate for ourselves soooo much when we are so low, so in pain, just needing some darn support. It's not fair that people should say things like "get better and keep me in your life" or "remember your child and lose me" -- why should they pit themselves against our children. They are not even close in worth to that of our children if they force me to make a choice. They don't even compare in the same league!!!! Our children matter. ALL of our children, living or dead. And would those people say "don't talk to me about your living children anymore, get over them, gawd, why do we have to keep hearing about your living children"????? Probably not. So why is it okay for them to discriminate against our dead children? It isn't.

I know I'm rambling and ranting like a raving lunatic.

I just get so mad. They do not have the right to colonize my land. They can easily live beside me. They can stand there and say, "I don't understand" but not leave, just stand there. And I could then stand next to them feeling and saying whatever I believe. But no. They just want to bomb us, destroy us, colonize us, and then rebuild us as they want us. Well, it isn't okay. We have a right to paint our houses purple if we want. They can paint their houses beige if they choose. I'm not telling them I'll destroy their house. I don't care if they don't fully understand. I just want them to stand there. But no.

Point being, most of the people around us are other bereaved parents because they get it.
I don't feel alone with them.
And I've formed a list of rights:

You have every right to protect yourself from abuse.
You have every right to still be a mother even if your kid is dead.
You are a mother to ALL your children, living AND dead.
You have a right to miss the children who are not with you physically.
No one, not even death, can take your parenthood from you.

~~~

I think of it as discrimination
I do not understand why people feel that bereaved parents should be over the death of a baby come the second birthday (or 10th or whatever time line they put on it). Two years is just a flash. And if it were the 2nd birthday of living child, wouldn't they all be around with gifts, saying "awwww...", taking photos, even helping you to plan the birthday party?

I really think of it as discrimination. People choose to treat living children differently than our dead children. *But* also, sometimes, people don't realize they can *choose* to do something differently. That is why I also advocate that bereaved parents reach out and tell family and friends exactly what works and what doesn't. But sadly, family & friends often aren't receptive to even that kind of communication.

It's like seeking counseling. Whenever I have worked with a good counselor, someone who really understood all this, I have benefited greatly. BUT it's really the people around me who are "clueless" who could use a good therapist to work through their denials, conditions, etc. In self-preservation mode, things like yoga and hypnotherapy have been awesome for me. And doing those things for myself give me the strength and empowerment to go out and try and change perceptions in the world. All my awareness work is really just my way of working through the abuse that was hefted upon our family after our son died. I call for "a more ethically responsible" world -- that will benefit future bereaved families -- but it is really my way of saying publicly "some of our friends & family did not act in an ethically responsible way"!!

It makes total sense to me that bereaved parents often find themselves working through issues that are secondary to their child's death. Their family may isolate them because they "can't get over it by Christmas" or something randomly chosen deadline. They find themselves crying more about *that* isolation in some ways than they might be about the actual death of the child! And is it ethically wrong for our society to add guilt, more isolation, and hurt on top of the things bereaved parents already deal with in grief? YES! But there is not enough talk nor awareness in our world for people to acknowledge this publicly. So bereaved parents find themselves in more of a "private world" -- a world in which they feel they are understood "in context" -- where none of us forget that any of the other of us is also a bereaved parent.

For example, I know a woman who is a family advocate for bereaved parents. Get her anywhere, anytime, anyplace with a public audience, and she is nothing but the bereaved mother who is working her behind off to raise awareness and change our culture mind-sets. But put her in context in a room full of other bereaved parents when none of us is working, and we are just people who are at ease -- at ease enough to laugh and swim and have dinner without fear of anyone else in the room interpreting our ease as "having finally gotten over it".

I'm not saying that some things haven't improved in our generation. I do think about how things are different now compared to when our grandmothers were closeted with their grief (my gram is still alive and still closeted with her emotions). I do think some things are different and some still the same. For instance, we do still create safe environments for ourselves -- like having friends who are all bereaved parents. We still need that context, a space to breathe and not be working to raise awareness or defending our existence, etc. BUT we ALSO speak up publicly on TV, the Net, at conferences, on the radio, in classes -- anywhere. Some people are still alienating us -- BUT we are not shutting up. We are not going crazy or being committed to insane asylums or rest homes either.

So, I don't think family dynamics and cultural awareness have changed all the much yet because we are still seeing matriarchal families where the grandmothers still run things in the closet -- or patriarchal families where the grandfathers are shoving the others into a closet. But I do think the public, societal discussions are changing. As people in the current "power" positions -- whether in families or business/professional capacities -- retire, the coming generation is full of noisy, loud, obnoxious, refuse-to-be-closeted parents who will take every opportunity we can to say "treat our living and dead children with the same respect -- otherwise you are discriminating and are being a bigot."

As long as we refuse to shut up, change is coming.

About the Author
Kara L.C. Jones co-founded KotaPress with her husband Hawk after the death of their son Dakota in 1999. Since then she has been doing advocacy work for bereaved families and exploring the ways we can use art during the grief and healing process. As a healing artist, she has had many writings published, exhibited her handmade books, studied Reiki, and founded HennaHealing.com as an outlet for exploring the 9,000 year history of henna uses during ritual and celebrations. She actively participates in and adds to that history by practicing the art of henna on skin, wood, paper, cloth, and canvas.