Tuesday, June 26, 2007

Rainy days and Mondays, but its Tuesday

I am having a down swing the last couple of days. I don't even bother putting on make up...may not be very pretty, but it frees me up to cry at will without it being quite so obvious. I guess you could say I am doing a fair amount of wallowing. I have no idea what makes the urge to do that come and go the way it does. Some days I truck along doing pretty good, still missing him, but with an inner strength that feels a lot like stubborn pride. And then the wind just leaves my sails and it is as if I realize it was all a ruse, trying to fake out both myself and everyone else. I listen to the music from Les Miserables and Variations on Pachebel and the tears just come and come and come, mostly in the car. Its not the same exhausting slam that it used to be. It is more static and constant, like simply turning to view my life from a slightly different light angle, like one of those billboards that look one way and when you drive closer they suddenly look different. Always there, just not always showing. Its showing the last few days. It isn't cold outside but it looks it and that is about all it takes to bring it all back again. The rain makes me want to hold him. I had pure, poignant visions this morning that found root in a desire somewhere in the middle of my chest, down into my soul, of wanting to hold him again, to rock him, to tell him I'm sorry Baby over and over again, to take all his suffering into myself. I wish it had been less horrifying. When I think of all the pain and terror and loneliness he suffered my heart breaks all over again. And I can't seem sometimes to stop myself from thinking about it. Last night was the first wakeful night I have had in a while. I just could not make the images stop. It literally feels like a hole in the middle of my chest, down into my womb...as if I might peer downard and look inside and through myself to the nothingness residing there, or perhaps just back into the past that once filled that space. I have two new books I am reading. A Grief Observed by C.S. Lewis and Lament for a Son (whose author escapes me at the moment). One is angry, one is mystified with sadness and loss. Both apply. Both have so much truth in them that I can only read them a few pages at a time. I wish everyone had to read them. I wish everyone could somehow understand. I get so angry at how isolating this is, that nobody else can feel this pain. Even other parents who have lost cannot feel MY pain. Their pain is similar, but it is theirs. This is mine. I am not at the point yet where the sacredness of that gives enough value to offset the loneliness and desolation of it. The idea of not hurting anymore is abhorrent to me. I do not know what I want. I would not have wanted him to keep suffering. I would not want his passing to pass through me without this agony. I would not want to succumb to this darkness. I wish I knew where he is. I wish I knew how he feels. I wish I knew who he is now, if he remembers us, if the pain is gone, if he is out there, feeling and watching me though I can't feel and watch him. Some mornings (this was one of them) I am just stunned to realize once again I woke up and found it was not all a dream.

Sunday, June 24, 2007

Sunday night

Evening is falling. It has been a good weekend here....a hard one in some ways, but one I would live over and over again if I could. Joe and I painted the entryway this morning and he worked some on the fence this afternoon while I ran errands with Nick and Alex. They have taken to riding their bikes down to the park nearby. They were told to be back at twilight, which it is now, and I am anxiously trying not to appear to anxious as I wait for the sound of their voices in the garage putting away their bikes. We had a big Sunday night dinner tonight...a medium rare roast beef, roasted potatoes, roasted garlic bread, spinach salad. The kids adore our family dinners together and practically trip over one another in their eagerness to talk about their days, time with their dad, things they have done while apart from us for a while. One of my greatest regrets through Joseph's illness...the demise of family traditions and how starving these two obviously were for the serenity and security such traditions provide. We are having to re-train them on basic table manners but they don't seem to mind. They are eager to learn, eager to please, eager to talk, eager to share. Nick even ate spinach tonight. Anyone who knows that kid knows if it doesn't contain sugar or transfats it usually doesn't appeal to him. We are all growing, branching out, finding the courage within the differentness. I am proud of them every day.

I sometimes quiz myself on what I am learning from Joseph's illness and subsequent death. Sometimes good things, sometimes not so good. I often wonder how long I will linger here. Suddenly a lifetime seems so very long. I find myself too watching those I love, savoring, worrying. Alex has an MRI tomorrow....he gets one every six months to check for regrowth of his brain tumor. I will be glad when that is done and negative. I beg God for it to be negative. It has to be. I find myself listening as I curl my body around Joe's at night, my cheek tucked to the rise and fall of his chest, his arm heavy and protective around me...listening to the sound of air filling his lungs and being expelled, the sound of his heartbeat. I concentrate on the warmth that is him, the slight humidity where our skins seem to fuse, the energy of his life flowing in and around my own. And I fear. I savor. But I fear. I know too well any one given day could take any one of them from me. It is no longer a foreign idea far off. It is imminent. It is a threat and it is powerful. It makes me tremble as I smooth Nick's red hair and watch him growing like a weed, almost as tall as me now, as I marvel anew at the engaging whimsy of Alexander's dimples. I can no longer believe that it cannot happen.

There now...they are home. I can breathe again, this time, for now.

There was a television ad for some news program showing tomorrow, talking about the potential life saving properties of umbilical cord blood. It was a normal Sunday morning. I was making sausage and bringing Joe coffee; he was watching his Sunday morning show. It slipped in with such stealth and cunning. No warning at all. Just suddenly this commercial, speaking of things I know all too well...and the shocking engagement of fury in my breast, the sting of tears that well from a place further up near my chest than what used to come. I was livid. He had umbilical cord blood. His cancer was gone. Getting rid of it, making room for that transplant killed him. He is dead. I know no respite from that boiling rage. We did everything possible and I would not change having done it. But it was not enough. I am getting easier with my grief, better at letting it wash over me, better at not trying to hide it from Joe. It doesn't seem to trouble him, these waves of unexpected tears and rage. He holds me and simply says "I am here". And strangely, thankfully, like a child I can curl there....until the wave has passed and released me once more from its grip. It makes me less afraid of the violence inside me, knowing he has a strong heart for me to curl within and take refuge. All he can do is bear witness. And this he does with love. It surprises me sometimes how badly I can feel inside, and yet still all my body will release are hot, silent tears. It ought to be a destructive force, but all I can manage is a whimper.

I see many blessings in my life, many hard battles ahead. Tonight I am glad for the blessings.

Saturday, June 23, 2007

Saturday Morning Musings

So this is where the rubber meets the road..the point throughout high school and my sporadic 17 year span of college attempts where my spirit becomes restless. The first tests are finished and I have, I hope, done reasonably well. Algebra yielded a 91%, which my head wants to be discontented with but logic tells me an A is an A on my transcript and if I go through Algebra making As I have what I want. But I also tell myself anything below a 90 is a failing grade. And it honestly is. There are 40 slots in the nursing program and over 250 applicants each semester. It leaves little wiggle room.

But I have discovered my natural inclination in life is for short, lively, exciting bursts of energetic effort that yields tangible results. I used to think I was just lazy. I don't believe that is true anymore. I am just not particularly tenacious when it comes to physical or mental sweat unless I can see where it is paying off. Usually about this point in a term I start to resent the time I must spend studying and not getting to read for pleasure or I see I am making pretty good grades and get a little egotistical about my ability to pass without really studying. But that won't cut it now. I honestly need to know this stuff for my career. Everything is pertinent to other things yet to come that I also must learn. I think often of Joseph locked up in his hospital room for weeks on end without visitors or change in scenery undergoing a tremendous lack of privacy and often a great deal of pain, frustration and humiliation....all without any real lack of control over what the end result would be. We were shooting for a cure..we had to get 100% or we would fail. But much of it was beyond our ability to affect. I remind myself that is not the case any longer. I only have to get 90%. And whether I attain that magic number (or hopefully beyond it) is completely within my power.

I admit I have to remind myself of this daily. Everything in me cries out "Unfair!" I read so often of other parents who have suffered a loss who have not returned to work at this point, who some days don't get out of bed, who leave work early regularly, who don't leave the house. I can bring myself to envy that and worry I am not taking enough time to feel the misery of my loss. But the truth is, I carry it with me. It is perhaps the most portable emotion I have ever felt. It sits in my chair beside me when one would assume there is no room. I set it on my desk in Biology class and reference it regularly throughout the lectures as we discuss the structure of a cell, its various functions, the fact that one small molecule substituted for another, even if they are tremendously similar, can yield disasterous results for the human body. It makes my pulse quicken, my breathing more shallow, stirs within me a restless need to explain to whomever might listen how this small gem of information applies to my life. But it is a lecture and so I sit, squirming mentally as ideas and memories link with new information and clearer knowledge, tangent after pertinent tangent stirring powerful emotions into the task of learning. Tidbits Joseph's doctors taught me mingle with basic biological concepts until soon I am formulating more questions, turning molecules and cells over and over in my mind, constructing the whys and the hows, all the while marveling at the incredible miracle that is the human body and that it ever works properly at all.

We discussed apoptosis, the death of a cell, usually programmed to happen by mother nature. Ah ha! This is a word I know well. It is one of the key components that made Joseph's leukemia so virulent. Apoptosis malfunctioned in the abnormal white blood cells, the leukemia, the malignancy. They did not die. They replicated themselves over and over and over, each new replica as flawed and unable to function as its parent cell was, stuck in an immature state where it could not do its job, could not fight off disease or carry out any of the duties white blood cells have. It just misbehaved, recklessly reproducing, eventually so numerous and crowded that it squeezed out the bone marrow's ability to produce any new blood cells at all, until by the time Joseph was first diagnosed, he had no white blood cells in his body. His marrow was 100% cancer cells, his blood stream filled with them circulating, squeezing out red cells as well, making him feel terrible, making his organs start to shut down. All because when his particular kind of cancer forms, this notion of apoptosis, programmed cell death, was turned off. Of course this is not the only property that makes a leukemia cell. But it is one of the distinct characteristics that make it so aggressive and dangerous..and perhaps one of the main doorways that in time will let us find a cure or at least get a leg up on it and slow it down.

I'll find out today what I got on my biology exam. I dreamed I got an 80. I was so relieved to wake up and it was just a dream. I sincerely hope it is at least 80+10.

Friday, June 22, 2007

Nick has been back from his camping trip in Colorado for almost a week now. We got this picture of him this week from while he was there. He got to go mountain boarding (that is what he is doing in the picture) as well as white water rafting. He had a marvelous time, though came back with his leg half gouged out from trying to pop a wheelie on this thing. My son the genius. What is it about kids, boys in particular it seems, that makes them so driven to pit themselves against the general principles of physics and such?
Joe and I have a busy weekend planned. I am going to finish unpacking the last of the boxes (I hope). We are knee deep in the land of We-Have-Too-Much-Sh*t. I am going to have to sacrifice some of my books to the gods of Half Price Bookstore. He and I are both heavy readers and there just plain isn't enough room. And imagine my surprise to discover while unpacking that this man has more clothing in his line of oxford cloth shirts alone than I do in my entire wardrobe! It has been interesting trying to meld the lives of two grown adults who have lived independently for five years. But it actually is going remarkably smoothly, which is gratifying. Joe will be out back getting tan and sweating as he puts up a new fence. Here in Texas, land of the Big Texas Sky, you only get a small swatch of land for a backyard and it is a silent requisite that all swatches of land be enclosed by a 6-8 foot fence so that you can pretend your swatch of land is really a vast prairie and you have no neighbors. Ours was falling down upon purchase of the home and we have not been lucky enough to have any of the storms from this spring finish taking it down for us. He rebeled against the prices quoted for having it professionally done and is doing a gorgeous job of creating one for us himself. We have planted peppers and tomatoes and he has a new grill that he is pretty thrilled with. We are in the midst of researching the best grass to plant. The house didn't come with grass. Just weeds that do an incredible simulation of greenness, but only from a reasonable distance. Up close its pretty scruffy right now. I would venture to say we are enjoying ourselves but I think Joe might laugh incredulously at that statement so I will simply say that I really enjoy watching him put up that fence. :D

Thursday, June 21, 2007

Faith and other mental wanderings

I have a lot of friends who are atheists. I have never proclaimed to be particularly strong in my faith and have most definitely never had an evangelical spirit. My mind and heart are full of questions...questions that once had answers in my younger years that I felt certain and sure of. I thought faith was supposed to grow stronger as you got to know yourself better, but it seems the better I know myself the less certain I am about things like religion, Jesus, God and the afterlife. I believe there is a God. I believe we go somewhere after all of this. I really really believe in angels. But I don't have the concrete visions or ideas that I used to.

I find as I struggle actively now against the massive changes life has brought that my lack of certainty and clear vision both cushions me and causes angst. I want to know where Joseph is. And yet I find...the more concise I get about letting him be in heaven in my perceptions, the harder my heart hurts every day with the certainty I will not see him again in this lifetime. Yet when I refuse to see him in heaven (and thus somehow feel I am still holding him here with me) I cannot deny he is NOT here with me and then I hurt from wondering where he is and worrying about him. I am coming to the conclusion that I have put a lot of effort into trying to hang on to him...and yet now as I try to make something of my life that will give dignity and bear witness to the knowledge gained through all of our suffering I recognize I will have no peace about his death until I let him have died.

When Dad passed, I knew right away he went on to a better place. I had a very clear visit from him in a dream and I have felt his presence near to me many times. And I yearn for those visions and feelings from Joseph. But I have to let him be in heaven to receive those blessings. And I don't want him to be in heaven. I want him to be here. It is a mental conundrum that I am hard pressed to turn right side up, to sit down in front of me and make myself face and accept. I think I am a pretty tough broad. I think I can see and face a great deal of hardship with a resolve of steel. But I melt before this, shaken to my core. He's gone. I dissolve any time someone says it aloud. Joseph. is gone.

Monday, June 18, 2007

I have been through enough holidays now since Joseph's death to know that it is probably going to be a long time until any of them are ever fun again. I am not a big Easter person but the holiday still hit me hard, preparing baskets for two of my ducklings instead of all three. Obviously Mother's Day was incredibly difficult and Joseph's birthday. But I didn't expect really to have so much trouble on Father's Day.

I knew it would be bad for Stewart. Not only the loss of Joseph, but Lynda, his girlfrend of about nine months at the time, died very suddenly on Father's Day just after Joseph was diagnosed. As the kids and I prepared to do things for him both to appreciate him and to distract, I anticipated giving him a strong presence to lean on. Not sure I did so good in that department. We took him to a movie of his choice and the four of us saw the new Silver Surfer movie (not a bad flick in terms of pure entertainment value). I got knocked on my ass by the previews before it though and for the rest of the day I carried a stone in my chest. The Transformers movie is coming out soon. Joseph had looked forward to that movie more than any since the last Star Wars film. He downloaded the teaser on it last fall, almost a full year from its expected release and talked about being out of the hospital and all of us seeing it together as a family. A stunning, breathtaking reminder of all the things he will never get to do. My heart just plain hurts that he will never seen this film. He wanted to so badly. I find myself dreading each holiday now as it comes. July 4th....he had just gotten out of the hospital from his first round of chemo two years ago and I found us a deserted patch of land close to the fireworks show but not near any people so that he could see them light up the sky and enjoy being out of doors. July 5th...Big Joe's birthday...and sadly, also the day routine blood work showed last year that Joseph had relapsed without warnings or symptoms. September 26th..my birthday. October 9th....the date of his transplant. Thanksgiving...the last holiday we got together. November 28th...the day he was readmitted. December 11th...the day he went to ICU and had to be intubated. December 23rd...the last time I communicated with my son. January 10th...the first anniversary of his death. I just see so little to look foward to. I am frightened of these dates and a few others. Focusing on my school work and building a life with Joe provides me with structure in a world that seems to have completely lost all sense of order.

My own Dad died three years ago in a sudden drowning accident and I thougt of him a lot yesterday. He would have died a horrible death from a Parkinsonian disorder that was stealing the stem of his brain a little at a time. The way he died was almost a relief compared to what he would have gone through, and I have had peace about his passing for a long time now. But I did think of him and hoped that he and Joseph are together somewhere. I hope everyone had a good Father's Day.

Saturday, June 16, 2007

This week I will have my first two exams since starting back to school. My biology exam is a take home, which makes me want to not worry about it, but if memory serves college level take home exams can be pretty tough. Taking algebra is like facing down one of my biggest demons from the past. I had convinced myself long ago of my hatred of math, to the point that I actually have been one math class away from having an associate's degree for years and have never gone to take it out of pure avoidance of something I don't think I am good at. How's that for ego? But it is a necessity now. Getting my nursing degree will require I take Statistics, and I can't take Statistics without taking Algebra first.

Joe and I were talking about planting flowers around the house today but it looks like more rain on the horizon. I'm not complaining. Guess that means the fence won't get worked on either, so maybe we'll be able to get the painting done that is left....entryway, kitchen and hallway. The entryway and hall are going to just be a nice, clean, somewhat generic beige with white trim, but I got a gorgeous butter yellow for the kitchen. The house is turning out even nicer than my imagination had envisioned when I chose it for purchase. I pretty much picked it out on my own since Joe was not here yet then and that fact made me pretty hypersensitive to any criticism of it. For a while there it felt like I was the only person on earth who liked this house. My nephew Jacob seemed to summarize it nicely for everyone when he walked into the empty living room, noticed the stains on the carpet and surmised "This is a YUCK house!" (he's four). I think he would like it better now. Its coming together nicely.

So I go to school on Friday nights until 10 PM and then on Saturdays from 9-2. Its only until August 8th, then there will be a break until the next semester starts. Joe is wonderful about helping me however he can and cheering me on. I came home last night to dinner waiting, the plugged kitchen sink taken care of (it had been a doozy), the kitchen clean and a particularly good bottle of wine open.

Thursday, June 14, 2007

First of Many

I turn on my computer and it is alive with pictures of Joseph that are so real that I can almost smell him. His shoes sit at the foot of my bed along with his other belongings. I had the courage to give his bike to his cousin this weekend...the first of many things I imagine I will be giving away. The horror that fills me when I look Joseph's death straight in the eye the same way I always tried to stare down his illness is so debilitating, I can only do it one small bit at a time. I know he is dead, because I was there when he died. He was failing and I have to keep reminding myself that he was going to die within a day or two, possibly within hours anyway...that by turning off the machine, we avoided having someone sitting on his chest cracking his ribs while they pushed him full of drugs and hormones with chaos all around and alarms going off. That would have terrified him. All of us. I forget that part a lot and often wonder why I gave up so easily. I forget too that he was on that respirator for four weeks before he died. And when I remember that, it seems he was gone a lot longer than he has been and my pain sinks just that tad bit deeper into my soul. The last I "heard" from Joseph was two days before Christmas. I believe now he was saying goodbye. I believe he wanted us to let him go. But I can still suffer waking nightmares of wondering whether he lay there, inert by neuromuscular drugs but alert because he'd become tolerant of all narcotics...the dose of Morphine to help ease him through the transition from life to death supposedly strong enough to stop his heart, yet it beat strong for a full three minutes after the machines went silent and all the world cascaded into that room, not like an explosion or a collapse, but the feathers of reality slowly drifting down upon us, their weight never to be lifted again. I'd never seen death in its natural state, only in coffins and embalmed neatness. I sang to him in a wavering voice a lullaby that came to me from his babyhood. I tried to assist him to the other side. His eyes started to open and his lips to turn blue, as if he were be asphixiated. I tried to have the courage to lay my hand on his chest and feel his heartbeat fade away, to maintain that skin to skin contact, to let him feel me there. Its beating became erratic yet remained frighteningly strong, his heart flopping in his chest like a fish tossed onto dry land. I could not hold that touch. It triggered panic, the desire to cancel that decision, to save him, to bring him back. I grasped the rails of his bed and sank to the floor...I watch it in my mind in slow motion as if from far above me... the low keening of my wail of despair haunting even to my own ears, then abrupt as I cut it off, jerked myself back into the moment, this moment, my last moments with my child... stood up, walked to the other side of his bed and stroked his hair, held the fine taper of his fingers, listened to the silence.... and watched my son die. Time went by. The doctor took a soft step forward. I knew why he'd moved...I did not look at him...gently I turned back the christmas plaid blanket Joseph still lay beneath, exposed the bruised skin of his chest for the stethoscope, looked at the grayness where light used to be across my baby's features and heard the soft whisper, sensed the forlorn nod..."there is no heartbeat"....and felt the strangled, cowardly urge to flee from that room and the image before me that did not, does not, will never compute. This boy, this man-child, this lively, energetic, baffling, confusing, infuriating, delightful, amazing, shimmering young man was dead...this grayish bluish tube-infested bruise covered diaper wearing famine victim looking body was just a few months prior my robust, healthy, optimistic, brilliant son. It felt violent. It felt wrenched from my grasp, a literal physical pain in my womb and my chest that I carry to this day even though that child was 13 years old and would turn 14 in just a few weeks from now. I never in a million years could conceptualize we might lose. I faced it. I stared it down every single day. I thought if I kept my eye on it, It... Death... could not sneak up on me and could make no move that I could not see, anticipate, utilize the experts at my fingertips and defeat with chin lifted triumph. To the very end, I stared Death in the face. And its image will haunt me forever, burned into my memory from staring at it for so very long. Even watching it come, I did not believe it would take him. I believed modern medicine could cure him. Even when I knew we would lose I somehow still expected God would save him. I'd made a deal after all. I told God at the outset of his relapse that I could live without him...that I would be okay if Joseph had to die...but that he had to do it quickly. That I could not stand to watch him suffer, to be helpless to his moans and cries, to his gasps and weeping, to his bleeding and indignities. I'll handle his death with dignity Lord, if you take him with dignity and merciful swiftness. I guess I asked too much. God said no. I saw things no mother should ever see, heard sounds from my child that would make the blood of the most emotionally cold person curdle in fear if not compassion. I did hard time. We all did. And some days now, I just wish all of it were done. Having to live the rest of my life trying to somehow figure out how to be okay sleeping in my own bed every night while Joseph lies in a coffin 30 miles away deep under ground...with these memories swimming through my mind...that which I refused to look away from now refusing to let me forget....its too heavy for a heart already tired. I'm not suicidal. But I'm okay if I die.