Monday, December 31, 2007

Goodbye 2007

Here we are, the end of 2007. My life looks nothing like it did in 2006, in some ways horribly different and in others dream-come-true different.
I have had a hard time coming in to write. Trying to get through this time of year without walking around under a dark cloud is a challenge and I work hard not to think about Joseph right now. I have so many things pulling my attention in so many directions, its not difficult. I have had a few pesky health issues of my own demanding attention and the boys are out of school, so that keeps us all busy. I had a breast biopsy done on Friday for an intraductal lesion on the right that is almost certainly benign, but still will have to be removed if it is what they think it is (a papilloma). It was sooooo anxiety producing, but I had it done at Cooper with doctors and staff I work with every day, and they were wonderful about making sure I felt no pain. Its pretty bruise up and ugly now, but at least it is over. As I lay there, heart pounding with fear and worry about whether the biopsy would hurt, all I could think of was how many times Joseph had to deal with that anxiety and many procedures he went through, how many times he wanted reassurance that something would not hurt and how many times I could not give that reassurance to him. It just really underlined for me how brave he was and how much more courageous than me. He never sweated and quaked like I did and went through soooo much more.
On my physical this year they found some weird neurological findings, so I am going to have to have an MRI of my head and neck to see if anything can be found to be causing it. Anacronyms like "MS" and "ALS" have been tossed around and I can make myself insane wondering if I am dying. The odds are so slim, yes, but we have hit such bizarre odds in the past, having two kids with two different kinds of cancer, with my dad having that weird rare Parkinsonian disorder, with my brothers both coming into heart disease so young. So its hard to put it out of my mind. I am feeling fine and hoping its just some weirdness inside me and nothing serious. I am not talking about any of this (breast or MRI) with my mother. She went nuts worrying about Ryan last week when he landed in the hospital with his heart problem. I don't want her under that kind of stress from me unless there is good cause. And thus far, near as I can tell, I am fine.
I don't have a lot to say right now about my grief. We are ten days from the day Joseph died, eight to nine from the time we realized he would never recover. I feel lightheaded and out-of-body when I remember it, so I am just trying for now to let it be.

Monday, December 24, 2007

Ohh I am trying so hard. So hard. My last post just kind of took me down, as if typing all of that out expended all the energy in me I had. I want so badly for this to be a nice Christmas for the boys, not one they remember as me crying all the time. But right now that is pretty much what I am doing. Crying. All the time. The guy on the Sunday Morning show played his piano at the end of the show and sang "Have Yourself a Merry Little Christmas" and it was so charming and without guile. I just sat there with the tears rolling hot down my face. Poor Joe. He is just being here for me. I know he has his own issues and sadness to think of and its his first Christmas living this far from his kids. I ought to be comforting HIM. But he has been incredible. He looks at me a lot, holds me a lot, his eyes a mask of compassion and anguished helplessness. He puts me to bed like a child when I need it and has been doing pretty much all the cooking and cleaning up after dinner. He holds me all the time.

I went to the cemetery yesterday. I purchased a big gaudy live hot pink poinsetta that has been decorated with sparkles. Joseph would have loved it. I got him a little blue bear with a blue and white Santa hat on, holding a soft blue star that said "peace" on it. Stewart had put up a Christmas decoration stake there already. I got Joseph a Christmas card with a puppy on it and wrote some things in it and left it tucked against his headstone behind the flower. He already had a pinwheel there already too and I used it to stake the bear down so the wind would not blow it away.

And then I just sat down and let it all come. I had been weeping on and off and contantly trying to stop it for days. So I just let loose, there in front of his grave. I have never sobbed like that in my life. I hated it, looking at the bear and the tacky but funny poinsetta and realizing these were the whole of my Christmas shopping for Joseph this year and my sitting here putting it on his grave was our Christmas together. It is just so wrong. Sometimes I honestly cannot figure out how it all came to this. My mind can glaze over the 18 months of horrifying illness and it can still feel so sudden.

Amy and Tracie wrote to me. They are the ICU nurses that took care of Joseph (and me). We became such good friends during that time and they were a big reason why I was able to keep my spirits so up. They also were the biggest reason why I decided to chase my dream of becoming a nurse. We just got along so well and they invested their hearts into Joseph and into me so deeply. I have had some contact with Amy and I have written a hundred letters to Tracie, who was there the day Joseph died. I just have so much trouble getting the words out and then having the courage to mail them. I love those girls so much and that they would be so touched by Joseph and remember this time last year so well as to write to me is so humbling and so warming. Tracie sent me the newst Jim Brickman holiday CD, as she and I had listened to it endlessly in Joseph's ICU room while he was so sick. Tracie was the last person on this earth that Joseph smiled at. He was groggy and barely conscious, but he drug his eyes open, saw her and lit up into this beautiful smile before closing his eyes again and going back to being mostly unconscious. It was as if he had seen an angel, and I am sure it looked to him like he did. Tracie is very beautiful and very gentle. But she walked around the rest of the afternoon with a smug smile on her face, knowing I had told her how much Joseph hated the nurses, but he chose to smile at her. And it was the last time he smiled in this lifetime. That alone makes me love her forever. There are so many reasons I love those girls forever. The brought me sodas when they got one for each other. They had been friends forever and made me feel like one of them. And they miss me and have written to me. Its time for me to write back and tell them. I want to find something of Joseph's to send to them.

Its going to be a tough day. I miss him so much. This hurts far worse than I could have anticipated and every moment going by brings me to tears. I am going to try...really, really enjoy this holiday. To find a peaceful way to think about Joseph. To savor where I am now and who is with me. To appreciate all my blessings. One of my blessings is gone. But I cannot let that hinder my recognition of all the others.
I love you Nick
I love you Alex
I love you Joe
I love you Mom
I love you Jeff, Stacey, Jacob, Matthew, Zachary
I love you Ryan
I love you Stewart
I miss and love you Dad
I miss and love you Joe-Gi

Saturday, December 22, 2007

It's almost here. If you ask Alex how long until Christmas the number of days just whips right off his tongue in a spurt of eagerness and matter-of-fact excitement. He is full of anticipation and its so fun to watch. We've been lighting the fireplace frequently, though the last few days the weather has been rather warm for this time of year, getting into the upper 60s and lower 70s, but its supposed to fall this afternoon and be below freezing by tonight. Its been a fun time and I am looking forward to both the time off work and the time with my loved ones. I am doing a bit better, remembering Joseph yet not dwelling on his death. I know after Christmas will be a let down and the music of life will turn to minor chords and dissonance as his anniversary approaches. I already hear the faint strains of it, but I am just letting it be what it will be and working on enjoying what is in front of me right now. It will get here and it will pass and I suspect bring with it a new shade of grief as the reality that he is not coming back solidifies that little bit more with the one year anniversary passing by. At the same time, I am finding myself "practicing", if you will, letting my mind contemplate being okay without feeling horrible guilt each time something happens that makes my heart swell with peace and happiness. Its hard. I have to consciously think about not feeling bad for feeling good, to remind myself its okay to be happy and give myself permission, and it always results in tears. I am actually crying a LOT these days, but not the heart wrenching, broken sobs of the darkest grief, but more healing tears of farewell. It is difficult to categorize the difference but its very palpable. One is just a mired endless blackness. The other is the recognition of light on the horizon and the realization that life is going to continue and Joseph will not be back, and that I am probably going to want to be happy again and to work toward that end. Its a sorrow that Joseph's life turned out as it did and that it is over, regret for his tragic fate, and yet in a sense a feeling of preparing to carry him with me, a kind of acceptance that was not there before. Yes, its the acceptance. The refusal to accept what has happened has not brought him back. I have worked very hard to keep it from sinking in until these last couple of weeks. I am practicing now accepting his death and it flavors the sadness a different way...still there, but allowing room to live within it. I don't think that sadness will ever go, but I like to think I can find a way to have it, hold it feel it and live with it inside me.....and still pursue my goals and dreams without the cloud of guilt and wrongness around me. I am saying goodbye. One year later, my heart is finally realizing that though I have hunkered down to wait this out, as I did so often through the worst days of his illness, the wait is not going to be lived out in this way. It is a bit like waiting for a door to open, and looking up and realizing the futility of that...that it is not a door, but in fact a wall. It can't move. It can't budge. I cannot wait for God to undo what has happened, for the nightmare to end or for Joseph to heal or the hospital to call wondering where I have been or to tell us there's been a mistake, nor even for the fantasy of the door opening and him walking in like some biblical raised-from-the-dead miracle to occur. I have to wait a different passage, one of space and time yet to be.

I have contemplated many times as my children grow and change and the nature of our parent/child relationship morphs with their different stages how sad it is that we grow up unable to remember how tenderly we were cared for when we were babies and difficult toddlers. How intensely we loved our parents and how intensely they loved us back. I have wished so many times through struggles with Nick and Joseph and starting now for Alex as they strive for independence that they cannot realize the depth of my love for them nor remember any of the beginning of "us", that as they fight me and think I don't understand or don't care that just the opposite is true. Except now, Joseph can. He can see the whole of his life, including those early years. He knows now and that makes me smile. We were so intensely bonded. He was such a wonderful baby and toddler. That bond does not leave us as our children grow. And now I know it does not leave us even if our children die before us.

I am excited about Christmas. Joe is too. I don't know what he got me but he did a LOT of shopping and is just giddy, looking forward to me opening my presents. I am a kid when it comes to presents. I love getting them and giving them both. It will be a fun time. Christmas Eve will be at Mom's and then Stewart will spend the night at our house so that we can have Christmas morning with the kids all of us together. Stewart would normally then take the kids on Christmas day to his parents' house but they are spending Christmas in Vegas this year, so Joe is going to be making a standing rib roast with garlic mashed potatoes and we'll all spend the day together here. I am going to do some baking today and just be getting ready for it all.

Sunday, December 16, 2007

All's well that ends well.

Its all over and that part of my psyche is breathing a big sigh of relief. I did not do well on my final exam at ALL. Embarassingly bad in fact. This is where my gratitude for doing all my homework, making great grades on that and getting my attendence grade comes in. I managed to squeak through still with a B in the course. Sadly, I thought I had come out with a C, which had me quite distraught. And by the fact that I could not even calculate my grade correctly, I would venture to say I don't particularly deserve the B. But I got it anyway and it makes me happy. Joe suggested last night we pick a day to take dinner to some of the caretakers up at the hospital where Joseph was and I am really looking forward to planning and executing that. Decent home cooked meals are in short supply when stuck there for extended periods. It will feel great to do that and be a wonderful way of honoring Joseph's role in this journey.

We've had a pretty cozy weekend here. Friday night Joe lit a fire for us and we all watched The Polar Express, which has become a bit of a holiday tradition for us. It makes me cry every single time. The music from it totally reminds me of last year and all we went through with Joseph. He loved that movie. A few days before he was put on the ventilator it was coming on TV at the hospital and we planned to watch it. It was right when he was starting to go dramatically downhill and sadly, he fell asleep before it started and stayed asleep and feverish through it. I have these bittersweet memories of laying on the slab they gave us for beds at the hospital in that dark room lit only by the TV set and his IV pump, listening to the music, hearing the message of the movie and tears sliding down my face as Joseph slept. It sounds like a horrible memory and in any one else's life it probably would be. But its my last memory of Joseph and I planning to do something together and it gave him a rush of happiness as we planned it out complete with having popcorn and cuddling under a blanket together. It didn't happen that way, but in our hearts, it did.

Watching the movie this year really brought Joseph to me. It felt like a whisper of wisdom, a breath of his spirit. I have struggled so much with faith in God and Christ since the last five years of tragedies hit my family, and it has definitely gotten in the way of me having any sense of peace about where Joseph is now. If there is no heaven, then Joseph is just gone, and I am really, really not okay with that. At the same time, putting my faith into a heaven that contains a God who let this happen feels like giving in to bullying to me and feels like somehow acquiescing to something that I fundamentally abhor. In other words, feels like I am letting God win. So I get my revenge by refusing to acknowledge my belief. But really, its my own self I am cutting off, from any sense of peace about my son. And in watching The Polar Express, whose whole message is to let yourself believe in the magic of Christmas, I kept hearing the same message stand out to me. You have everything you need...if you just believe. It makes sense in my head but sounds corny here. Josh Groban's "Believe" has become my new favorite holiday song. Its just infused with the strength, courage and childlike faith that was my Joseph.

My memories of last year are just so bittersweet. I had never had a Christmas that felt more full of the ever elusive Christmas spirit. I was so aware of my kids, my blessings. I knew inside me it was not going to end well. Part of me knew that Joseph would not be home for Christmas, would not be home at all. Yet there was this feeling of love and connection, not just with him but with all my family. It was as if heaven hovered so close, ready to sweep Joseph into its embrace, yet also bringing its goodness into my home, simply because my heart was open to it.

Today we are going to decorate Christmas cookies. Nick had a lock-in with the scouts last night and I need to leave in about 25 minutes to go pick him up. Its 27 degrees out. Ick. Hopefully he'll go right to bed and get in a good nap. We are going to make individual lasagnas and Mom is going to stop by.. I invited my brothers. Jeff declined due to wanting to watch the football game (which we will also have on but we'll be decorating cookies too). I was so dismayed at that. Its as if, sometimes, Joseph did not even die. Other than Mom I don't hear from my brothers at all. I recognize we were not close before he died. They hardly knew him. To expect support from that venue would be unreasonable of me. For whatever reason, we grew up emotionally cold and distant from each other. So I wanted to both bring comfort to myself by bringing my family together and having Jeff, Ryan, Mom, the kids all in one house reliving the tradition of our holiday cookies and also start bringing us back to one another. But as Joe says, its a bit like trying to turn a giant ship, one that may have already sailed. Our habit is to live close to one another but not have much to do with each other. And that makes me very sad. I am blessed that I have so many people who love me and I know its nota personal rejection. But its hard for me to understand, when everything in me is crying out to hurry, hurry, hurry while we are all still here. I filter the world so differently now. Everything feels temporary. Everything feels that at any minute, we could change.

Ryan wound up in the hospital last night with atrial fibrillation. He's fine, they kept him for observation and will get out today. Experience tells me getting out of the hospital is not as easy as it sounds, so I don't know if he will make it here today. I don't know what our family feels like we have been cursed. Autism. Brain Tumor. Weird Parkinsonian disorder. Leukemia. Weird heart problem. And now another heart problem. Nobody would ever believe we have always been healthy prior to five years ago.

I am looking forward to having the fire going and decorating cookies today. It should be a good day. The house will smell like lasagna. The Cowboys game will be on and the fireplace going. The boys and I will engage in a holiday tradition that spans over 37 years in our family and I will look around and feel how lucky I am. I like days like that. And the cool thing is, when my head is in the right place, I can get that feeling of being lucky just because I want to. I got a B in algebra, a personal demon of mine, and on January 14th the plan moves into another phase of achievement as I start Statistics. I have an enviable job and a life partner who adores me and two really cute, good kids with one precious boy watching over us all from heaven. I am grateful for all I have.

Wednesday, December 12, 2007

The term is almost over. Tomorrow morning I will take my final exam in Algebra and be done with school for a four week break. I am looking forward to that, though I admit I am really looking forward (oddly enough) to Statistics next term....the first class I am taking that will count toward my four pre-requisites that I must have in order to apply for the nursing program. I need a 78% or above to maintain the B average in my class on this final. I actually think I should be able to do that.. I hope so. This grade doesn't really count toward anything except getting me into Statistics, but the grade will affect my overall GPA, which could come into play if I am tied with another student for a place in the nursing program.

Alex and Nick are getting excited about Christmas. I can just sink into that...the smiles, the sense of wonder. We are going to do our annual cookie decorating this Sunday and Alex and I will be doing a gingerbread house together on Saturday night while Nick is at a lock-in with the Scouts. Alex takes growth hormone injections every day since he lost his pituitary gland to the tumor. For years he seems to have only grown small amounts. But lately, suddenly, his legs are longer and his face is maturing. The idea of him growing up and no longer being my little guy just breaks my heart, perhaps more than it would have before. Joe says I am just a walking exposed nerve right now and he is right. Everything tugs my heart. Everything brings the tears. The very thought of Nick and Alex growing, changing and becoming young adults fills me with pride and hope, but sorrow and loss as well. Am I destined now to turn into one of "those" mothers who cannot let go? I hope not. I would hate that about myself.

Sunday, December 9, 2007

When Joseph died, I watched and listened as Stewart, Nick and Alex all said "Goodbye" to him in their own individual ways. I remember marveling that they could say it. I was nowhere ready to say those words and made up my mind that I never would. And I never have actually bid him farewell.

I am coming to recognize now that I have tried desperately to hang onto the feeling of Joseph's death having just happened. Perhaps somewhere in my subconscious I feel that if it is recent, then he isn't actually that far away. That he was just here, and travel takes time. And if he was just here, then he cannot be far.

I am recognizing a different flavor to my mourning, a different feeling and depth to my sadness, and a kind of stretching toward peace that I was not able to even contemplate before. That is not to say I reach for a time when his memory will not bring sadness. I honestly don't think there is any chance that it won't. But I feel myself reaching toward the happier memories. I get angry inside a little even as I type that. I resist and resent any part of my soul trying to find peace with this. To find any kind of acceptance of it. It feel wrong with every fiber of my being, as if my pain has now become the embodiment of my child. But I am coming to see also that it gets in the way of me truly holding and communicating with him. When I am quieter inside I can smile about things. The memories come to the surface more freely than when I am anguishing. I don't think I am anywhere near where I will need to be to actually say those words, to say goodbye to Joseph. But I feel myself acknowledging that I am going to have to. The pain this causes is excruciating and gut wrenching, but the tears are so cleansing. I am not doing a good job at describing this. I am mourning Joseph so heavily now. It is a constant and it feels good. I don't know how else to say it. It does not feel good in the sense of getting a massage or laughing with friends or having a warm bath. It feels good in the sense of something being purged and let loose, something that needs to roam and find its place being let free to do so. I feel closer to him and I feel more honest. My son has died. I miss him. I mourn him. I am crying a lot these days and it does not take much to get me there.

I cry because I am acknowledging that I am glad he is no longer suffering. Even that feeling I fought. Of course I didn't want him to suffer. I just wanted him to not suffer yet still be alive. But his death does not change the relief of no longer watching in helpless agony as his body failed him bit by bit. I cry because if someone had handed him to me still warm from my body, squirming and pink and new and said to me "You can have him and love him for 13 years, but after that he has to go back to where he came from....or you can hand him back now and not go through that", I would have brought his small body to my cheek, kissed him and vowed to do the very best I could while I had him. I don't even know that I would change much in terms of how I mothered him. I just would do it more consciously, with a greater sense of savoring, and with more mental snapshots filed away to bring out later and remember him by. I would never wish away the 13 years I got with Joseph. Just as the pain of giving birth is worth it once that baby is in your arms, the pain of Joseph's absence is worth the years of his presence. But I do miss him so very much. I can still have trouble wrapping my head around the fact that he is no longer here.

He was a good son. He loved me fiercely, desired to please me, was protective of me and loved to be with me. Being alone in the house with Joseph was just a joy. He never needed a lot of attention. He really enjoyed just occupying the same dwelling. There was an energy of community off of him even when we were not speaking or interacting directly. He would bring out his Legos or play his video games or do origami and I would read or watch TV or cook...and it was peaceful. He didn't need to be entertained or validated. He just wanted to be nearby. And truthfully, I got a lot of that through his illness. I would get very frustrated because I knew my entreaties to try and get him to play or interact while he was sick would irritate him. He just wanted to be together, no different than always. Sometimes he wanted to interact, but most of the time he simply wanted to enjoy knowing we were there, bonded, together.

I wish I could find that same sense of community with him now. To feel that energy around me. When my father died, I knew right away he knew how I was feeling, that there was forgiveness and love between us and that our relationship was at peace and perfected now. I wish I could get that same kind of message from Joseph. But perhaps I just was more ready to let Dad go than I am Joseph. I am having so much trouble saying goodbye. I want to ask him to help me. Help me say goodbye Joseph. But I dont' really want to. I am afraid of saying that. I don't know what it will mean in terms of the rest of my life, of my relationship with him and my feelings about myself as a person and as a mother.

I ache to see him again. It is a hard, congested tightness around my heart. I ache to hear his voice. To feel the connection of mother to son. Am I still his mother now that he has moved on to a higher existance? Did he outgrow me when he outgrow his skin?

Thursday, December 6, 2007

I have to admit I am struggling in every way right now. The world is much darker this week than it has been for a very long time. I do not feel confident about my final exam in Algebra. I am trying to work on my attitude about that. I have my last chapter exam tonight (which I am also nervous about) and then a whole week to study for the final. I try to conjecture forward, to imagine how exciting next semester is, when I take my first class that will actually count toward applying for nursing school and the last class I need for my Associate's Degree, which I have put off finishing since my early 20s and now, with this new motivation, I will finally finish and have come May, just in time for Joseph's birthday. How if I stick with my plan and do well I will graduate from nursing school right when Joseph would have been graduating from high school. I openly, consciously fantasize about the envelope coming that will tell me I was accepted into the nursing program, what that will feel like, how Joe will hug me so so tight, how proud I will be, how fun it will be to tell Heather and my other girlfriends, how we will celebrate. It keeps me going. I read about childhood cancer and think about the difference I want to make, if not with children then with SOMEONE. I feel like the little engine chanting "I think I can, I think I can". I have a "B" in the class right now, but only by a squeak. I am terrified of bombing on both these tests and failing.

Joseph is everywhere for me now. These are the last days we had with him in any real sense of interaction. Today is one year since he ate his last meal. Isn't it odd I would rememer that? He had gone to the kitchen on his floor of the hospital and popped himself some popcorn. Stewart and I clung to that. He'd been happy when he did it. He ate as much of it as he could. We hoped it meant he was getting better. I do not fight what happened. His body just gave out and could do no more, and my faith is a little stronger now than it has been since his illness and death. Now its just the sadness of being without him. Both Nick and Alex are having such a hard time. Nick failed a class in school for the first time ever, and though I am not one of those parents who refuses to hold their child responsible for their school work and their actions, this really was a case where the school has erred grievously. We had a behavior and action plan in place to help manage Nick's grief and ADHD and apparently they decided they didn't have to follow that plan anymore, part of which was to notify us when Nick was starting to do poorly and miss things. We didn't find out until after the fact that he was struggling and I am so furious about that. Its just wrong to put a time limit on this kind of a loss. Alex is having trouble with a bully in the apartment complex making life miserable for him at school and on the bus. This child's mother has decided that Alex is a "sissy" and encourages her son to pick on him. I am just almost without breath when I combine these worries with grief and school. It seems unfair for life to keep throwing things at us when we have already suffered so much. It is unfathomable to me that a parent would encourage a child to act that way and not try to teach them right from wrong. I could not sleep last night from turning these things over in my head and I have been up since 2. Joe's son gets here tomorrow or tonight and I have done nothing to prepare for him coming. I'll do some things this morning but it feels piddly compared to all the effort I put into getting ready for Katie and I fear that is telling Joe I don't want Andrew here. I am thrilled Andrew is coming. I feel unbelievably guilty to be having such a hard time. Joe is patient, but I know its hard on him, watching my depression deepen, watching me doubt myself, keeping quiet about all the things at home I am not paying attention to, waiting for me to come back to myself again, wanting me to bring joy and excitement to our home and the holiday season. He's been so so supportive, doing dishes, keeping the boys while I go to school, hugging me, keeping a gentle voice and demeanor, letting things go that would normally grate on him. I am very lucky to have so much support.

I'll be glad to have all this testing over and a few weeks break, time to get through Joseph's anniversary before class starts again, time to process what this last year has been and to regroup and go forward.

Tuesday, December 4, 2007

The trees are up, the stockings are hung. I am really happy with how the decorating went this year. I had our annual Christmas tea on Sunday and it went exceptionally well. I have been tearful on and off since, just in gratitude for having such wonderful friends. Every woman needs girlfriends to balance out her life. I don't know where I'd be without them. The tree in the front window is Joseph's tree. I am happy we did that. I leave it lit 100% of the time.

I am stressed out and struggling, but finals are next week, so once I get through that hopefully everything will settle down and I can center myself some. I am doing okay, but now and then it comes upon me where we were this time last year. There is this sense of being inside a pressure cooker, with things getting tighter and tighter by my perception up through January 10th. I get knots in my stomach and feel ill. I go back and forth between having trouble eating and then eating wayyyyyy too much. I am afraid, though of what exactly I am not sure. I guess just having to face it has been a year since I have lost my son.
Andrew and his new wife are coming down to visit this weekend. The house is still clean from my party so I saved myself some angst on that front. Just pray I get through next week and that I pass. Then I can hopefully relax a little bit and enjoy Nick, Alex and Joe.