Wednesday, December 31, 2008

Write the New Year

I poured myself a cup of coffee this morning and then proceeded to sit here without taking a single drink prior to its getting cold because I forgot I had done it.

I sit here within the yearly mess that fleetingly makes one wonder why putting up Christmas decorations is worth it. I got most of them down yesterday, including the tree and now my living room looks as if it forgot to put on its pants. Something is missing. As I was taking down all the precious trinkets and carefully packaging them to survive another hot Texas summer in the attic (and a potential move to a new home), I pondered why the memories don't flood the same way they do when I am putting them up. I find taking it all down so blue and hazy, like a cold gray day that needs to be muscled through. I guess I don't like packaging things away. Its done on the faith that next year will be the same happy unpacking as it was this year and preparing everything for that once-a-year moment. I could not help the line of thought that made me wonder where we all will be this time next year. So much can change in a year, and that sensation has lingered in me through to this morning. I found myself turning to Joe in bed last night professing undying love in a half asleep state, curling into him as if his body itself could absorb me. I thought of my Nick, off at a winter camp with the Scouts, and fretting if he's warm enough, the feeling of that nearly grown red-headed boy sliding away through my fingers before I really got to enjoy holding him, and the inevitable guilty knowledge that if I did not savor him fully, its my own fault. I thought of Alex down at his father's house, how I'd daydreamed about spending these extra days I have off from work with him and that I had told him to call me when he was ready to come back up here to spend some time with me. I vaguely knew he might not....all his friends are down there at his dad's house, and I struggled against hormonal hurt that he really didn't call, that he's still there and my time off is half over now. Its silly really. He'll be here tomorrow. But I feel it all slipping by me so fast. And of course, I thought of Joseph, already gone, my standing proof of how unpredictable life is and how not in control I am over my own little universe. This all sounds very morose and I suppose in its way it is. But the overwhelming feeling I have inside is really just that of love. Of wanting it to go on forever. The TV stations keep playing these montages of the faces and lives of famous and notable people who died in 2008. Last year, watching those were a torture, seeing the faces of those who died in 2007 and adding one more to the slideshow, the brittle grief of knowing my oldest child was amoung those who died and whose heart and accomplishments in my mother's heart mirrored all of those paraded across the screen yet so many on earth were never even aware he existed at all. This year I just watched all those faces, watched the videos of them while they were alive and marveled at how short life really is. That sounds so trite and cliche, but I have an understanding of it that I think most do not. I'm not stuck on that fact other than the realization that living with awareness is all we really can do. And when I live with that awareness, I find myself already wishing for more time with all of them. Its so hard to live in today. But that is my resolution this year. Live consciously, live the now. And my other resolution....write it. Write about it. Write Sheri. It preserves your sanity in a way nothing else ever has, no religion, no drug, no memory, no person, no experience. Write. Write. Whether people read it or not, write your heart. Write the New Year. Make this journal reflect the music of your life.

Friday, December 26, 2008

Time Grows Heavy

It is all over for another year. I have always hated the end of Christmas...its so loud and colorful. So all emcompassing. And when it ends, its so silent, and the grayness of the world shows itself so devastatingly fast. And I am never sure which part was real, the colors or the gray beneath it. It was always that way for me.

This has a whole new flavor now, this my second year without Joseph. His illness through the holiday season was defining from that point forward. I have done a good job this year of incorporating my sense of his spirit into my spirit of the season, but now as the gray sky lightens, this day after Christmas, the memories are there, solemn faced, looming, holding their hands out to me, whispering softly "Walk with me". I found myself in tears a couple of times yesterday and in Joe's arms. I didn't give in, didn't let them take me over, and it was a good, good day. Today it is harder. There is no music or laughter or anything like the celebration or food to distract me, only the bright lights of a tree that is empty below and I know they will be going away soon. So symbolic of this time two years ago when he lingered on and on in PICU, when we knew he was going to die but neither his doctors nor we were willing to surrender to acceptance that there would be no miracles on this earth for this beautiful boy.

It is a tightness in my chest, a gripping of my throat, soft, clenching, present with me. I am called to his graveside; I am called to his path. From now until January 10th, there are memories that from the outside might look like the same blank page playing over and over again, but in my mind, are patterned with the subtleties that lead us the unforgiving pathway to surrender. Our own green mile. Life between now and then will be peppered with those memories and while I recognize this, I am at a loss as to how to cope with it and how to take its power away. I am not sure I would want to if I could. It was part of him, this final, valiant struggle against death. And I would never wish to forget any part of him.

The house smells of fresh coffee and the air is damp with a whisper of rain. I want to sink away now from the hullaballoo, let go of that fancy ship and float away in quietude and reflection. Last year it was a hammer, a baseball bat to the head. One year since I had seen or held or talked to my son. This time, marking two years, doesn't have the same violence. Just cotton-soft presence; this ethereal sorrow. In Lent, we Catholics do the Stations of the Cross, a ritual of prayer and remembering, telling the story of the last walk of Jesus prior to his death. This is my equivalent, the tears of the mother, remembering and praying, holding the stories of the last walk of her son. Touching the private, precious places inside the hollow place that exists every moment of every day now that he is gone. It exists alongside every happiness and savored joy. Neither one is a smokescreen for the other; both are true, these seeming polar opposites, twins of the same mother holding hands in my soul. I am the luckiest woman I know. I am the most sorrowful person I know. I count my blessings with a full heart every day. I mourn.

Friday, December 19, 2008


This is it...the beginning of the most exciting time before Christmas. If you ask Alex how many days he can practically answer down to the second. How I am going to miss this. He is my youngest. I cannot expect the magic and wonderment to last many more years I suspect. We had our annual viewing of The Polar Express tonight. I made popcorn the old fashioned way in a kettle on the stove tonight. It tastes so much better than microwave popcorn. While I was making it, Nick walked up and peered over my shoulder at me jiggling the pot, the glass lid letting him see the kernels popping, and he said to me "Well! THAT's a new way of doing it!!". Joe and I cracked up and tried to explain to him that making popcorn that way was actually the original way and the microwave version is what is new. The idea of a world without microwaves and cell phones is as foreign to my kids as a world without electricity was to me at their ages.

It seems every year when I see The Polar Express, the meaning of it alters slightly and speaks to me in a different way. I always cry when I watch it, which I guess is a weird reaction. I don't know many other people that do, but it gets me right in the heart; right in the gut. The music in particular moves me. I think I will always choose to believe in Santa. I believe in things I cannot see. I have faith in that which I cannot touch, but can only feel. If anything, the spirit of Christmas is more alive to me now than ever.

I am taking Nick out shopping just the two of us tomorrow and we'll have lunch together. I got to do this with Alex the day after Thanksgiving; it will be nice to do it with Nick now. I have more peanut brittle to make and candy. On Sunday the boys are having Christmas with Stewart's family and Joe is taking me to the Blue Mesa champagne brunch. After that we are going to make the drive to Providence Village to look at real estate and to see how far away that community would place us from the boys. I suspect it will be too far, but there sure are some nice homes out there for sale at much better prices than this close in to Dallas. We'll see what comes of it. Most likely nothing. Its probably too far, further than I want to be while the kids are still young enough to care about me being around every day.

So six more days, five as of tomorrow, as Alex informed me as I was tucking him into bed after his handful of pills and growth hormone injection. How lucky I am. I would give anything to be able to continue watching Joseph grow up. And now as I get to watch Alex, whom we also weren't sure would survive his illness, I want only to hold him right here, in this place, at this age. While he still wants toys for Christmas more than electronics. While he still comes to curl up against me on the couch. While he is still unafraid to demonstrate how much he loves me. Nick is at the funky age where he wants both toys and things that are more mature. I got him some of each. I hope they have a good Christmas. Its funny that I fret so much about the gifts. I can't recall a single thing they got from Santa last year. The gifts are so not important. This is the important part. The anticipation. The creation of memories. The honoring of traditions. I try hard to keep that in mind when I think of "Just one more thing...." and try to talk myself into it.

Wednesday, December 17, 2008

About Joseph's Illness

Every so often, particularly this time of year I notice, I get entranced with seeking out the latest research on Joseph's type of cancer. The very names ot the types of chemotherapy take me back...words we tossed around as if they were a part of every family's diet....etoposide, Mitox, Ara-C, myeloablasion, CNS involvement, prognostic indicator, Inversion 16. It is odd to feel the tinge of nostalgia within these awful memories. I continue to wonder what we could have done differently, and continue to come up empty handed when I do get to wondering.

In any case, I just found this report from The Oncologist. It was accepted for publication exactly one week after Joseph's death and appears to be the latest in research on his type of cancer. It is written in a combination of medical and layman's terms and may be a difficult read, but if you have ever wondered about his illness and what we were facing (and KNEW we were facing), particularly after he relapsed less than one year since he had gotten into remission, this outlines it all in black and white.

It is both affirming, that the odds were vastly stacked against us (he had between a 10 and 40% chance of survival depending on a number of factors), that we did everything we could (I see nothing in all my research that we did not try, ever), that he was every bit as sick as I thought (because I often wonder if I invited this tragedy into our lives by being so afraid). He had very poor odds. He was extremely ill. We did everything that is currently known in the medical field to do. It calms my shaking soul to know these things. Its so natural to want to blame someone, and when there is no one, to want to blame myself. Accepting that there was literally nothing more to be done...has been difficult. I am learning to.

Friday, December 12, 2008

Stockings and Cookies

Joe-Gi died just after Christmas time, and spent his final Christmas on this earth in a drug induced coma on a ventilator at the hospital. We still had words of hope from the doctors at that point, and we kept his wrapped gifts and his stocking, praying for the day he would be able to wake up and breathe on his own again and he could open all of his gifts, which were plentiful, sent from across the globe by people who read my journal online and were moved by his heroic journey. Sadly, he died on January 10th and never got to open any of his gifts. One of the most painful tasks after his death was unwrapping all the things meant for him and deciding what to do with them. Most of them we donated back to the hospital children's ward. I never could, though, bring myself to unpack his stocking. Several months after he died, I got the strength to gather up his things and put them all into a giant Rubbermaid container to be moved into the new house Joe and I bought together. I wasn't ready to put them out of sight though, and that container has lived in our bedroom until recently, when, with the renovations going on, it was moved into the garage to be sealed up tight and taken up to the attic for storage.

Nick asked for Joseph's stocking this week. He is playing in a holiday concert with the orchestra at school today and they are going to hang stockings off of their music stands, and Nick wanted to bring and hang Joseph's, in memory of him. My immediate response was to say no. What if something happened to it? Nick isn't the most responsible guy on the planet, and what if he forgot it at school or lost it? But as the week went on, I decided to let him take it. He has his own grief journey to work through, and for me to be protective of Joseph's things as if they belong only to me and my own path to healing would be wrong. I vaguely knew I had never emptied out his stocking and that I would have to do so in order to give it to Nick to take.

So I did this last night, prior to our annual cookie decorating with their father. It was so bittersweet, reaching in and finding the things that he would be way outgrown in appetite for now, presumably anyway. A huge package of temporary tattoos. Curled up crazy straws. Bouncy superballs. Down at the toe I found a package of gum that he liked, still unopened. A black stocking cap with some cool, bad-ass design on the front. And I found two gift cards people had sent him that I had forgotten about, one to Kohl's and one to Old Navy. I left all but the gift cards and the gum in his box and brought the stocking in for Nick, Joseph's name embroidered on the front. It was not the same kind of sorrowful as I dealt with Joseph's gifts. I probably did that too soon after his death and should have allowed myself to wait. This was not nearly the impact of pain that was, just a misty, blue missing him. I'll get his brothers something with the gift cards, or donate them to the families we have adopted at Cooper Clinic for the season. And Nick can display Joseph's stocking at his concert today and have his big brother in his heart as he plays. We've all got our path to walk. I know that Joseph would approve.

As we sat down to dinner as a family prior to decorating cookies, Come Sail Away came on the radio. Stewart and I exhanged looks, smiles and felt his slender fingers stroke our hearts. He's always with us.

After dinner we decorated Christmas cookies, like we have every year, using my Mom's old recipes. We laughed a lot and had a lot of fun, though I had to put my foot down at one point to stop them from making zombie teddy bears and snowmen designed to look like they were vomiting or "have the plague"...their words..... Not quite the festive look I was going for, but there are a few of those in there. Hopefully either nobody looks at them too closely....or that they have a sense of humor if they do. Is hard to get young boys concerned with making things pretty. It was a warm and wonderful evening.

Wednesday, December 10, 2008

Gentle Haunting

I awaken this morning to a soft, tender, precious sorrow and I sit quietly on the wings of nostalgia. We've had a cold snap and last night there was sleet with a touch of snow - forever now a symbol to me of Joseph, his life, his journey, his death. Two years ago today we began to realize that Joseph was going to die. He needed 80 breaths per minute to keep a 70% oxygen saturation in his blood. The boy who hated anything on his face had begun to panic without his oxygen mask. The boy who was so strong, so vital, needed me to catch him as he returned from the bathroom and called to me with a vocal panic I had never heard from him before because his legs were suddenly incapable of holding him anymore as he negotiated the three feet from his hospital bed to the toilet.

It may seem strange to those who have not been there, but these memories, though sorrowful and painful, are precious to me. What a privilege it was to be his mother. What a privilege it was to serve his noble soul in such a way, to have that kind of trust, that through every distinct chink to the armor of his dignity, he turned again and again to me, to his father, without shame or worry about what we would think as his body began to fail him in ways that would mortify and humiliate. It was an honor to be there to catch him and that he trusted me to do so. I cling to that sometimes, when the failures I have made as a mother weigh heavy on my mind, when the knowledge of how much we put him through in our desperate attempts to allow him to grow up, to keep him still with us chink at my own armor of dignity and open wounds of shame. I remember he called to me and he collapsed into my arms, not with the trust and love of an infant, but with the acceptance and faith of a person who knows they are loved unconditionally. And he was loved unconditionally. His illness taught me so much about myself, so much that it feels selfish and unbalanced. I never considered myself to be anything much, and I admit there have been times in my life that I have railed against the depth of my seeming unimportance in this world, my apparent invisibility and my self-perceived weakness and otherness that I felt kept me forever separated from the meat of the world, on the sidelines, different. I have sinced learned things about myself that render that line of thinking impotent and transparent. It is not that I now believe myself to be central and important. Quite the opposite. I learned acceptance. I learned strength. I learned there are a hundred small ways to make another person feel less alone, even in the midst of a battle so personal there is no way anyone could ever really join them there. I have felt my own version of that and have felt the soft touch of hands in the dark, heard the word of gentle encouragement that got me through another moment, another hour, another day. And I have been gifted at times to be the one to provide it elsewhere, to whisper 'I see you' in the way that only another tormented heart can hear and understand. There is something in this kind of suffering that is so raw, so dignified. It comes with an acceptance that there IS no being saved from it, and there is a certain beauty in that. It is in this kind of burning that things are forged from raw material, that something strong and beatiful is created, the heavy threads of sorrow and suffering giving off faint echo to those who know, to those who hear. Joseph's journey gave that to me and living with all that is encompassed in his absence continues to as well. And so I am somber and quiet today, humbled by the depth of instruction from my 13 year old man-child. I continually learn from him, from the memories and from all that has happened through it and since. It IS possible to laugh when you are hurting. It IS possible to whisper when you cannot breathe from the fear. There ARE hands to hold in the darkest of night. And if you let them, there ARE people who will walk through the fire with you, though rarely those whom you thought would or should be there. They cannot feel or take your pain. But amazingly, they will feel their own, voluntarily licked by the same flame in their willingness to see you through it. I did this for Joseph, as did his father. I did it for his father, as he did for me. Joe, Heather and all my friends to whom I am close did this for me and continue on, and I feel their relief as I step away from that inferno toward cool, calm waters. But I do look back at that raging fire. I do still feel its heat from time to time, and yearn for the soul whose spirit was so transformed by the experience that he lifted gossamer and purified into the ethereal night. I see you Joseph. I still do.