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 worry....how 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 try...to 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 did...it 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.

Wednesday, November 28, 2007

Today is it. It was day +50 and Joseph spiked a fever. We spent the day in the clinic and they decided to admit him for IV fluids. We thought he just wasn't drinking enough. I actually scolded him. And I was mad because I knew I was going to likely miss a trip to Florida that I had planned to meet up with some friends. He never came home again. I actually had a good day yesterday and wasn't thinking about this particularly anniversary. Its like my body knows. I woke up feeling off and emotional. I looked at the date, had a suspicion, looked at my journal on Joseph's caringbridge page and exhaled. A year ago today God started easing him out of our arms.

My heart is so heavy. Life looks so different now. He's been gone so long and yet it feels like yesterday. I wish so much things had turned out differently. I was wrapping presents last night for Christmas and discovered tubes of wrap that I had stubbornly bought last year in my determination to be positive, get through Christmas and hopefully bring Joseph back home. I don't think I can use those rolls again. It hurts just to see the patterns on the paper.

I did hear something on the radio yesterday that I turned over in my head all day and that turned my eyes toward hope. The morning radio show I listen to was talking about ghosts and haunted houses and people were calling in to tell their stories. It was mindless, interesting listening, until this one lady called in. She stated she didn't believe her house was haunted, but did believe she gets visits from time to time from her daughter, who died 9 years ago at the age of 4. She woke up one morning crying because her head hurt so badly. After what I can only imagine was hysteria at the escalating pain and franticly trying to decide what to do, the little girl opened her eyes, looked across the room and pointed, stating "Heaven! Oh Mommy, Heaven! Its so BEAUTIFUL!"...and then closed her eyes and a few minutes later breathed her last. So sudden and so sad. She had an aneurysm.

I hope it was like that for Joseph. Beautiful. Peaceful. Wonderful. Full of puppies and other kids, particularly the little ones he was so good at entertaining, and a sweet girl to pal around with like he was beginning to yearn for toward the end. Nick turns 13 on Thursday and is now about my height. I wonder how tall Joseph would now be. He will be forever 13 in my mind's eye.

Today, then December 11th, the day he went to ICU and was put on the respirator, then December 23rd, the last day we had any conscious, deliberate communication from him. And then January 10th will come, and it will be a full year since he flew beyond where I can see.

I don't feel desolate about Christmas nor without hope for the future. But I am inexorably sad and old inside. I miss him.

Thursday, November 22, 2007

I Give Thanks

To my Joe-Gi - Thank you for the memories you gave us of your last Thanksgiving with us. I have sweet, warm memories of you wanting to help cook and me trying to find some things for you to do that would not be an infectious risk to your brand new baby immune system. You were so diligent and sincere as you stirred butter into the green beans and seasoned them for us and as you melted butter in the microwave and used the basting brush to coat the rolls. You wanted a turkey leg on your plate and you got one, about a half pound of meat there I suspect, and you took maybe two bites, but I recall the look of peace, pleasure and satisfaction on your face as you looked around at your family. I don't remember what we laughed about, but I remember the sound of our laughter with you, your dad, your brothers, Joe and me. Thank you for giving me such warm, happy memories of you. I will do my best today to remember the happiness of when you were here more than thinking of the sadness that you aren't anymore. Your time here with me was a gift from God and I will be thankful for that time.

To Stewart - Thank you for being a wonderful father to our sons and for being a strong, worthy partner as we navigated both Alexander's illness and Joseph's and now the fallout in our family from our loss. Not many people can get through a divorce as well as we have, and I recognize you have worked hard to make that possible. I am grateful for your efforts to keep us all a family despite the differences that caused us to part. I am thankful for the memories you have given me that are filled with the sounds of laughter from our children, particularly from Joseph at times when I am sure he didn't feel much like laughing until you brightened his day. And thank you for the times you have made me laugh too. I am grateful that you are such a wonderful parent to our sons, co-parent to me and a friend to Joe and I. You are one of a kind and I will always pray for your happiness.

To Nick - Thank you for being such a sweet and tender soul. You are stronger than you realize and so smart it stuns me at times. You are always there with a hug or a hand to hold and you are always ready for family time, ready to share laughter and intellectual conversation. You are just starting to figure yourself out and watching you grow has been a blessing to my life. I am proud of the man you are becoming, proud of how you face your shortcomings, proud of how you do not give up despite the struggle life and school are at times and proud that you are such a pleasant young man who makes others feel good about themselves, who honestly wants to do right in the world. You amaze me with your attention to current events, politics, the world, the arts and your life. You are a gift from God to me and I love you.

To Alex - Thank you for the laughter you bring to me. Your wry sense of humor and ability to add depth to the humor of every day life is such a blessing to me. I love the way that you so openly love me, how you will hug me spontaneously and how you always want me to play games with you, to share in your achievements and the things that you find fun in life. You always are ready to help out without complaining and you show so much self motivation for such a young man. The fact that you had a brain tumor so young and have turned out to be so courageous and driven makes me so proud of you. I am thankful for your life, your love for me and your presence here every day. You too are a gift to me from God and I love you.

To my Joe - I do not know how to begin to categorize how thankful for you I am. It is just too massive to define. You saw me through the darkest years of my life and because of your love, your encouragement and your boot to my ass on many occasions, I am doing better than I would have ever given myself credit for being capable of. You make me better than I would be without you and you make me think better of myself. Thank you for the laughter you bring to me every day, for the security you have given me financially, emotionally and spiritually, the passion you fuel between us and the tender love you protect and care for me with. Thank you for letting me take care of you, for sharing your foibles, your self percieved failings (I never see them the way you do), your worries, your dreams and your goals and thank you for letting me run beside you as we strive to make life as good as it can be. Thank you for providing us with this home and for making it a place I want to be more than anywhere else on earth, for working on it so diligently even when it isn't fun. I am grateful for the way you make me feel like the most beautiful and sexy woman on earth, for your playful side that makes us both feel young again and for the way you work so hard with me when we are irritated, frustrated or perturbed with one another to bring us back together again. Thank you for forgiving me for being difficult to live with at times and thank you for being so patient with my grief, which I know is unpredictable and painful for you to witness. I am so grateful God brought you into my life and I want to live the rest of my life with you. I will take care of you all of my days.

To Mom - Thank you for raising me, caring for me, developing so much of my character. Thank you for reading to me so much. It is an activity that gives me so much pleasure even today. You make me feel good about myself, particularly when you want my advice on decorating or choosing your clothing. I am proud of the woman you have become, particularly since Dad died and I admire the way you attack your personal demons and work so hard on being a good person. Your laughter always makes me laugh, your smile is burned in my memory and the time we get together is precious to me. You are never afraid to say you are sorry and you are always willing to forgive me when I tip off the deep end for a while. You loved me when I was not very lovable and didn't hold it against me as I grew out of the worst of it. You are supportive and kind, fun to be with and understanding. I have a wonderful friend in you and I don't know what I would do without you. I never want to know.

To Nessa, Amy, Tahiya and Felicia - You are some of the best friends a girl could ask for. You give me perspective when I am wiggy, tell me I am lovely when I don't like myself very much and laugh with me when I am a weirdo. You listen when I need to talk, love me when I am grieving and share your lives with me in a way that makes me feel like I still have something worthwhile to give. I cherish your friendship and am so grateful for your presence in my life.

To Heather - You have stayed so close to my heart all through this horrible time. It is true that you find support where you do not expect it when life deals its hardest blows and this is particularly true in you. You have been a faithful fan of my life, a nonjudgemental support in my grief and a wonderful sounding board as I adjust to no longer being single. You share your own challenges and relationships with me and make me feel like I still have valuable insights to give. You have been one of my most avid supporters as I strive to get into nursing school and give me such wonderful, realistic ideas of just what I am seeking to get myself into. Your spirit is so giving, so honest, so strong and so real. I don't see you nearly as often as I would like to and am grateful when our lives settle enough to let us get together. I am so thankful to have had your friendship. You bring things to my life that nobody else does.

To my Phenomenal Women Online Imaginary Friends - You also are a source of support that I would not have expected and on whom I lean a great deal. You are proof that the Internet is not solely the source of evil that so many think it is. Though many of us have not ever met face to face, I have had years now of correspondance, shared accomplishments and shared challenges. You have sent gifts, money, support, meals, cards, encouragement, insight, perspective and prayers throughout Joseph's illness and passing and I will never forget those of you I looked up and saw at Joseph's memorial and funeral both. Your place in my heart is so deep. You amaze me both individually and as a group and I feel humbled to be part of such an amazing group of women who tell me all the time they think the world of me.

To Mary Ann - Thank you for opening your heart to me and to Joseph. I am humbled as well that someone as accomplished, educated and amazing as you would seem to think so highly of me. You are special to my heart, not only for what you have done for me and for Joseph but for all the wonderful, funny, sweet memories that Joe shares with me of your growing up years together. I am grateful for you and hope life brings us all together soon.

To the men in the armed forces who protect and sustain our country, thank you. I could not do what you do and it makes me doubly grateful that YOU do what you do.

Tuesday, November 20, 2007

I have not had time to think today, barely time to breathe it seems, and now that life is quieting down the heaviness of this day is settling in on me, the sadness pressing onto my chest and making my stomach hurt. I don't know what to do with it or where to put it or how to be. Settling down into bed with his blanket, the first urge in my bones, will not break the spell of sorrow and feels useless and pointless. It is as if my spirit paces within the question of "why", prowling for some answer that will bring peace to me. Oh God, its been a year since we brought him home, a year in the next few days, through to the 28th, that we had our last "good" days with Joseph in terms of his being at home, being coherent, still very sick but able to try so hard to be well. Where do I put this? I have no pocket, no pouch, no purse, no emotional holding for all the ways it spills over. I don't know what i need or want. One minute I just want to be alone, the next I want to be held. One moment I want to cry, the next I am impatient with that urge and sick of it. One minute my mind and heart demand to know why, the next I am shrunken with the realization once more of how pointless that question is.

I had my physical today. I believe the Cooper patients go home more fatigued at the end of their day in our clinic than I do at the end of my day of work. It started with blood work, progressed through a baseline bone density, my mammogram, spot compression views to check an abnormality, consultation with the breast radiologist, then back upstairs for body composition, hearing testing, photographys of my vocal cords, vision screening, then on to the dermatologist for a head to toe skin cancer screening. After this, upstairs again to meet with the dietician and go over my three day food journal, then back to the doctor to talk about past medical history and current complaints, then basic physical exam, pelvic and pap smear, then dressed and across the hall for a resting EKG and treadmill stress test. After that, enough time for a brief snack before heading downstairs for a full body MDCT HealthScreen to check for coronary calcification, thyroid and abdominal tumors of any kind and other abnormalities and a CT scan of my head because I get headaches. Then back upstairs to meet with the doctor again, go over all the results, get all the recommendations, discuss all the concerns and issues at hand. All of this took over eight hours, from 7 AM to 3:45 PM. But I had all my results today and all my health testing done at once by the same people, who talk to one another and spend as much time as I need with me. So I found out I have a kidney stone, a dilated milk duct, a heart murmur that was not there before (a benign "flow murmur"). I have symptoms of potentially growing an ulcer and abnormal reflexes in my left foot that needs a neurology evaluation if after good hydration and some stress reducing measures (because it can be caused by anxiety) it is still there in two weeks. I have been assigned diet, exercise, yoga classes for stress reduction and attempts to wean myself off Excedrin for my headaches. My vitamin D is critically low and I am not getting enough calcium but to date my bone density is still normal. So I need Vitamin D supplements to the tune of 1000 mg per day. But the body can only absorb 500 mg at a time, so it will have to be twice a day, not just once. Oy vey. I suddenly feel very old, for a girl who has never had any worse health problem than being overweight. I didn't do too hot on my stress treadmill but that is no surprise. What IS a surprise is that the dietician wants me to eat more, not less, to lose weight.

So all of this of course left my brain and body pretty weary, after being squished, prodded, stuck, scanned, palpated, pulsed, sampled and screened. I feel like crawling out of my skin, laying it aside and just slipping into wonderful nothingness of a warm bath and time to be with my thoughts, to wash away all the hands and eyes that surveyed me today and passed judgement upon me, even if just medical judgement. Obviously it is time to make some changes, and I think I am ready to do that. But right now, I just want to be quiet, still, cared for and soothed. Joseph is dead. Today I see the toll his illness took on my own health and its time to get serious about remedying the damage done. I think psychologically what I hate right now more than anything is the feeling that I have no idea where we would be right now if Joseph had survived. All my life I have had this silent map in my head of the general course my kids lives will take...and its become so deviated. I can no longer dream for my oldest son. I can only remember. My head is weary and I have no idea what I need. I grieve. It is a weight. I would swear I could hold it in my hands. I want to be kept company but yet I want to be alone. I remember my Joe-Gi. I honor his memory. I miss him. I love him. Still and always.
A year ago today we got to bring Joseph home from the hospital after his transplant. I almost don't know what to write about that. I almost don't know what to say. I am so grateful for the time we got with him, so glad we got one last Thanksgiving together, and I am so sad that it was the beginning of the end.

Sometimes I am really appalled at what people will say. It doesn't happen often and I know that even when someone is seriously chewing on their foot they do mean well. But I had a good friend yesterday tell me that she dreamed of Joseph and actually believes she communicated with him..and that he died so that the rest of us could be "a happy family again". um....what?! Not only just plain a horrible dream, but what on earth would possess anyone to think that would be a message of hope, joy or comfort? As if we don't have enough guilt about his passing, now someone thinks he became another Christ and sacrificed himself to "save" the rest of us. I am incredulous.

I have my first Cooper Clinic physical today. I am not looking forward to it, to say the least, but it needs to be done. It will be interesting to learn how things work there and what the process is. Basically I will get everything done today and results back today. I hate it that one can't wear an underwire or deoderant and I really really dread the idea of the exercise stress test. As if one cannot tell by looking at me that I am in terrible shape.

We are looking forward to Thanksgiving. My Aunt June and Uncle Ed are coming down to visit, so that will be fun, and I am hoping to get a lot of my Christmas shopping done. My Christmas Tea is on December 2nd, so things will be in high gear here soon. I have an Algebra test on December 6th and the class ends on the 18th. Time does go awfully fast.

Saturday, November 17, 2007

Nick and I had a pretty terrific time this afternoon. He had indicated an interest a few weeks back when he heard that the Moscow Ballet was coming to perform The Nutcracker. I was pretty enthused to hear he'd like to go, so needless to say, we went. It was his first ballet and the first I have attended in probably 10 or more years. I was not too sure how he'd do...I thought it might get boring for him. It was held at The Majestic, which alone seemed to impress him tremendously with its chandalier and restorations. We had excellent seats in the second row of the third balcony and he was rapt the entire time. I do have to say, he was also, near as I could tell, the only pubescent boy in attendance other than a couple of the dancers themselves. His awestruck, very impressed "That was AWESOME!!!" as we gave our final ovation says it all. I have a culture buddy in my middle son. We had a great time together. Of course, he went to put on his dress clothes and discovered between now and the last time he wore it his arms and legs have grown three inches and everything was too short. He wore them anyway because we really didn't have anything else appropriate, but he needs both a haircut and some new dress clothes. He looked very handsome anyway and spent a lot of the time during the ballet with his head on my shoulder, ogling a little ballerina dressed all in white with a tiny harp she was carrying around. He said that she turned his heart to mush. Oh my.

As for me, I spent much of the time wondering what it would feel like to jump around like they do and have absolutely nothing on one's body jiggle, wiggle, reverberate or crease. They were just lovely, every single motion the epitome of grace, skill and athleticism. Nick pointed out that all the men seemed to have a wedgie, to which I silently replied "Yes, and we ladies all are thankful!" They were absolute performers, entertainers, and when one considers they hear this same music over and over, twice a day every day for about 8 weeks, one can't help but be impresed. They bought a lot of energy to the performance. It was wonderful.

Tuesday, November 13, 2007

I am having so much trouble writing. It feels a bit like at the very beginning, when there were so many emotions under the surface and so many changes flying around me that I just could not put my thoughts together coherently and the idea of cataloguing them was actually unattractive and a little frightening. But I am thinking about Joseph all the time.

We are headed toward Christmas and it is everywhere now. I am feeling strangely different than I thought I would. Yes, it is tremendously painful. But all those reminders have been ghosts around my head all year long...Joseph's ultimate end was fairly steeped in the Christmas season. So all these reminders are actually making me feeling much closer to him. There is a part of me sinking down into that like a warm, soothing bath. I can think about him all the time now. The sights and sounds bring him to me constantly, and it is almost as if all these things are giving him back to me. Its painful but it is wonderful too. Forevermore Joseph will be so present in Christmas for me. A whole new meaning to a very special holiday that has always been my favorite. I miss him so much. I get to thinking about him and the thoughts just tumble and jumble over and around one another, at times raging out of control in my head. I can find so much to feel guilty about. All the times he wanted to do something and I said no, not because what he wanted to do was truly dangerous but because of things that I feared could happen. All the times I secretly silently fantasized about the day not only he but all my children would be grown and gone and my life completely mine again, because I am a selfish being and was very unprepared for the sacrifices children bring. I don't have that thought anymore. If anything now I feel like my flailing hands are grasping at the air and smoke children leave behind as they zoom toward adulthood....too late now....too late now....like a solemn, mournful bell tolling in my head. And the one who will never get there. Who has disappeared completely, never to age past 13, never to grow up....at a time when it was just getting good, our talks, his thoughts, the wonder of listening to his independent ideas and the generosity of his desires for people on earth. I should have been more like him. I still should be. How I wish I knew if he knows how much I love and miss him..how much I have always loved him. Sometimes my desire to join him is so very strong, and I find myself yearning for some sudden event to carry me away and end the mystery once and for all. Where is he? HOW is he? I can actually get a physical ache in my upper inner arms where his thin shoulders would come into contact with me at the first exchange of warmth in our embrace. I can type here all the usual platitudes of how no parent should ever have to bury their child. It is true, but it does happen and more often than I ever realized until I joined those invisible ranks.

So I go through my days..carrying him with me everywhere, stealing every moment I can to slide off into daydreams and thoughts of him. I wish at times for hours in which I can just be with him in my mind, alone, no speech, no touch, nothing to disturb my memories and musings, which were silent for months after he passed and now which bombard me the second I open tha tdoor. What will happen when the one year anniversary of his death hits? Its almost here....what will happen when that day looms up bright and sunny and completely opposite of the cold, dark days that followed his death this past January?

I don't feel unhealthy and I don't feel like I am stuck in a quagmire of darkness. I feel sad beyond the measure of my own bones and skin, yet at the same time deeply aware of others around me whose loss would also bring me to my knees. I am in this in between place, anticipating our first Christmas in our first house together, looking forward to enjoying my boys while they are still young enough to enjoy me back and yet registering with every fiber of my being that there was another and that there still should be. I almost feel sorry for the families that will go through this holiday not even realizing the holes in their lives that are currently filled, but could be so devastatingly emptied in one strange twist of fate. If there is one thing I am grateful for during that time that Joseph suffered and that time just prior to his death. I have never in my life been so aware of my depth of love for someone. I am glad to know it is there. It is not gone. I feel it every day, in every lonely moment without him. I have loved greatly. No different from any other parent except perhaps in my awareness of the depth of it and the abiding nature of it. I loved him enough to let him go. It almost doesn't matter that I had no choice.

Friday, November 9, 2007

I am not blogging too often these days. Things have gotten very busy between school, work, kiddos and home. I was writing in my mind earlier tonight, but now I am just plain tired. Too tired to say very much. We had a lovely evening at home tonight. Joe made us chicken on the grill and Alex and I sliced up potatoes, onions, peppers and tomatoes from the garden to make little grill packets. It was a nice, simple meal. Somehow we wound up talking about gift giving and meaningful gifts, etc. One of his favorite memories is of his sister, Mary Ann, who made him whatever kind of cookies he wanted every two months for a year. He remembers how she'd send him a huge batch and how fun it was for him to call her up and say "I'd like some oatmeal cookies" or chocolate chip or rice krispie treats. I love family memories and holiday stories.

We are doing well. The 3rd marked six months since Joe moved to Texas and in with me. It felt like a milestone. I think if this was going to be a blatant disaster we would know by now, but we are both very happy and content. I am planning a Christmas get-together with my girlfriends that we do every year, only this time it is going to be in our home. That will be fun. Joe's given me a generous budget and I am having fun making plans. Some people have Christmas lights up already and one of the radio stations is playing Christmas music as of the 7th. I find both disgusting. It absolutely ruins the season to see that stuff before Thanksgiving.

More this weekend.

Monday, November 5, 2007

The wind is blowing and the house is creaking and moaning. A cold front is moving in. The kind of night that makes you want to know exactly where the children are. Nick and Alex are with their Dad. Joseph is not here. Not anymore. He lays in a scout uniform 30 miles away and 6 feet underground. He resides with God. Is there wind in heaven? Is there anything to creak and moan in contrast to the warm tranquility within a secure dwelling? Does it get chilly enough to light a fireplace? And if not, would anyone want to be there? All is perfect in heaven...being cold is a kind of suffering. And we do not crave suffering, but the remedy of it. And its remedy is the stuff of gratitude. And gratitude is the stuff of happiness. A circular conundrum. I would not want him to be in an eerily winded place in which the temperature were dropping and walls making noise around him. Not without me. Not without his mother. It is a kind of ego I suppose. A child needs his mother to feel truly safe. I fear he can't feel truly safe in heaven. Again, a lack of faith that claims me so easily. I shall never be a soul worth emulating. I am too full of doubt and fear. I see a paternal God in my mind sometimes shaking his head silently, not in denial but more in dismissal for all I cannot know or understand. A child asking why the sky is blue and who thought up the color green.

I talked to two old friends tonight, both who have known me for over 10 years and both who know me very well. It was strange to hear them interact with me, as if I were the same old Sheri. It was like watching myself through a looking glass or a tunnel of some sort. I could see myself as they see me in those moments, this whole person with whom they have a history. And yet I could feel myself in my body, so disjointed and disconnected, talking individually to two people whom I love very much and looking at the conjoined history with no sense of ownership. It all gets broken down into before and after. Before Joseph got sick. After Joseph died. I wanted to cling to them, this lifeline of a girl who used to have so much laughter and passion for life. I am still her I am sure. But at times she feels so foreign and separate, like a happy suit I put on to mask the small, uncertain, frightened Sheri inside. Talking with them made me realize I do have a whole history, much of which did not involve Joseph at all. I existed before him. I have to learn to exist after.

I had belly dance tonight.. our instructor video taped us last week and then showed us the result today with her critique. Um. Ew. I looked just terrible. I have been doing well with eating right but seeing that tonight was even more motivating.

Sunday, November 4, 2007





Its been a fairly nice weekend. Joe is sticking close to me and watching over me protectively and tenderly, and that helps. Lots of physical affection, spontaneous hugs, long moments of being held. It is wonderful and soothing. I did a lot of cooking over the weekend, which I like to do in the fall. We had homemade pizza on Saturday night with the crust and the sauce from scratch. We have been growing our own basil and that really made a difference. It was insanely good. Joe smoked a couple of pork shoulders today and I made some dinner rolls from scratch that were pretty much a bust, but sure did make the house smell good. I got all the Halloween decorations taken down and Joe and I had our talk about Christmas budgeting. All is well on that front.

Saturday morning Cooper was having a 5 K fun run, so the four of us went out for that. We got free Tshirts. I really expected Alex to love it and Nick to grumble and moan through it. It was a pretty cold morning for North Texas (about 47 degrees) and Alex was the one complaining and Nick really stepped it up. We all got in a good 5 K walk and it was so much fun. Nick wants to do more of those and it was good family time, so I think we will. My poor body is wondering what on earth got into me...I am still sore today. But I made decent time on the walk and had no trouble finishing it. Cooper had a fund raiser for the new kids exercise initiative and the top ten employees in terms of bringing in $$ were put into a drawing for a brand new Honda Fit Sport. I didn't even try to raise money but after seeing that very nice, fully loaded car given away to another employee I think I will put some effort into it next time. They do such incredible things for the employees at Cooper. They had another little contest earlier in the week and I won a $20 gift card to Chili's. I really am grateful for my job and my family.

Saturday, November 3, 2007

This has been one of the more difficult weeks that I have had for a while now. Halloween without Joseph was lonely and sad. Yesterday was All Soul's Day and my church always does a memorial for the families of our parish who have lost a loved one since the last All Soul's Day. We all bring a picture to put on the altar...this is my third All Soul's Day memorial mass. First it was grandpa. Then it was Dad. I never could have imagined it being Joseph though. Seeing his smiling face up there among the others who have passed away, there in the church that I have avoided since his funeral....I cried more at that memorial last night than I did during his funeral services. I felt so bewildered and stunned...stunned that this thing that only happens to other people has happened to me. To us. Ten months. Its been just short of ten months since I have seen my Joe-Gi. Eleven since I have heard his voice. I miss him with a hollow desolation...disbelief that I will never see him again washing over me, particularly in the evenings when I am very tired, but with me through the day to some extent as well. Big Joe has been so patient. I was really doing better for a time and it has to be confusing and painful to watch me struggling again now that we are headed toward the holidays. He wants to talk about our Christmas budget this weekend and start getting things in order for gift buying and the like. I feel sick when I start trying to remember how much I usually spend on the kids and to work out the numbers. Simply multiplying by two instead of three is like some loud, heavy door slamming in my head. Grief is so selfish, so self absorbed. If I believe what I was told growing up and what I heard at church last night, Joseph is in a place that has been prepared for him, past the point of suffering and pain, capable of loving on a level that I cannot even conceptualize yet. I can start to feel very bad about myself for my current lack of faith and for the fact that even if I really do believe all those things (I think I do..but that overwhelming feeling of yes! There is a God and I KNOW it! is gone because even if there is I don't like Him very much right now) that I would rather have Joseph here with me....as I said. Selfish. I can take comfort in the fact that he is in that mythical "better place" but the flip side of that coin is that he is not here. He's dead. And goodness knows I have never been very good at waiting.

I do ponder a lot over the book A Grief Observed by C.S. Lewis. I pick it up often and read blurbs from it. He captured so much of the essence of grief over the death of his much loved wife from cancer. He makes a good point, that none of us really know that we have faith or that we are believers until something happens that makes us utilize that faith or belief. That everyone can crow to the heavens over Jesus and heaven, but that a loss like this kicks the platform out from underneath us. His own faith faltered for a time. Maybe I will find mine again too. But I cannot hear God right now over the wailing of my own broken heart.

A woman took Joseph's picture from my hands as I went to the altar to collect it to take it back home. She was a little bit of an oddity, soft spoken but smiling brilliantly and the first person to approach me in such a forward fashion to ask me about my son. I think she followed me up there. She must have seen me weeping through the service. She asked how old he was when he died and what his name was. And then she told me, not in a judgemental way or a scolding fashion, but more as if she were marveling at something beautiful "He is rejoicing..Oh he is rejoicing now!" I think in another time and place I would have hated her for that, thinking of all Joseph suffered and feeling as if she had neatly swept all of that away with one blithe statement, that it would have seemed to be more about comforting herself than about any real attempt to impart comfort to me. But this didn't feel that way. My spirit went quiet inside and all I could manage was a meek "I hope so". I would like that faith again, that certainty. It would be comforting to know where Joseph is and when, in a vague sense, that I will see him again.

So please keep us in your prayers. The hardest time both just in terms of the seasons and holidays but also in terms of anniversaries of Joseph's journey are coming up swiftly. Its like watching a hurricane approach.

Friday, October 26, 2007





Things are going well, at least from my perspective. Jeff, Katie's boyfriend, is taking a nap and Katie is out back with her dad, so I am trying to give them some time to themselves and stay in the background for a while. I get fascinated watching them together. My father and I were not close. He was a distant dictator whom I feared, and so seeing her snuggle up with him even though she is in her early 20s, hearing her telling stories about when she was growing up..it chokes up in my throat. I admit I feel envious. I feel like I ought to watch them and miss my own dad. Instead I watch them and imagine what it could have been. She is a very lucky girl. I also search her face a lot..she looks so much like him in so many ways. Her face is delicate and lovely, with an exotic slant to her eyes that is truly unique and an adorable way of using her mouth when she speaks that is completely unconscious and charmingly engaging. I am fascinated by her. We have had a couple of moments together, not many, but I think things are going well. I hope they are going well. I like her sense of humor and her matter of fact approach to life. I have no idea what she thinks of me.

We went to the 6th Floor Museum today, located in the book repository from which President Kennedy is alleged to have been shot by Lee Harvey Oswald. It was interesting, watching the movies from that time period. It was almost disturbing..the fashions from that time were close enough to some from now that I could relate as if it were happening now. One portion was a movie that showed his funeral and they played Taps. I thought of the boy scout bugler that played Taps at Joseph's funeral. A lady there was crying openly as she watched and everyone was pretty solemn and I felt tears tug at my own eyes..my mother loved JFK and it makes me think of her as a young woman, made me realize that I can still be moved to tears by a man who died seven years before my birth, that life is so swiftly over. What am I doing to make this world a better place?

Thursday, October 25, 2007

I am sitting here waiting for a phone call from Joe. He is driving back toward home from the airport, where he has picked up Katie and her boyfriend, Jeff and we are all going to meet at Luna de Noche for dinner once he gets close to our area of town again. I have been going insane cleaning and decorating, putting a fresh flower arrangement in Katie's room, clean crisp sheets on every bed, candles lit, a new welcome mat out front and a muscle in the back of my neck that is killing me from my nerves and tension. I have been a whirlwind of activity, effort and nerves, as if Katie will walk in here, look around and say "You know Sheri, I wasn't too sure about you, but dang, that peppermint hand wash in the bathroom is NICE! Welcome to the family!" I swear they could make a sitcom about my thought process.

As I have been cleaning and doing laundry that seems to reproduce faster than rabbits, I was musing on the volatile joy that it is being the mother of boys. I find it highly ironic that I can find fresh, clean, STILL FOLDED clothing in their laundry hamper....but one pair of underwear. Someone explain that to me....they are more than willing to wash things that are still clean, but get them to change their underwear.....??

Yeah. So.

There's the phone and my stomach has heaved and turned. I think its a margarita kind of night. I pray we all have a good weekend together. I pray she likes me. I pray Joe behaves around her new boyfriend. Y'all can pray for me too.

Wednesday, October 24, 2007














Its been a little while since I updated and I apologize for that. Life is busy and finding time to sit down and write has been challenging. The party went well on Saturday night. Now we are in high gear getting ready for Katie and her significant other to arrive tomorrow evening. This will be the first time I have had any opportunity to spend any kind of time with her and I am both excited and nervous. I hope she has a good time while she is here and gets some good time with her daddy. I know he is excited to see her again.

While Joe and I had a halloween party over the weekend, Nick and Alex had Cuboree, a scouting camp. The pictures show what a good time they had. The camp was just across the highway from the DFW National Cemetery where Joseph is buried, so they stopped to see him while they were there. Nick got pretty emotional. Alex spent a lot of the time straightening up the flowers and decorations on other people's graves in the area where Joseph is buried. I sent a Halloween stake out there with Stewart a couple of weeks ago. The national cemeteries are actually pretty strict about the decorations they allow on the graves, so any time we leave something we are prepared that it probably won't be there when we return. But the groundskeepers have simply been moving Joseph's Halloween decorations out of the way to mow and then replacing them, which touches my heart. I miss him so much this time of year. I want so badly to get excited about the holidays and I hope some part of me finds a way to enjoy them this year, for Nick and Alexander's sake if nothing else. But every time I start to get excited about it I feel an immediate stab of pain. Though Joseph was on the respirator and was not home or even conscious for Christmas last year, we still had hope up to and slightly through that point. We had shopped for him and had presents for him and believed he would improve, get off the machine and have a great time opening all those gifts. This year there will be no Joseph to shop for and it struck me today that forevermore I will have just two kids at Christmas time instead of three. I cannot describe the wrongness and the pain of that realization. Yeah, its been there all along and I have known it all along, but suddenly as the time to start shopping is upon us, the reality of it feels very different. Knowing and experiencing are two different things. At the same time, it makes me only more determined to have a great holiday with Nick and Alex and fuels the hope that Joe's kids will some day be able to have Christmas with us too.

Thanksgiving will be a challenge as well. It is the last holiday we got with Joseph. I can see in hindsight that he was not feeling well that day, but he was so happy to have gotten to come home. He wanted to help cook and he wanted a turkey leg on his plate. He got both, ate little, smiled a lot. They are lovely, bittersweet memories that I will always cherish.

The weather has turned more chilly. Though it brings back the memories very powerfully, it startled me how much it also brought back the feeling of Joseph being with me. I hope that for the rest of my life the chill of fall, winter and early spring will be Joseph's spirit with me.

Thursday, October 18, 2007

Things are moving along at a rapid clip this week. I have an algebra exam tonight that I am feeling pretty trepidatious about. I do great on my homework and then have been choking on the quiz and pre-test. I know all my formulas and rules. I just get in too big of a hurry I think. I frankly find Algebra to be incredibly boring and cannot fathom when or why I would ever need it, which makes me impatient to get just it over with. I need to slow down and double check my work. It is stunning how many times I get an answer wrong from an error in basic math or forgetting to put in a negative sign. *sigh*

Yesterday was an awfully exciting day at work. I got up early so that I could get there right at 6:00 AM. That way I get off at 2:20, which rocks so hard. But when I got there yesterday, the alarm in the building was going off. Now, several people have set it off on accident, so unfortunately my tiny brain just didn't comprehend this could be trouble. When I get into the stairwell of the employee entrance, the door has been broken into and there is blood smeared all over the place. Like an idiot, I am thinking about pretty much everything under the planet but the fact that there has obviously been a break-in..there were two other vehicles in the parking garage near the door, so frankly I assumed that there was already other employees inside the building. So I went in. Stupid stupid! I get as far as the central waiting area, where it becomes apparent that the new flat screen television has been stolen rather hastily...the wall is torn up, the mounting aparatus shattered and the veneer on the wall pulled away along with lots of blood smears. I call the police, start sweating like mad because suddenly it dawns on me that they could still be in the building, and I hightail it out of there back the way I came. Obviously I am fine, but it shook me up. Later they found blood on the balcony door and mused that they probably were still in the building when I came in and then snuck out behind me when they could not get off the balcony. Gah. Stupid me. I just don't think like a criminal. It didn't occur to me until it would have been too late that I was in danger.

Joe and I are attending a halloween party at some friends' house on Saturday night. They have one every year and its always a lot of fun. I am going as a school girl (got my ruffled socks and everything) and Joe is going as his own version of Jimmy Buffet. Nick and Alex are going camping this coming weekend and the weekend following Joe's daughter is coming down to visit us for a few days. Life is full and that is a good thing. I suspect it won't slow down until after the holidays. We are going on a cruise in early spring for five days and I am thrilled to have that to look forward to beyond all the anniversaries and memories that have to be maneuvered between now and then.

Monday, October 15, 2007

The ups and downs continue. I feel so helpless to them and baffled by them. How I can now be having a perfectly beautiful day and yet in the time it takes to make a quick drive to the store and back I can think Joseph's name and tears start to fall...yet the feeling of it being a beautiful day not at all change inside me, and then I just put it away when I get home and go back to whatever I was doing. Its a lonely feeling, but appropriate. The intensity with which I am starting to miss him grows under my skin and heart and into my limbs, so much a part of me now that I cannot separate it out even from good and bad moods, happy and sad days. It is just always residing in me, something I can touch, palpate, breath in tandem with. I yearn and ache. And yet I am happier in a general sense than I have been in a long time. I have to wonder if it is merely a matter of what I pay attention to...the pain or the goodness. If I walk around constantly conscious of Joseph's absence and my loss of him I quickly get debilitated. But I am no longer at the point that I have to just pretend it has gone away for a while for me to do okay now. I can carry it with me and feel it and still be having a pretty good day. I do think it affects me somewhat still. I find myself frequently saying things all wrong or transposing words when I try to communicate sometimes, particularly when I am tired or stressed. It has its place and takes up space.

Work is going well. School has not been enough of a priority to me and I need to buckle down and make sure I am not neglecting that. It is nice not having it be so focal but striking the balance between not focal yet not forgotten can be a challenge for me. I don't think it would be good for me to be a full time student and yet trying to work at this time. Hopefully that will come together as I grow closer, in a year or two, to applying for nursing school.

Joe has booked us for a five day cruise to Mexico in early February and I am looking forward that, just after all these anniversaries to come. I hope that will give me something else to focus on and look forward toward.

Nick and Alex are doing great and are looking forward to Halloween in their new neighborhood.

Tuesday, October 9, 2007

I have kept so busy today that I have hardly had time to think about anything to do with Joseph other than what I posted here this morning. Work was busy and the day passed quickly. I went to the gym after work (yay me) and then dropped off a movie we had rented over the weekend on the way home, then slipped into Fashion Bug just to see what they have in terms of work appropriate clothes. I came home, put some sausage on to fry and gathered up the ingredients for pumpkin sausage soup (which Joe would not touch because it has pumpkin in it), talked with Joe for a bit when he got home, went out with him and picked a few tomatoes, swept the front porch, cleaned up the living room a bit, made beef stroganoff for Joe for dinner from leftover roast. We ate together, watched some boring show about the planet Jupiter and now here I am...whirling into a sudden wall of memories that has quietly waited for me all day to come and stand before it and give it its due.

I went back and read my journal entry from last year. Was it really this day that the air mattress collapsed from beneath me while I slept? That incident is one of the pillars of our transplant experience for me...one of those weird twists of humor that would show up now and then. For a while it seemed like all humor disappeared from my life. It is coming back now, a little at a time. But it seems both so long ago....I feel like a different person completely since then..and yet the idea that an entire year has gone by just fractures my heart in a way I have not felt yet to date. The march of time away from Joseph is devastating. I still remember so clearly how exhausted I was that night...how sick Joseph was...how worried we all were...how determined. How can it be a year when it is still this vivid? It honest to God seems like I should be able to get into my car right this minute, drive down to the hospital and slip through those swinging doors, go into Joseph's room with the crime scene tape on the door and gather him into my arms and sob out my relief until he is annoyed with me.



They showed on the news today a woman whose son has been in Iraq. She was at church or something and not expecting him home for another month, but somehow he surprised her and arrived while she was at church...and the whole thing was, of course, filmed. I found myself so incredibly jealous. So bitter. I want that moment too. All the religious people will insert here that I will get it in heaven. That is too long of a wait. The woman in the story said "nothing tests your faith like waiting for your son to come home". My muttered replies were scathing and inappropriate, full of envy and anger and completely unwilling to acknowledge that there is any suffering on earth that surpasses or equals my own...after all...she at least had some hope he would come back. I suppose that is the way with all people. Joe is fond of saying "Every person's problem is their biggest problem". That is probably true. Things tend to grow to fill the space available. That is likely the case with emotional struggles as well. Everyone has their load to carry and some are so heavy it is impossible to appreciate the heaviness of someone else's. Of course, my problem now is being so resentful and scarred by the load we had to carry then. I am not carrying that particular load anymore...but I still remember well its weight on my shoulders. I have a different weight now...one so permanent that in my better, healthier moments I realize I cannot even weigh it up against anyone else's burden. It is its own unique entity. In my even smarter moments it comes to me...who would want to win that contest anyway...to be declared the one to have shouldered the greatest hardship? What idiot would want to win that particular war??

And so I remember him, my Joe-Gi...and I cry..and I miss him...and I mourn all we hoped would be that is not. His wacky sense of humor. The way he would laugh so hard that no sound would come out for a while, only to then suck inward with a great woosh of air and burst into the room, drawing anyone nearby in with it until all would be laughing whether they knew why they were or not. The Garfield comics did this to him a lot. America's Funniest Home Videos. Silly animals and the antics of babies. His Dad.

I wish I could apologize to him for putting him through the transplant. It brought him nothing but four months of misery. And he trusted us to heal him. And we failed. I wish I could hug him just one more time and say goodbye with some sense of understanding between us, with some air of knowing I have prepared him well for this journey and prepared myself to cope with his absence. How I wish I knew where he is right now, whether he is the same, whether he is grown up now, whether anything would be changed. Is he angry at me? Is he whole and well now? Does he forgive us? Does he miss us too much?

I want the satisfaction of having packed extra socks and underwear and admonitions to be careful and watch for cosmic debris and to stay close to his guide..and not to forget to visit sometimes, to brush his teeth and don't go flying too close around Grandpa when he is trying to work on the golden gates or he might just get Grandpa kicked out of heaven when the distraction makes him cuss. To give him a picture of us, one of the ones we took together in San Antonio, and to review my favorite memories with him and to assure him that I will always be his mommy and I will take good care of his brothers and to be right there waiting for me when I come down the path, because I will be afraid and anxious to see him. To tell him he is the best son a mother could ask for. That I am proud of him. That I love him. That I love him so much.

So much that I wish. So many regrets. So lonely without him.
Its been hard the last few days on so many levels for Stewart and I both. He went to the cemetery this weekend and put halloween decorations on his grave. Just typing that out makes me stop breathing with fury and sorrow. On his GRAVE. I cannot describe the depth of feeling that brings to me. The convoluted and conflicting emotions. The memories of his suffering through the ATG, the horror that day was and how I could not imagine anything worse...until he began to go downhill, until the day we had to decide to disconnect his oscillator and accept that Joseph was gone...to watch him leave. So much suffering. I wish so much things had turned out differently.

On this day last year Joseph recieved his bone marrow transplant, umbilical cord blood banked by a family whose child was born four years ago. I thank that family for the hope their donation gave to us and wish that hope had come to fruition.

People are starting to talk about the holidays already. I want to put my hands over my ears. I know we will purchase whatever we would have for Joseph and donate it to Child Life at Medical City. And it will hurt.

Saturday, October 6, 2007

I have started dreaming of Joseph more and more lately. The night before last I dreamed I was in this vast, rolling green meadow/foothills kind of area. I was walking, searching..I kept coming upon children in groups of three...all very happy, playing together. I would ask them where Joseph was and they would continually point me onward with smiles, over the next hill and the next where I would meet yet another group of children, but never finding Joseph.... but ever the feeling that I had just missed him, that he was just over the next hill, that these children, who were happy and robust, were just with him, just playing with him.. It was a pleasant dream if a bit exhausting. Last night's though was truly disturbing. I dreamed that Joseph was still in the hospital..that we were mistaken, that he had not died, and that he had been waiting waiting waiting for us all this time. As morning broke and I came to greater consciousness I was soooo confused and full of angst and pain. Was he dead? Was there some horrible mistake? I didn't know what to hope for. I kept seeing his little face as it was in the dream, so ill, so sad, so lonely and so accepting that we just weren't coming back fora long time, so that when I finally realized it and showed up again he didn't even see me there at first. The haunted, hollow feeling of guilt and failure has clung to me throughout the day and then the deep, abiding sadness that I really did watch him die, that he isn't really down at the hospital, that my poor brain just cannot wrap around it sometimes, even now.

Friday, October 5, 2007

Most years right about this time I start to get really anxious for the cooler weather to kick in, but not this year. I am finding I dread it. It began snowing the day after Joseph went back into the hospital for what was to be overnight IV fluids and turned out to be the last time. And the week of his death it iced and snowed more than North Texas has seen in years. It all just draws me back to that time, even just imagining it. I am feeling so much stronger, so much calmer, so much more stable, but yet I am finding when Joe and I start to talk about Joseph and things pertaining to him, I tear up so easily. Frankly, even more easily than before. Can it really be just a few days short of nine months since he died? God, I miss him so much.

I lifted weights yesterday and today went to the new Craig Ranch fitness center and did 30 minutes on the elliptical. The facility is so gorgeous, its hard not to want to be there. And it really felt good at the time. I am hurting now though. The locker room is all cherry wood, has huge showers and rows of seated vanities, spa quality haircare products in the showers, hair dryers, fancy mirrors....whirlpool, sauna, steam room, luxurious, fluffy white towels, wireless Internet access throughout, each work out station with its own TV attached to the equipment and cable television....all overlooking this huge olympic sized heated outdoor pool for lap swimming. I am dying to go to the spa and get something done there...the scents coming from the area of their door make my toes curl with pleasure. Its a wonderful benefit. The new Craig Ranch clinic location goes "live" on Monday...the move has been like, well, trying to relocate a huge company. Lots of little things going wrong, lots of hurry up and wait. But I am hopeful all will be ready for the first patients to come through the doors Monday morning. I don't have my computer yet and actually got sent home with pay yesterday simply because there was nothing to do. I am anxious to be up and running. Getting paid to sit around isn't my forte.

Joe and I have errands to do this weekend such as getting a new printer for the house and a wireless mouse for his laptop. Nothing too exciting. I bought some bulbs today to plant for tulips and the like for next spring's flower beds. I am hoping to buy some shrubs and/or trees for the back yard. The tomato plants have new life and are producing like mad, especially the one with grape tomatoes. Amazingly enough, the green pepper plant that did absolutely nothing over the summer suddenly has baby peppers starting to grow. We had a little plumbing issue come up last weekend and got that taken care of. Unfortunately it did get on the new hardwood floors but we are told all will be well and go back to normal in the warped spots within 60 days, after it dries out good again. We have our fingers crossed.

Things are relatively calm and uneventful here otherwise. Nick has an orchestra concert on Wednesday that I am looking forward to. Both boys seem to be settling into the year nicely. Let's pray this nice, quiet period in our lives lasts a while longer. Its been good to not be in a panic over anything.