Sunday, March 30, 2008

Musings on an approaching death

I am listening to The Best of Conway Twitty. I admit it. Its Sunday. Dad used to blast this music on Sundays along with the likes of Johnny Cash and Merle Haggard and Willie Nelson and Elvis. Its part of my genetic make up at this point, and the urge to listen to this stuff on lazy Sundays is almost overwhelming. Dad is gone now, but when I hear this, I can still smell the aftershave he’d put on before church. This would all be rather idyllic if we had not had such a rocky relationship. But by the end of his life he and I had this wordless, unspoken bond between us, the kind of peace and serenity that comes in a relationship when two people have hurt one another very badly and have gone through all the stages and reached true forgiveness. I wish so many times I could see Dad again.

I got an email from my Aunt Joan yesterday. My Dad’s parents are still living, though in significantly declining heath, up in Nebraska, where we all ultimately hail from. Grandpa though, from the sounds of it, is reaching that place of crossing over sooner rather than later now. I have not seen my grandparents since my father’s funeral three years ago, a fact I can feel immediately guilty about until I remember all that has transpired since and the ludicrous impossibility it would have been to go visit while Joseph was sick, at least from a financial standpoint. But the idea of yet another casuality in my lineage of men has me funked and gray. I can imagine Joseph and Dad hovering near, and I am almost jealous. There are days when I wish with all the yearning in me to be with them again, and death’s sting is lost to me for myself. I recognize the need still in Nick and Alex to have their Mom around for as much of their lives as I can be. This is a deep and quiet secret. I don’t talk about it and I don’t nurture it. But it lingers, like a bit part on the side of the main stage.

Why must there be death? And why all this secrecy about it? And where does true inner peace come from? As I imagine my strong, gruff Grandpa lying sick and frail in bed, trying to imprint that mental image with the memories of his calloused farmer’s hands and sunburned cheeks, I seek an understanding that just will not come. He is old and his life was full. But the idea of another block of my foundation falling away leaves me cold and restless. This sensation of merely living until I die does not sit well with me. It feels like one endless, depressing, screaming, rapid, inevitable race to impact. Splat. We’re gone. Does anything I do between now and then really matter? I anticipate no real impact on society in any grand sense....I am not talented nor connected nor beautiful enough to gain any real acclaim...with the herald of the Internet exhibitionism of the type I type out here is as common as singers and songwriters. I have no connections or uncommon lineage or even any real drive to achieve a mark on history. I have never been a particularly patient person and with my artist’s heart am prone to fits of emotional extremity...I would rather just get there...I have no patience for the journey and with Joseph now gone the journey feels empty and meaningless. the prize is a long way off. I hated the car trip to get to vacation. I dislike plane rides, not for fear of flying, but for struggle to contain myself with a bunch of strangers and the wait it represents until we get to the good stuff. I hated being left behind as a youngster. I loathe this sense of wonderment for what comes next and the idea that others I want to be with are already there. Maybe I am missing all the fun. This life certainly isn’t always a good time, and lately harder than its been for a while. The news that Grandpa may soon leave us makes me tremble with emotions that are not thought to be particularly flattering. Envy. Fear. Sorrow. Yearning. The wish that I had endless time and resources, and of course, a desire for a better understanding, both of this process we call "dying" and of what I ought to be doing between now and then rather than living within this feeling of waiting for my turn. I have this list in my head of things I want to happen before I die, and I find myself driven toward trying to make them happen, a force that has proven nothing but destructive to my relationships and my sense of well being, as it is thoughtless, frantic and flailing, not intellectual, planned or implemented trust toward those who must help me make them come about...just a feeling that the sooner they get done, the sooner I can be done and the more peaceful I will be about the end......full of the stuff of passion without the temperence of intellect. I am working on being more peaceful, on regaining the sense of life and gratitude and good fortune that I had gotten so good at cultivating prior to Joseph’s passing. That feels more like me than this does, and I am counting on that sense of self to continue to nudge its way back into my heart. I reach for it, almost reluctantly at times. It feels wrong to try to live.

Friday, March 28, 2008

Nick has a school social tonight. He had a girlfriend at school, but apparently she told him she was breaking up with him because the "other kids" were making fun of her for being with him. His face when he told me this just broke my heart. When I asked him about it, he said "Well Mom, I'm not exactly one of the cool kids". Why are children so cruel to one another? I want to snatch the hair from that little girl's head and I want to give a serious ass chewing to the children who made her feel that way. If that is all the character she has I am sure it is better off that she not be with Nick, but watching him deal with this very personal pain is heart wrenching. Its worse watching your kids go through it than to go through it yourself. I just praised him for not compromising who he is in order to look "cool" and pointed out to him how well he is doing in school, how he has pulled up his grades, how proud of him I am. He's been through a lot and he is definitely socially awkward, but that will come with time. How many kids have been through all that he has? Not many. I hope he can see his family, the orchestra kids, the scouts and his youth group as his "pack" and realize there are people who love him and think well of him. I have told him these are nowhere near the best years of his life, but they do set him up for better grown up years and that we'll get through them together. I am gratified that at least he talks to me. But I wish I knew better how to help him relate more to his peers. He never asks to have anyone over, never asks to go to a movie with so and so or to the mall...he just seems content to stick near to home. I am not sure if that is just his own way or if it is the result of the emotional trauma of the last five years. And I don't know how hard to push him.

We got two new bradford pear trees planted in the back yard this week, and a new piece of art work arrived that we purchased on our cruise. Its our first selection of "real" art, signed and numbered by the artist. It brings so much life and energy into our living room and I am thrilled with it.

I miss Joseph so breathlessly. Some pictures of him just before transplant I look at and he seems so alive. I can hear him, smell him, still feel him on my fingertips. He would have turned 15 this Memorial Day. I would like to think of some way to commemorate his birthday this year. Last year it was just too much to think of. I miss him and cry for him a lot, but I do feel stronger, at least today. A little bit.

Monday, March 24, 2008

We had a wonderful Easter, better than I had thought about or hoped for. Easter is kind of a "nothing" holiday to me. I don't get into the bunnies and eggs and candy. Stewart does the boys' baskets now because we get to do Christmas here. And obviously I am not really a church-goer, and if I was, I would probably skip Easter Sunday in order to avoid the teaming masses of people who attend once or twice a year. So we had pretty modest plans of doing a ham and having Stewart and the boys come to dinner. Mom called and let me know she would come as well, and then yesterday morning Ryan (my younger brother) called and said he was coming by to visit for a while. The food was good, the conversation wonderful and the wine plentiful. I am so blessed.

Joe and I went to the cemetery to bring Joseph some flowers and also my dad. It was the first time I wanted him to come with me when I went. Its a gorgeous, dignified cemetery and we put a wind streamer and lovely yellow, orange and white flowers on his grave.

This morning I just feel a little drained. School starts back tomorrow; the boys go back today. I am incredibly depressed about my weight and yet feel beyond overwhelmed at the idea of trying to make watching what I eat a priority now. Something has got to give, and I wish it would be this sense of stagnation and lack of drive. There are so many things I want desperately for my life that just can't/won't happen if I don't get the weight off. My 38th birthday is in September and I don't want to be fat again for my birthday. Hot weather is coming and I want to be able to wear shorts and tank tops without feeling like a schlep in them. But instead of these thoughts making me feel determined, they just make me feel beaten down, old and weary. I have started, succeeded and stopped so many times since Joseph died. I know I have done it before, but I can't for the life of me remember how. I remember it having to take precidence over everything else, that I had to think so hard about it all the time, every minute of the day, to the point of obsession. How good I felt. How rewarding it was. But the degree of myself I had to invest in it was amazing and I have no idea where to find that right now.

So much on my mind these days. And in all, a lot of the time I just wish I could lay down and do nothing but remember Joseph until I am where he is. I know I can't do that. I have two other boys and I have Joe, Mom, a terrific job. I don't understand why I can't shake it better than I do sometimes.

Tuesday, March 18, 2008

Early registration for summer classes was yesterday. I have an edge in that my school registers based on how many hours you have already put in at their institution. Since I have been going to school there on and off since high school I am practically first in line and I get to register three days before the average student. It helps guarantee I get the classes I need at times that work around my work schedule. So I registered yesterday to take Anatomy and Physiology I. I admit I am tremendously intimidated by this class. Biology last summer was pretty hard. This is going to be even more detailed. I am talking myself down from high places every time I think about it. The class will be Mondays and Wednesdays from 6-11 PM. Ai-yi-yi. I am motivated and committed. I am motivated and committed. I am motivated and committed. Rinse and repeat.

We are getting into one of my favorite times of year. I love the violent weather that can come with the spring. Its probably wrong of me since it can be so destructive, but its such a passion, an intensity of nature. I love watching the storms roll in. I love the way the atmosphere seems to hold its breath and press inward on me as it approaches, the faint, low rumbles that herald the arrival. And they never last long enough to satisfy me. We were supposed to get bad weather today, but the storms are rolling up over the top of the cold front instead of hanging out in front of it on the warm side, so its going to just be rain and not the wind, lightening, hail and fury that I am so fascinated by. Its vaguely disappointing.

Spring break is this week so there is no Statistics to go to. It feels weird. I didn't do too hot on my last exam. I got a 78...not the lowest grade in the class by far, and apparently our class did much better than the other Stats class he teaches. But I am disappointed in that grade and will be working hard to protect my "A". He does replace the lowest test score with the final exam score if the final exam score is higher, so I just need to make sure that 78 is my lowest grade this term. I know exactly why I scored so low...I didn't study half of what wound up being on the exam. We had a day when class was canceled due to bad weather and I suspect the stuff I didn't study we were going to go over on that day.

Joe and I are getting busy with flocking the outside of our nest. We have our eye on two Bradford Pear trees for the back yard and we have already purchased five azalea bushes for back there, tomatoes for the garden and fresh basil plants. I can't wait for the basil to grow! I love being able to go out and clip off some leaves and toss it into things. We are planning to till up the soil and replant grass seed in hopes of getting things nice and lush. Joe started staining the fence this past weekend as well and that is looking good. I love going to the nursery and dreaming about all those plants. I saw a camilia plant this past weekend that took my breath away.

Time to get off to work...

Sunday, March 16, 2008

Your ageless, timeless face...I have no new pictures of you. You have not changed nor aged in over a year. These faded visions are all I have left of you. I can still close my eyes and capture the essence of your smell and the sound of your voice, but for how long? The fear of forgetting you comes to me sometimes, usually when I have been busy and not thinking about you a lot. You'll come back to me like a kitten peering around the corner and I will startle that I had not had you on my mind for a few hours. And then the fear swoops in. You will fade to the world, but I cannot let you fade to me.

I can sometimes be so tortured by your means of dying. It was so awful to me that the last six weeks of your life were spent in such helpless and steadily increasing illness. I had a vision this week, a couple of days ago. I was questioning my faith, as I always do now, feeling insecure and without footing. And I wondered...what if it is true? What if God or Jesus or the angels had come to me in the moments just prior to turning off the machines sustaining you and had put hands on my shoulders and with gentle compassion and infinite love had said to me "He needs to go with us now...there is nothing more you can do for him now. He will be completely healed and he will be whole. He will be without fear, without pain, without sickness or sorrow and he will not long for you. He will know he'll see you again and he will be content and so well cared for. But you will have to do without him for 40 to 50 years, maybe more. I can give him healing, but you then must sustain this injury of spirit for the rest of time as you can concieve it now."

I would have been so grateful. Grateful for an option that gave him healing and health, happiness and vitality back. I would have taken an injury over and over again that would have meant his recovery. This thought process comforts me. If God asked me to shoulder this sadness so that my child no longer has to suffer, then I can and I will. Every day that I feel it, if my head is just right, I can feel it as something allowing him to be well.

Monday, March 10, 2008

I spent the weekend at camp John Marc with a grief support group for families that we participate in. I'm not a big joiner, but this was probably good for me on some level. At least it felt good to talk about Joseph, to spend the weekend with other families who know what it is like to lose a child, to help them honor their child, to feel them help us honor ours. To be able to talk about it and nobody freezes or gives you the glazed over "there she goes again" look. To not have to edit or just plain ignore the fact that he was real, existed and is still a part of our family. That being said, it is absolutely draining. The memorial service we had was beautiful. We all got to write what we would most like the world to remember about the child we lost. I was very stressed about that, but I think I got it just right. There is an outdoor chapel there with a little brook flowing alongside it and they played soft music and read our memories as the family placed flowers in a wreath on a little altar. While they read about Joseph a bird started to sing very loudly in the trees around us, and the minute reading about him stopped, the bird stopped and did not start up again. It just felt good to cry for him, to not have to be forcing myself to muscle through those emotions without letting them show, to not be straining to get past them or to push them back down. Unfortunately though picking up my life after I get that upset is pretty hard for me, and I am not doing too good since I got back home. I found out I can't just waltz back into my life or my relationships too smoothly after that...everything is out of focus and gray, words don't make sense and my ability to intuit anything is just gone right now. It is horrifying to see how it affects the people around me when I allow the full truth of my grief to show even the smallest bit. I forget how badly people need for me to at least seem to be moving forward. And I am. But I do carry this with me and it is a lonely, lonely reality. I several times sat among the people at this camp and looked around at the other parents, thought about why we were all there and felt shock and disbelief that I fell into the qualifying category to attend this retreat. The counselors there that work with the siblings and then meet with the parents would qualify all the said about Nick and Alex with "But this is such a recent loss" or "Knowing that this is fairly fresh" surprised me and made me feel a little less crazy for the times that I don't feel like I am very on top of my game and for the times when I just want to curl fetal and weep but cannot. And its true...ours was among the newest of losses in that group of people. Most were six to seven years out from it. And those who were ten or more years out were the volunteers making the whole thing happen. We had deaths from cancer, heart disease, prematurity, SIDS, accidents, sepsis after surgery...the list goes on. Its a miracle that anyone ever grows up.

I have to take my statistics exam tomorrow. I feel completely unprepared and very unfocused. I guess I will try to regroup today and get back on my game.

Wednesday, March 5, 2008

Joseph is going to be on TV-55 in Long Island. They are featuring this video, in which he has a part, in hopes of drawing more attention to a little girl named Jackie. She has the same type of cancer Joseph did and has recently relapsed. She is in need of a transplant for any hope of a cure, but thus far she does not have a match.

If you are not registered to be a donor, please consider doing so. You could save a child's life.

Monday, March 3, 2008

An inch or two and still falling. Joe finally got a little snow...he made a snow angel on the top of the grill in celebration. I think he would not want to admit how quickly the blood thins when living down here. We have had fun running out the back door into the snow and then running back in when the cold begins to penetrate, squealing (on my part...Joe doesn't squeal) as the flakes tickle against skin. We lit the fireplace for what could very well be the last time this winter...we had spent yesterday buying azaleas for the back yard and enjoying 75 degree weather. Tonight its snowing.

I am....okay. I had a little melt down a couple of days after my last entry. I think I do work awfully hard to put my grief behind me and it tends to catch up with me. I get weary of it, ignore it, really do better for a while, then break down again. Its a cycle. To the point that even when its good, I know its going to rotate around and get back again. But the vice versa is true too. And I can say...the coil is getting smaller, the rotations less severe and less extreme. Still there. Still present. Always present. But microscopically, day by day, a little better than it was in the last rotation.