6 Years (and Holding)

Coming up on another anniversary has gotten thinking about past anniversaries, and trying to figure out what to do each year to mark this occasion. I am a very ritual focused person--doing things to mark days, events, happenings. Those kinds of things are meaningful to me. But it seems like each year, I feel like I need to come up with something new, something more "honoring" in some way. I am pretty sure that isn't a good way to think about it, but it feels that way to me. The anniversary of my son's death feels different than all the other significant days--his birthday (we always do something fun, we get a cake, we get balloons, we let them go), Mother's Days, Diagnosis Days (I even let that one pass this past year with nothing to speak of significant happening), but the Day of the Death, seems different. Impending, it brings up all the questions and the unresolved "issues" I carry around with me. It looms.

The first anniversary of Theo's death, we went away to the beach. It was really mild February and there were very few people at the beach so we had it mostly to ourselves. I had a huge tantrum at God on the beach. Throwing sand, shells, pieces of driftwood as far as I could into the infinity of the ocean, throwing myself on the sand, beating and banging on in, jumping up and down, screaming, screaming at the top of my lungs "WHHYYYYYYYYY!!!?!?!?!?!" and "WHERE ARE YOU!?!?! WHERE ARE YOU?!?!," meaning God, not my child. But underneath meaning that too. Where was he exactly? And still, why? Why had this happened to him? To me? And how? How did it happen? "It's like winning the lottery, except backwards." One of his oncologists actually said that to us. Luckily she was a really sweet woman who I loved and still do and will never forget how she came to our house to see him. But yes, it was like that. A backwards lottery. The chances that my child would have a tumor like that were so slim--the chances really are better that I will win the MegaBall on Tuesday. Seriously.

I questioned, I railed, I challenged and begged God to please reveal to me, Why? and How? How was I supposed to live the rest of my life this way? And then what happened? Nothing. More wind, morewaves, in and out. Seagulls crying at me. Stupid woman on the beach. Snotting all over the sand and her sweater. I decided that I couldn't live that way, wondering, questioning. Questioning why, what, how, where. With no answer forthcoming that I could see, then, or potentially, ever. So. I decided to try really hard to live like some other people I know. Caring people, wonderful people who are full of goodness and love and heart and humor, but for whom the questions of God and Spirit never seem to be much of a bother. I don't mean people who go around living with blind faith, believing what everyone else has told them is true, and so therefore they don't have to question anything, but those people who have decided that those kinds of things just aren't that big a deal in their lives. That they can be happy, productive, peaceful, contributing citizens of the world without religion. I decided to really try hard to behave and act and feel like a person who hadn't spent a couple of decades or more seeking, metaphysically, spiritually, psychically, trying to figure out who I am, where I fit in, how to be closer to God, who God really was/is, how to find that connection…on and on. It seems I got the shittiest answer possible to all of my, "What is my purpose, what am I meant to do, just show me," pleadings that I'd put forth to the Universe fairly regularly for so many years. I figured shortly after my beach tantrum, that trying to find answers, connection, solace in something that didn't seem to recognize that I was there screaming and pounding on the beach, my heart and my spirit rent to shreds, that those kinds of questioning and never finding answers would just wear me down to an emptier shell of a human (if that was possible) and so I tried to just let it be and see if by doing that, maybe the answer would come.

I do find some small measure of comfort in this quote by the poet Rainer Maria Rilke
"…I beg of you, try to be patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign
tongue. Do not now seek the answers, which cannot be given you because you
would not be able to live them. And the point is to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answers." And I don't mean to understate what that quote means to me by saying I get a small measure of comfort. I think those words really allowed me to be ok with just letting the questions be. And that is pretty huge.

I tried to do what he begged and did feel better. I know though, that those questions are still there. I have a really hard time loving locked rooms. I want to open them up. Closed doors make me feel shut off, closed in, as if there is probably something really bad behind them. Locked doors make me feel like Bluebeard's wife. I just want to get in there and see what's being hidden. And you know what happened to her. But still, my heart says I want to see what's there rather than wonder. Or trust, I guess. I do know that what we wonder and imagine is generally far worse than the reality. So I'd just rather see. And in the case of the wondering and imagining, where is my child?, when he has died and gone someplace…someplace I can't know about or see or even begin to imagine. And for all those people who don't have any idea what it's like to have no way possible to see, touch, feel, smell, even have a small, quick removed look at where my child is, what he knows, what he sees, what he perceives, what he experiences, to those who don't know what those kind of wonderings are like, who might say, "Oh, you can't think that way. You must have faith that he is in a better place, filled with peace and love and light." Those people can never understand. Maybe those things are true. But we cannot really, really know. Those of us who have children who have died, cannot know those things. Imagine trying to simply go on faith that your child is simply okay someplace else. Indeed, who simply goes on pure faith when we send our living children out someplace? To school, to dance class, to camp, to a friend's house for a sleepover, to sporting events, to day-care, to a church lock-in, to the mall or the movies with friends, off to college. Imagine not bothering to check into the programs, having no clue at all about what they are doing, what the place looks like, whether it's safe, or clean, or wondering whether the people who have them in their care are trained, do the administrators check on their staff's backgrounds, do reviews of staff performance. What person who has a child, no matter what age that child is, would feel fine with no idea, no clue, no real inkling of where her child is, what that child is doing, whether that child is truly safe and happy. Wouldn't any good mother want to know what her child's surroundings are like, what her child thinks about, where he is, what he's doing?

I did find a book I happen to love (and which I guess I should re-read) by Sukie Miller called Finding Hope When A Child Dies: What Other Cultures Can Teach Us. It shows us all the things that we all have in common with parents across cultures all over the world and what we all go through when our children die, but also tells of things that our culture (so based on the Judeo-Christian tradition and its systems of spirituality) doesn’t teach, or even allow. Did you know that there are some cultures where shamans help parents to know where their children are and what they are doing after death, even have ways to allow them to do things to continue to parent them on the other side. Of course that not being my own teaching from childhood, it's hard to actually believe it, I don't think I could really join with it, and have that be my experience of my son. But knowing it as a possibility elsewhere, holding open a space where that is possible, seems to comfort my heart a bit. I recommend that book to anyone whose child has died.

Anyway--coming up on 6 years tomorrow, missing him has not abated. It's never ok that he is not here. I am not debilitated anymore, I have plenty of love and good things in my life. But I don't have Theo. And I never will. Not in this life--and I don't even know for absolute certain that I will see him or be with him after this life. I hope and hope and hope and almost really believe that I will be with him again. But I don't really know it. Not like I know that the floor is going to be under my feet when I swing them out of the bed each morning. And that is never ok. And I still feel the pull of those questions and the anger at the complete destruction of my belief system, held so close in my heart for so many years, and I am still wandering in the ruins of it. How long will this go on? I don't know. Yet another question I try to simply hold. I haven't yet come even close to following Rilke's plea to "love the questions." I just do the best I can to hold them without having to worry at them all the time like a dog at a bone that won't crack open(damn those locked rooms).

Trying to be ok with learning to be curious about other things, learning and growing in the grief. Holding the mothering questions in a fragile bowl knowing that tearing them to shreds won't bring me the answers. And maybe, maybe, maybe someday I will live my way into the answers. Not much comfort but that tiny modicum feels more peaceful than the renting and shredding. But I do also know that there is most definitely a place for renting and shredding. We do what we have to do.

The only thing that I do actually feel I really know for sure is that my son's spirit
lives on. The essence of him is somewhere. That I do feel is true. When something feels true to me, really feels true to me, I am rarely wrong. So that I also feel comforted in. I know that grief shatters what we believe to be true. Our belief systems, our assumptions of truth, are destroyed. When you come to a place where you really do know now that things don't just happen to other people and anything terrible can happen anytime. Really. Everyone is different. After the devastation of grief, some people can find comfort in faith and their beliefs and have even a stronger connection to Spirit. I know that's true. I just guess I'm not one of those people. That only serves to hurt more. But I also take some insensible pride in it. I think for myself. If God didn't want me to think for myself, I wouldn't have the capacity to doubt or to question. I am rather thankful for that ability. I think we are meant to question and doubt. It's just when the whole thing comes tumbling down, it is really hard to see how to put it back together. The hell of it is that once it all falls apart, the pieces get completely transformed. Like a puzzle that you thought was mostly completed, which then gets knocked off the table, pieces all over the place, under the sofa, you're finding bits under the refrigerator months later. But once you pick them all up and put them back on the table, they images on the pieces and the shapes don't even match
anymore. It's a whole different picture you've never seen before.

Before my son had a deadly brain tumor, I never questioned the existence of God. I knew for sure that I was taken care of, I felt protected. And then I didn't. I remember the very instant I questioned, really questioned, actually thought, maybe there really isn't a God. I was on my knees in one of the parent sleep rooms, (made possible by the Ronald McDonald House), in the PICU, all the lights off, in the dark, city lights coming through the venetian blinds, casting bars on the industrial carpet, begging God to save my child, heal my child, restore him to health. I was even trying to make deals. And then immediately feeling angry that I should have to be reduced to making deals, and then feeling chastised and scared that by having such thoughts I was courting more punishment, and pain, and then becoming reduced simply to wails of pain and tears and only pleading. And stopping to wait silently. To feel, to hear…something, a response, an answer…I felt nothing, no one. Nothing and No One. It was the feeling you have when you knock on someone's door, and you wait, and hear nothing, and you just know it's empty. There's no one home. It was like that. God was not there. Maybe never had been. It was kind of shocking and also rather mundane at the same time.

Now, I don't believe that God doesn't exist. Atheism just doesn't fit who I am. And also, if I believe there's no God, then how is it possible to feel the truth of my son's continuing spirit? I don't know--would that be possible? Maybe that's just another question to hold. But I don't believe that God doesn't exist. I do believe God exists. An all-encompassing God, a conscious intelligent creator force that knows me, knows you, knows us all. But then, if that force is creative, is it also destructive. But there are also all those serendipitous, synchronicitous, kismetic experiences that I cannot discount either. How do perfect congregations of time, place, space happen, if not for some Providence? Or Perfect Storms for that matter. I know it can also be a function of our amazing brains which try desperately to make sense on nonsense. But still.

I came to a place long ago, before the birth and death of my son, where I realized the rightness of Truth is One, Paths are Many. No one has The Answer. This is what I love now about Buddhism, that there doesn't have to be an Answer. Even Buddha himself said to his followers when they asked about the existence of God and of Heaven. He said that he did not have the answers to give them. That we must each find our own answer through our own experience. If one must question a sage, a preacher, or a teacher (or a Buddha), about the existence of God or an afterlife, or what it is like, or what is right or wrong, then he or she will always rely on the answers of someone else. Which is what I had been doing my whole life. Clearly. At what felt at that time like the most desperate moment of my life, I was ready to fall back on a punishing, withholding, quid pro quo God who would deign to heal a tiny, blameless, beautiful, innocent baby of a terrible and devastating illness, only if I promised to be a "good Christian" and travel the world with my healed child to hold up as a shining testimony? Why would God have to be like that? Why was such a terrible thing happening to us anyway? Why should I even feel the need to make such arrangements, as if I could possibly have an effect on the reality of the situation. And at the moment when I needed those answers the most, they were not there. They still are not. Sitting with, holding the questions, coming to a place where we can just be with the truth that good and bad things happen and we are not in any kind of control. Perhaps that is the path to sanity and real peace.

I can feel the teeniest bit closer now to the truth, my truth. I still don’t know what that Truth is yet. How long will it take? I don't know. I try to hold the questions. I try to hold the curiosity. I try to see the beauty in the midst of the pain and ugliness. In the world, in a snowflake, in my daughter, in a blooming flower, in peals of laughter, in the time that my son existed physically in the here and now and I was able to experience his realness with all my senses. I hold those things right next to that the pain that he is no longer here. I will never experience him here with me physically ever again. I will be forever missing him. We will always be a family of four that looks to everyone else like a family of three. I was and am completely transformed by my loss, and by my grief. I don't like it, but I don’t have a choice about it. Or maybe I do, but I don't see what choice I have if there is one to have now. Not one that makes a difference to my short sighted, mortal, longing motherness that wants only to hold, smell, touch and hear her child.

So tomorrow, to honor our son's everlasting mark on our hearts, his too short time in this world, and mark the date of his passing from it, we will visit the Children's Museum to watch his little sister ride the train and paint, and run and slide, and look at fish, and then we will go to an awesome restaurant for lunch. We will do this as a family and will remember every second of the day that we are a family of four. And I think Theo would be very happy about the plans and I
hope that his spirit flies with us on our journey, not only tomorrow, but every
day of our lives.

In memory always of Thelonius Luther Helbert Fueglein, known to so many as Theo, and to his sister as "Brother". We love you and miss you every second of every day.
05/26/2005--02/20/2006