Wednesday, January 30, 2008

Can you ever laugh at your own grief? Everyone has some form or another. So I ask, does yours ever make you think or do things that inevitably, either in the moment or later on, cause you to look back and laugh inside? Sometimes its a cryptic laugh, one of bitterness and irony. Other times its sad and full of self pity. And sometimes its truly just seeing the ridiculousness that really in my mind just equates with being Sheri. The times I am standing in line at Wal-Mart and hear someone bitching about the length of the wait, and in my self absorbed and muddled mind, I am wanting to bite out to them "Yeah? Well just trying having your CHILD DIE!! How's that for pissed off?!" I can almost bust out laughing at myself about that right now. How out of context that would be.

Out of context. That is a good phrase for how I feel a lot of the time. As if my presence just does not make sense. It almost does not seem to matter where I am or what I am doing. I feel like a fake, a fraud, like I am pretending to be there. Pretending to work. Pretending to play. Pretending to shop. I don't know what I think I am honestly supposed to be doing. Obviously work still has to be done. Food still has to be bought. Shamefully or otherwise, I still crave entertainment and laughter and the presence of my friends. What is it about the loss of Joseph that triggers that gut deep feeling that everything from that moment forward now needs, in some kind of loyalty, to be framed with the reality both of his existence and his death? I didn't give him that much power when he was alive...and truth be told, selfish being that I have always been, it was not uncommon for me to feel somewhat resentful when the demands of motherhood encroached upon some of my other desires. And you know, it probably speaks a bit to my character, or lack thereof, that I can now feel that way...that nothing ought to exist without Joseph...but yet go forward with it anyway, whatever "it" may be...making love, going to dinner with friends, laughing with girlfriends, reading a book, taking a bath. That perhaps my guilt about such endeavors is somehow payment at the Altar of Joseph..that if I don't really enjoy it, or if I just feel really bad that I really enjoy it, somehow I have paid the price for that enjoyment. Maybe in time there will be a sale...a "buy one get one free", Two Guilts for the Price of One kind of thing. When I can go have fun at something and not feel as if it is somehow shameful. I can even feel shame for not wanting to feel ashamed. He's DEAD. He doesn't even get to LIVE. Its bad enough that I can possibly want to feel good for a while. But how I can ask the Universe or God or Whomever to also not feel BAD about feeling GOOD? If he could live through dying, surely I can live through feeling horrible for the rest of my life, yes?

Absurd on paper. Absolutely honest in my heart. I really do find myself feeling that way, having those mental conversations. Holding my pain up against the irks of the world and thrusting it forward as if I hold the trump card, so trump-ful that nobody ought to even TRY to be miserable around me. I'll tell you when you are miserable buddy!!

And then my dirty little secret. I am tired of feeling miserable. And yet I don't want to stop. Because I am awfully close to that place where instead of having Joseph, I have my misery..and that too can be babied and raised and turned into its own being and creature. And if I don't have that....I have only the empty place where he used to be, and my undeniable need to find acceptance for it being there. And putting aside the fact that I don't want the niggling reality that I also don't know how.

Wednesday, January 23, 2008

How many times now have I started composing in my head, keeping this long, heartfelt, eloquent dialogue going with all the same muster and motivation that causes me to sit down here and take on the satisfying clickity-clack of the keyboard as I pour it all out? Too many to count. But I seem to be caught in a hiccuping cycle. A whirlwind of nothingness. What do I have new to say?? It all seems to be blah blah blah blah blah.....ok ok ok ok ok I suck it sucks I hurt it hurts Oh wait ok ok ok ok ok ......over...and over...and over....Doesn't it get rather boring to read? I get disgusted when I go to write it. It all sounds the same, no matter how concise and pertinent it seemed in my mind mere moments ago. When it comes time to put the pedal to the medal, I got nothin'.

I do not know how it is possible, but I hurt now more than I quite possibly ever have since he died. Sharp, stabbing, debilitating waves of pain that come on suddenly and without warning. Before it seemed to have triggers...something he ate, something we did, some small part that triggers the memory of the greater whole...but now..its completely on its own. He is gone and I feel like an idiot that the realization of that can still...STILL...capture me with breathless and agonized surprise. I miss him now. Its almost as if the first year I was just learning how to know he was not coming back. Learning how to assimilate all that illness and suffering into my being and let it be contained there now that I am no longer living it...learning to put that away. And now in the new territory, I come into the missing him. His posture. His antics. The slight tension in his throat that made his voice sound stiff and too old for his body when he was trying hard to communicate something. His skinny arms hugging me. How his often silent demeanor contained within him a fantasy life and fantastical sense of creativity that was stunning when he let it come out. His slender hands. His tender heart. The way he wanted to learn to make chicken, but when I let him and taught him how to clean a whole chicken and then cut it into parts, he looked a little green and mused that he really might just be a vegetarian when he grew up....and he meant it. How we got lobster and made it at my mom's house because he wanted to try it, but how he could not eat it once he saw them crawling around and over one another in the kitchen sink at Mom's. I am breathless with missing him. It never, ever leaves me. Already he becomes a little fuzzy to Alex, who was 8 at the time Joseph died. And I realize, Alex will remember more being one of two sons than the youngest of three. And that just shatters my heart in my chest. I have all these pictures of Joseph and Nick, my little dynamic duo, my towhead and redhead...toddlers together, preschoolers together, a lifetime of challenges and joys ahead of me as they grew. I mourn that future. I mourn that past. I mourn both what was before...and what was supposed to have been.

I am funneling that as best I can into school...that sense of loss and need to find some kind of meaning in it. Statistics class is going well and I like both the class and the teacher. I am optimistic so far...I am doing well.

Monday, January 14, 2008

So it has passed now. The day itself was pretty hard. I took the day off work and then didn't know what to do with myself. Lots of aimless wandering of the house, trying to read etc. Jeff and Stacey sent me flowers and that was a nice distraction for a while. Both of my brothers sent me beautiful emails telling me they were thinking of me and of Joseph and that made me cry in a good way. Joe took me shopping for a dress for the cruise late in the day, and I actually was very grateful for something, anything, to get me looking forward. The actual hour of his death passed by without me realizing it and I was glad for that.

Since then I am dong okay I guess. I am struggling. I feel empty and raw. I am so tired and feel like I just want to go to bed and sleep a lot of the time. It feels like I was in a fight, just beaten head to toe, with achy muscles and fatigue and a sense of having come out the other side of something really horrible. I had some good time out with friends over the weekend and that helps. My Statistics class starts tomorow. I have to go buy the book today. I am glad the anniversary is over and now nothing looms except his birthday in May. That's a ways off yet and I am hoping I can re-center myself a bit. Joe and I have our cruise coming up. I have not had a vacation in a very long time and I am really looking forward to being in the sun, having time to read and just watching the ocean, maybe writing some.

Thank you for all your words of support, love and remembrance.

Wednesday, January 9, 2008

On this day last year I went to the hospital to see Joseph. I spent the morning with him, waiting to hear from the doctor, to see how things look, hoping for some change that would point us back in the right direction, so worried about the leak he had developed in the upper portion of his right lung that was filling his body cavity with air. I don't remember the doctor coming in nor remember exactly everything he said. He had a heavy accent and was very difficult to communicate with. His English was not very good, or at least not good enough to satisfy a worried parent who felt her son's well being was resting on a man she could not fully understand. But he mentioned having told Stewart it was time to consider DNR the day before. My heart started pounding so hard and I remember feeling this rush of horrible adrenaline and tension as I called Stewart to see if that was really true, to find out why he had not said anything about it. And typical of some doctors and not surprising given how hard this man was to understand, Stewart confirmed he had, but that it had been done in such a way it just sounded like a suggestion that was not very important, as if Joseph needed a new pair of slipper socks or maybe consider enrolling him in basketball when he gets well. It was not phrased in a way that made it clear he was in fact telling us Joseph was out of options and going to die.

I called somebody, I don't remember who, and arranged a care conference for the next morning with all of Joseph's wonderful specialists, the social worker, his oncologists, his infectious disease doctor, his critical care doctor....I don't remember who else. We wanted them all together, in the same room, telling us one at a time that there was no longer any hope of survival. That in their opinions, Joseph would never recover. I kicked then into high efficiency mode, shut off my emotions and went completely, horrifically numb. I called Joe and let him know that Joseph was most likely going to die the next day or the day after. I don't much remember that call. I called my mother and asked her to come to the apartment and help me clean, as I knew there was going to be a funeral and people would be coming. I met her back there, told her what was going on and we cleaned the apartment together and then went to the mall because I had gained weight through Joseph's illness and had nothing suitable to wear to bury my son in. I remember the macabre feeling of shopping for a dress, trying things on, finding nothing to fit or look decent and mentally berating myself over and over for becoming so fat that I am an embarassment to Joseph. I remember a horrifying moment when I found myself bitterly quiping to my mother that "after all, you only get to buy a dress to bury your son in once!", and thinking of the graduations and wedding and all his other milestones that would never now be reached. I found a dress that was inappropriately low cut but otherwise looked good and purchased it with the intention of getting a black simple camisole to cover the cleavage it exposed.

I don't remember how I slept the night before. I remember the surreal, numb feeling of looking out the hospital window at the end of the corridor as I waited for Stewart to arrive the next morning, how I went in and stroked Joseph's soft head and whispered into his ear that he was all done, that he was not going to have to do this any more, that he could be finished and free was all over and he had made me so proud of him, that he was so strong. He wasn't doing well that morning. His settings were very high. His blood oxygen was falling. It became apparent he was going to die on the respirator within a few days no matter what and suddenly that made it very important that we not let him, that we give him a peaceful passing in a planned out, calm way in which his father and I were there, that there was no panic, only peaceful surrender. I knew then once we made the decision to discontinue treatment we could not let him hang on another day. It would be that day, January 10th.

We had the meeting. Each doctor told us one at a time they believed we have done all we could do, that Joseph had fought a good fight and that they had loved being a part of his life. They were very kind. We were not given a deadline of when we had to discontinue the ventilator but were gently let know that he was failing and that he could actually pass on his own any time. We were encouraged to get Nick and Alex to the hospital so they could know what was going to happen and have an opportunity to say goodbye before Joseph died. Phone calls were made to our family to come as soon as they could. Stewart went and got the kids and brought them to the hospital for a meeting with the child life specialists, the social worker and us to let them know that Joseph was going to die today. I cannot write about the horror and pain of that meeting nor how they boys reacted. It will remain one of the most painful memories of my life. Nick wanted to go see Joseph alone; Alex wanted to stay close to us. Nick seemed more peaceful after his meeting with Joseph and I remain hopeful to this day that having the chance to say goodbye, even though Joseph could not regain consciousness or respond, did him some good.

Family arrived. One by one, couple by couple, our brothers, siblings, their husbands and wives, and Joseph's loving grandparents had the chance to see him and spend a little time with him alone. The afternoon stretched on. I was so restless, out of body, efficient, perhaps almost cold to the outside world. I just felt separate and floating three feet above it, as if I were watching my life rather than living it. In time, all were done, all was said. Mom wanted to have everyone go pray together holding hands or some such around Joseph's body with the priest while he passed and I resented that. I was having none of it. Only Stewart and I would be there. I could not fathom anyone, not even family, witnessing that moment other than his medical team, his father and I. We brought him into this world. We would cradle him out.

We went back to his room. Monitors were turned off, sedatives administered to our courageous son, Stewart and I positioned to touch and talk and hold and watch. The room went silent as the machines were turned off and at 4:58 PM on January 10th, 2007, Joseph Anthony Morrison, a light to all who knew him, returned to the God who created him.

I feel as out of body today, approaching this anniversary, as I did the days of his death.

I miss you baby boy. I am so sorry we could not heal you. I am so happy you are no longer suffering. I wish I could see you again. Your spirit is ever with me.

Monday, January 7, 2008

Cleared slate

Joe had a little minor surgical procedure this morning. I didn't realize how anxious I have been about the whole thing until I could not eat much yesterday and started having severe stomach pain again. It was a tender whimper of a shock when I came into the pre-op room and saw him in a hospital gown hooked up to an IV pole, and when I had to leave as they wheeled him away I felt suspended in air and time. Of course, he managed to bring me back to earth with a laugh, reaching his arm toward me as they wheeled him off and saying "What do I have to do to get you to marry me?!" Ah yes, maybe he should be on Versed more often? I laughingly told him "You have to ASK me!"

Then I went to the car and took myself out to IHOP for breakfast. It was hard to leave but goodness knows experience tells me sitting around biting my nails does nothing but ruin a decent manicure. I had a little cry on the way and then treated myself to all-you-can-eat pancakes, which I was rather vindicated to find that two pancakes are all I can eat, then rather peeved that I had been tricked into spending 50 cents more to have the option of trying to make them run out of pancakes. Its funny how being hungry can make us think that our stomachs will handle more capacity. Wouldn't that make the nightly news? "IHOP Runs Out of Pancakes....Class Action Lawsuit for False Advertising on Horizon". I thought of Joseph as I sat there pushing pancakes down my throat. He loved to go there. He would order scrambled eggs, bacon and silver dollar pancakes, then smoother the whole lot with strawberry syrup :gag:. And, I might add, eat it all. Enthusiastically. Like, the kind of little boy eating in which you just stare at your plate because if you watch you no longer want to eat anything, not just then, but ever again.

My breast biopsy and MRI both are negative, so it looks like all is well on the health front. Joe is doing remarkably well after his surgery and I am not sick. So the slate is wiped clean and I am free to grieve without any major catastrophes hovering on the horizon, something which I am oddly grateful for. Current worries get in the way of dealing with the past. I am taking the day off on Thursday. I don't know yet what I will do with myself. I seem to be spending a lot of time trying not to think about it. But today Joe and I have been very intimate in an emotional sense of the word, and we talked for at least a half hour about him, which is longer than I can usually do without winding up weeping and funky the rest of the day. He reminded me of the things I said in Joseph's eulogy and told me of his impressions of Joseph as a person, and I talked and talked and talked about memories of him from birth to death, so many they cascaded in on me like an avalanche..and it was good. It was peaceful. It was positive. It was happy. It felt wonderful to just talk about him.

So its a peaceful day in all. Joe is doing well, which makes me happier than I can say. I am trying not to hover and not to kiss him too much, but he isn't complaining. Its been a surprisingly close, intimate day.

Tuesday, January 1, 2008

Zuning out

Joe got me a Zune for Christmas. Easily one of the best gifts I have been blessed with in a long time. There is nothing like music to get into the soul, purifying the upper crust, getting to the cruxt of things, passing all the bullshit that gets in the way of honesty. Is there anything more important than honesty? The foundation of truth, the foundation of trust. Yet I have been dishonest.

I was home alone for a while yesterday, interestingly something that doesn't happen very often since Joe moved here. I have no complaints. Left to my own devices I tend toward vice and personal savagery. I am a lazy person at heart. Being with him has made me a better person, as I will do things with him in mind that I lack the will to suffer through for myself. I make the bed every day since he moved here, simply because he expects it. The dishes are done nightly because I don't want him to wake up to an icky smelly kitchen. I would be embarassed. I know he sees me as more than that. I have yet to decide if I am honestly more or if I just can't stand to be less. All I know is when I lived alone the bed was mussy until he came to visit and dishes were done when I ran out of clean dishes. We've been living together since May 5th of 2007, so if I am faking it I am doing it with bulldog tenacity. The truth is, I could not begin to hide from those blue eyes. I could not bear to be less of a person to him. He is so much of what I want to be.

When I found myself alone yesterday, I put away Christmas 2007 and made way for the new year with spaces of carpet that somehow needed to be vacuumed of pine needles despite the fact that the tree was fake. I focused on the task with a singularity that said it simply must go. It must be done. Wreath. Check. Ornaments. Check. Snowflakes. Check. Bye bye to the twinkle lights and anticipation and all the distractions the season brought to me. Bye bye to the memories for another year. I had no memory of doing this last year, though I know I had decorated my apartment to the nines. A yawning gap in the history of my life, black and lifeless. When did I put all that away? When did I stack Joseph's gifts in Joe's side of the closet? I tilt my head mentally as I look back. How can I lose that chunk of self? A universe of nothingness.

I then got out my DVD of A Lion In the House and put it in. I don't know why. Its the story of five families going through the journey of childhood cancer. Three of those kids didn't survive, and I saw this just before Joseph relapsed. I do not know how to explain why or how I am drawn back to that place, why I want to watch that DVD and relive it again. Joe worries for me. He struggles with why I would follow the stories of other ill children or why I would immerse myself into stories as sad and sadder than Joseph's. I watched carefully for his vehicle coming home. I felt relieved as the story started, the camera rolled through the hospital hallways and bald heads turned wise eyes to the lens, transforming themselves back into children with the swift flash of smiles and impishness. A world I know so well. We are drawn to what is familiar. The captive becomes grateful to the captor. I yearn to be back there. It affects my desire to be a nurse. It taints my sense of well being in my every day life. It is as if I have no country without crisis. I do not know what to do with myself. I watch with a hunger and homesickness that I knew was wrong and sad. People don't want to be there. That is not a good place to be. But the red line is for drawing blood out and the white is for pushing things in and this chaotic truth makes sense to me now in a way that the world cannot. If I do not look at them, who will? My greatest anguish in Joseph's illness was the willingness of the world to look away. I cannot do so. I wish to bathe in it. Somehow then not only am I less alone, but I make others less so as well. The worst has happened now. There is no greater pain to shoulder. Being firmly fixed now, I can show others that I too carry burden. We carry burden together. It is hard to explain and harder still to make sense to the outside world how this does, in fact, make me feel better, not worse. It is the personification of the human spirit. The death of our children is not defeat. Cancer could not steal away our love. Suffering is common to us all. Let us gather together then and shoulder not only our own but one another's. Then we are all carrying the load together. Many hands make for easier work. I am so very loved, so protected, so cherished that any idea of me suffering is unthinkable for those who desire to shelter me. But the fear now does not lie facing the pain. As my favorite song says, "Light does the darkness most fear". I guess I hope my attention to the unthinkable casts a sliver of light. Perhaps the time will come when I can turn to other things. I do not know. But just now, it validates me.

My gaze is wary on the nearing anniversary of Joseph's death. I am frightened. Even the most generous of souls feel a year is about long enough to be grieving. Most give you far less. Joan Didion calls it the Year of Magical Thinking. The first year after the death. The year you hope to undo it. My year is up. I have imagined my life up until this point but not beyond. I don't know what comes next. What will it be like when he is dead longer than he was alive? What will it be like next November when Nick turns 14 and is older than Joseph was able to survive? When his pictures become noticably older? Jeff,my older brother, was my hero, a compass for me...he did it all first. What is it like for Nick having his compass disappear and suddenly he must forage forward without that small indication of what to expect, the map laid out by the older sibling going first? How can I help my boys heal when I have no idea what we are supposed to be doing? I fall back continually on the old triteness that as long as they know I love them, they will be okay. I want to believe it more than I believe it.

I cleaned out the closet today. I had to find my birth certificate as we are going on a cruise and they won't let me on the boat without it. I fingered through lives that are slowly starting to blend by the combination of names on papers and intermingling of things. I want to get married. I want to stay forever. I want to feel like every possible wall against change has been erected that can be. I touched Joe's things, pushed my nose into some and drew inward. I find it far too easy to imagine wandering the mud colored walls of our bedroom alone, to imagine the debilitation that would come if suddenly he were no longer here. I fear desperately the humanity of those I love. I have recognized the temporary state of all of our bodies. How cruel that now another 40 years feels like too little. I can rage against the powers that be that caused me to be born too late to be the one to bear his children and raise a family together, can feel robbed that we lived so long without one another. I can rob myself of the here and now in regret for all that was not there before. He asked me to find his birth certificate for him today and in my search I found the report cards from his youth. The admonitions of his teachers made me giggle with delight. I have never seen a picture of him as a boy, but I yearn to. So impractical, the desire for things that never could have been, that would not have been right even had they been there. Perhaps somewhere the loneliness of my youthful years was tempered by the knowledge that one day I would have this. How ironic that God would bless the most difficult years of my life with the happiest of loves.