Tuesday, April 28, 2009

Alexander's Journey

I spend so much time here focusing on Joseph and his cancer journey, his death, my loss. I often get people who ask me how I can hang onto hope. They don't know how I do it. They could never be as strong as me. They could never handle it if that happened to their child. I have to say, when my head isn't necessarily in the right place and I am not feeling charitable (because usually I DO understand that most people MEAN well even as they stick their feet in their mouths), it angers me. Yes, you could. I am sure nobody MEANS to imply they love their child more than I did and do mine. Surely they don't mean to say that. They are trying to pay me a compliment and 90% of the time that I how I take it. 10% of the time, I am cranky and think "Bullshit!"

In any case, this young man is a big reason why I can see miracles even in the face of the tragedy of Joseph's loss. Alex is 11 years old now, but when he was just barely turned 5 we found out he had a brain tumor called a Craniopharyngioma. This is a benign brain tumor that behaves malignantly. What that means is that it cannot spread to the spinal canal, but it can invade different structures in the brain and it is a recurrent tumor. It tends to come back. Believe it or not, in the brain, a benign tumor can be just as bad as a malignant one. There's nowhere for the tissues to go when locked inside the skull. Any swelling is bad. And benign tumors do not respond to chemotherapy. Some respond to radiation, but radiation to a five year old's brain can be devastating. We had no choice but to go forward with all the risks involved in the attempt for a complete resection.

Alexander's tumor was about the size of a golf ball and had grown around to encapsulate his pituitary gland. It was near the optic nerves and the center of the brain that controls personality and appetite. We were warned he might come out of his surgery blind, a completely different child in personality and with the inability to ever feel full again..that he may have an appetite disorder that causes him to have the drive to eat incessantly. We were warned he might develop a criminal personality, that he may eventually die of severe obesity at a very young age, that we may need to get a chain and lock for the refrigerator. And of course there were all the usual risks of digging around all the blood vessels of the brain and what have you. It was a very dark time in life, as Stewart and I were going through our divorce right in the middle of it and things were not as settled then as they are now. To be honest, I don't like to talk about it much. What's weird is that it looks like a walk in the park compared to what Joseph went through, but it wasn't. It was horrible.

We had a party for Alex the night prior to surgery at Chuck E. Cheese. He was in preschool at our church and his little friends came to be with him. It was as if he were celebrating, as if he really knew what was coming. I suppose on a rudimentary level he did. He had "lifesavers" on his head to be used by the surgeons the next day to help locate the tumor, but that didn't seem to bother him or his friends. They had a blast.

The surgery took a total of 14 long hours. He has an incision from one ear to the other, zig-zagging across his head to keep his hair falling naturally and not just on either side of a long scar, creating an unnatural part. His face was folded forward through to his brow and the front portion of his frontal skull removed. They then went along the side of his brain to approach the tumor up from underneath and to remove it painstaking bit by bit. Every hour or so they would call us from the O.R. to tell us how things were going. We were given our own private waiting room. It was hell. Friends came and played cards with me, which helped.

The tumor contained a viscous, oily substance that is very toxic, and some of it spilled out as it was resected. After he was cleared to go home, his head swelled up like a mushroom and he was raced back to Children's, where he was diagnosed with chemical meningitis...probably the most frightening part of the whole ordeal. He was a pretty sick little guy, with no desire to play, talk or interact....which is truly disturbing in a five year old.

Alexander lives his life with a host of medical management, as he has no endocrine function at all. The pituitary gland is the "mainframe" gland that controls most of the other glands in the body. He has medications that replace those functions and gets growth hormone injections six out of seven days of the week. Without his medications he would swiftly die. We are going on six years since the tumor was removed and Alex continues to thrive. He is a straight A student, plays sports, makes friends and is active in Scouts. He has a normal life expectancy, though he will need to be checked for recurrence all his life. Should the tumor return, as he gets older, the less risky it will be to do radiation on it, which should eradicate it forever. This is my Alex in his school picture for this year...fifth grade. His scars are nearly undetectable. He is the most inspiring person I know.

Sunday, April 26, 2009

Dappled Light

Closets can become a very intimidating thing for anyone who has lost someone close to them, but perhaps most so for a parent who has lost a child. And one cannot move from a home without having to do a fair amount of closet cleaning and organizing, first for the sale of the home and then for the move itself. Needless to say, there's been a fair amount of closet cleaning in my life these days. I marvel that for a house that Joseph never lived in, and for a woman who was so careful to put everything I have of him in one place under the presumption that I still want to know where he is, so to speak, that little pieces of him continue to leak out of my neat organization and into the furthest reaches of my home and my mind. It is symbolic on so many levels. I cannot contain my grief. I cannot relagate him to the past nor to a neatly controlled place in the present. Because he is not in any one place, connected with any one thing. Joseph is always here, always with me.

I found the above picture while organizing and thinning out our closet in the master bedroom yesterday afternoon. I am pleased to say that while finding such memories still knick my heart with pangs that can only be categorized as pain, it is the kind of pain that tweaks a smile even as it tempts the tears. Proof he was here, and by its inexplicable location in the closet, perhaps proof in its own way that he still is...not so much that I think he is haunting or physically rearranging things, but more a sense that just the way belongings tend to "wander" about a home, his spirit undoubtedly wanders somewhere, everywhere. The picture is poignant and inspires both memory and thought...a glimpse, a "where's Waldo", a impish look, a "here I am, down here"...a reminder that if I do not pay attention, I may miss something precious, something joyful and fleeting.

Moving is so hard. I have so many worries, so many questions and so much baggage from my past. We are upgrading our home. We've both worked hard for it, we've planned and saved and talked and handled our money with utmost responsibility and care. There will never be another opportunity like there is right now in terms of the tax break and the interest rates and it would be foolish not to take advantage of it when we have both the means and the desire to do so. But I find myself, as I wander through beautiful homes, catching my breath, holding my stomach against inner turmoil and feelings of anxiousness...as if I need to hide. As if I do not belong there. It is so much more than I ever hoped I would have. When Stewart and I divorced and the world fell apart in every sense (and I with it), I came to accept I was going to only have so much in life. That I only deserved so much. At first there was anger at the death of so many dreams, but then there was acceptance and an eagerness to embrace what hand I was dealt and to get on with it. I put away the dream home idea, put away any thought of ever having any kind of financial prosperity. And I was fine. I lost the bitterness and any sense of entitlement. Alexander's and then Joseph's cancer solidified that into my soul and I became a better person I think. But somewhere in there apparently was a tiny voice that recognized mistakes made during that horrible time and whispered "You got what you deserved".

Joe moving here and buying us a house fulfilled so many dormant desires that I no longer touched. It was like throwing open the windows in a dusty, cobwebbed attic, cleaning everything in sight and revealing a treasure-trove put away. A life partner. Daily support. A leave-taking of loneliness. A lovely, physical home surrounded by green and flowers, filled with the life-standards of comfort, forgiveness and joy, beyond but including contentment. There was no restless bird inside to silence or sooth...it had long gone quiet in my refusal to pay it heed. But it flutters again now as we look at improvements still further, squawking out warnings of the danger of asking too much of the universe. We have been given our slice of happiness. Do we reach too far (do I reach too far) to dare to dream of more? I feel the yearning forward, countermanned by the anxious backward pull, the niggling fingers of fear up my spine and the difficulty imagining myself there amoung granite countertops and brand new appliances. I have realized I still feel somewhere in me that perhaps I do not deserve it. I recognize it won't be hard to get used to a bigger home, a nicer neighborhood. Will I continue to recognize my blessings if I become surrounded by a still more bountiful serving of Plenty? Does accepting there is more to be had lead to a natural inclination to always seek out More? I do not want to be a suburban grasper. I simply want to be happy. We could use more space. We both like nice things. But I struggle with my fear of loss, of being punished for daring to awaken that optimism, particularly in times like these. And I fear I am still haunted by an inner sense of undeservedness.

Joe listens and understands. The stress of buying a new home is not lost on us, but so far it seems to have awakened a deeper communication, solemn, serious talks about finances and fears, hopes and desires. I love talking with him. I love exploring his mind and how he delves into mine. And I love the glasses of wine and the touch of his hand that always comes, drawing me to him....the mental connection of long deliberations, perhaps inevitably, seeking to solidify in the silence of physical, emotional.

Nick and Alex get home from scout camp around noon. I have no doubt they will be filthy, tired, jubilant, arguing. I look forward to seeing them. The air today is silken with damp, the sky hidden behind thick clouds of spring. The day is busy. Life is busy.

Monday, April 20, 2009


I have never been a cereal eater. My stomach, which continues to have a real affinity for pretty much any kind of food, will tolerate its consumption readily enough but my sense of what is and is not food gets tangled up in what I refer to as
"the mush factor". This basically refers to the fact that cereal turns to goo about four minutes after pouring the milk and that I find this disgusting. I marvel though that those who enjoy cereal seem to have an almost addictive passion for it. In particular it seems to occupy a mental list of favorite night-time snacks for them. It would never occur to me to eat cereal at night and honestly seldom occurs to me to eat it for breakfast.

So it is out of the ordinary for me that I poured a bowl and attempted to eat it this morning. Joe brought it home yesterday. I liked the name of it. "Bountiful". Who wouldn't want to try something called Bountiful? Who wouldn't want a peice of that? Bountiful smells like pancakes. And falls apart even more rapidly. I could not finish my bowl...the soggy mess stuck in my throat, nearly making me gag...an interesting phenomenon given that it actually tasted just fine. I contented myself with drinking the flavored sweetness of the milk and left the mush to its own devices, where it promptly deflated and disintegrated to cold gruel. Yuck. I felt vaguely misled by the name.

Joe and I venture into the waters of change again. We are two cautious but confident travelers it would seem, battered a bit by the harsh blows of life but able to see it is worth it to press onward in a calculated fashion. We decided over the course of this past week to go ahead and put the house on the market as we had been planning to do when Cooper Clinic laid me off. The new job is acceptable and seems to be a good enough fit. The neighborhood we live in has seen a surge in home sales, with the majority of them staying on the market between 9 and 11 days prior to getting an offer. There just aren't that many homes in Allen in this price range, and it is a place people tend to want to live. It is a nice suburb with good schools, low crime and a slightly less frantic pace of traffic than you find in Plano, just to the south. The incentives to buy right now are unparalleled. The interest rate as we got our preapproval last week made me giddy.

So we spent yesterday purchasing things to spruce up the curb appeal. We trimmed back the monkey grass, straighted up the base of the crepe myrtles and sculptured the bushes back to neat, clean lines. Joe edged the sidewalks; I swept along behind him. We had picked out flowers at Lowes and spread red cedar mulch and planted them in the flower beds. "A spash of color, to draw the eye" our realtor advised. It looks better now than it ever has. We played music while we worked - Jimmy Buffett, Jim Croce, mixed songs from the glory days of the 70s. The wind blew like a gale and it never quite warmed to where we'd hoped, but the recent rain made the Texas clay more workable and the smiles exchanged in passing waves of dappled sunlight and ruffling hair felt like punctuation points of pure, unadulterated joy.

I found myself surprised when it was all finished how much my back ached, how tired my legs felt. I retreated to the shower to wash the red stain off my hands and pluck the mud from beneath my fingernails. I swear there are few pleasures more acute than that of getting clean after hard labor. Joe and I met on the back porch, showered and clean, a bottle of crisp white wine and two glasses in his hand, his book overturned on the patio table and Michael Buble singing my favorite songs on the sound system. I curled beneath the red knitted blanket some kind soul gave me at the hospital in one of Joseph's darker days, picked up my latest Anita Shreve selection from the library and smiled, watching the wind blow two recent dress purchases in sizes I have not seen in many years, watching them dry in the sun. We sat there together, we two, for an hour or more, reading, exchanging bits of banter...companionability bringing continued waves of peace and gratitude as the day began to fade. Unseen signals kept us on a timetable known and important only to us two, guiding the preparation of steak and lobster tails (T-bone for him, filet for me) on the grill, the formation of spinach salad with hardboiled eggs and bacon, baked potatoes and sweet potatoes with butter and salt. The light left the outer world and we retreated indoors, talking with animation...something I can marvel that we still can do this many years later, that we still have so much to say. How many lovers has time forgotten who were every bit as much contented and together as we? We love on borrowed time, our lives brief. My knowledge of this enhances the depth of my emotion, giving clarity, sweeping away so much pollution from long ago, the musky shadows of youthful expectations and romantic idealism dissipating like the mist that they are, leaving only that which is true. I am lucky to have found someone. I am lucky I was raised how I was. I am lucky to have such a life.

So we will find another house, something closer to our "dream home", a term that makes me laugh a little bit. My dream home is right here, not defined by windows and walls, but bound up within the understanding between two souls who have both known sorrow, heartache, failure. The dream home goes with us, no matter what building we house it in. I am fortunate to have what I have in my life. I am even more fortunate that despite the life lessons that brought me here, I have been given a spirit of understanding exactly how rare and precious it is.

Yesterday was a very, very good day.

Sunday, April 12, 2009

Dear Joseph

Dear Joseph,

Here we are, our third Easter without you. It doesn't feel very Easter-ish today with the rain, the chill and the blustering, howling wind. But it is a day of renewal nonetheless and a reminder of why I believe I will see you again. How do they celebrate Easter in heaven?

I wonder now how interested you would be in all this Easter Bunny traditional stuff. I suspect you would still enjoy coloring eggs with your brothers. Your artistic bend was deep and true to your soul. You'd be tall, I have no doubt. Next month you would turn 16 and be geared up to drive. You'd be finishing 10th grade at Vines and this coming school year would be your first at the Senior High, the very school I myself and your father graduated from. It is strange to think of, some kind of twilight zone that almost came true.

My thoughts today are on your funeral, where you remain in my mind's eye a 13 year old boy who died, my boy. It is interesting that I can vaguely imagine you older and more mature, a hazy vision on the periphery of consciousness, like looking at an image through frosted glass. Again, an echo of what might have been carried now only on a windy whisper, no longer an air of promise, but one of wistfulness tinged by sorrow. Nothing that happend to you was supposed to have happened from my motherly point of view. It is two years since your death and I now look back at you with a paradoxical sense of your having really been here and yet a wonderment of angst and fearfulness that perhaps you were never more than a spirit that flitted in and then out of my life. It is hard to reconcile the solidity of the being that I held and comforted, that I bore from my body and physically nurtured and raised...and the physical nothingness that you have become now. It is all swirls of emotion and sense, lingering shadows of a boy...a beautiful, wonderful, flawed, human boy. I miss your laughter, the steadiness of your love, the unceasing goodness that warmed from inside out of you, the impishness, irresponsibility, occasional orneriness, disobedience and independence. You were everything a boy should be and many things that many are not, sex and age aside.

I chose songs of resurrection for your funeral services on purpose. I did not want that final public farewell to be an agonized, teeth-gnashing, God-cursing affair that showed the horror and fury of my heart at the time. I guess at some level I knew I would want to look back on that event and be bolstered by spirital statements of faith that I still can have difficulty grasping with conviction but that fill me with hope and give messages of soothing peace, for you and for me. I enjoy now remembering the music and the experience, how many people were there, how many lives you touched. I hum the music and feel a surrender inside.

So that is what this day is about for me now. I think I will always be prompted to remember your funeral on Easter. Its the one day of the year the songs from your services are played out loud to the world. I don't go to church on this day...I cannot, at least not yet. But I hear and remember. I sing in my heart. And this year, I am touched by the knowledge that life itself is fundamentally a very, very good thing. None of our ends from here will be anything but poignant, and eventually all of us will walk the pathway you have set off on. That knowledge comforts me too, oddly enough. Yours was too soon, but not unusual nor even incorrect. It was not wrong for you to die. Premature is a different thing than incorrect. It enables me to look forward in every sense, to the life I have left to live to the inevitability of its end and our reunion. And it allows me to look back, to the fullness that was you, your universal nature filling a house, a room, a life, my heart with the unstoppable personality you were and still are. Acknowledging the goodness of this life let's me touch and hold the goodness yours was. It lets me be okay with the goodness that still is. I no longer have to try so hard to be happy Baby. You would like knowing that fundamentally, I am. And part of the happiness is that you were here with me...and that I believe you will be again.

I love you. I miss you. It is Easter and you are still here with me and in me.


Saturday, April 11, 2009

Eeew! A bug!

So I am doing my usual thing, up early, before anyone else, where I can enjoy my thoughts and activities in solitude, without interruption and without having to give any attention at all to anyone else. I love this time of day. One of my favorite parts is making the coffee for Joe and I. Its a tender thing, a sweetly submissive gesture of love and caring that I make most every day, but on weekends I get to enjoy it. I get to enjoy what it means to me, I get to enjoy the smell of it brewing. I get to enjoy knowing he is snug and safe in our bed and will awaken to the rich scent. I even enjoy the heaving hiss of the coffeemaker as it struggles to crank out our daily dose of legalized addictive stimulant.

So this morning is no different. The windows are all open...it is damp and cool and going to be a nice, somewhat cool day with highs in the 60s. The birds are all aflutter and everything is beginning to put on its spring finery. Foliage greens are so crisp at this time of year. I have been doing some research for a homework project on a very rare syndrome and coming up frustrated as I try to find enough information on it to equal a four to five page report. So I give myself a break and get up to make the coffee. I love opening the coffee container, the smoky scent of the grounds, the slight crunch of the spoon as it digs into the depths and pulls out small mountains of fragrance and the promise of warmth.

As it brews, I go back to my studying, punctuated by visits to social sites like Facebook and MySpace...guilty little vices that are harmless until they get in the way of things I really ought to be doing. When the coffee is done, I am ready. I procur my cup and the creamer from the fridge. I go to the coffee pot, already anticipating that first warm cup that I will now get to enjoy in guilt-free solitude.

And there, staring me in the face, right at the very top of the water indicator line of the coffee machine, INSIDE the machine....is a bug. GACK!! There's a bug in my coffee machine! I lean forward and study this offending entity. What's he doing there? He's a big one too....what is he? A beetle? A roach? There has been far more bugs this spring so far than I am used to dealing with in the house, but this has just gone too far now. I tap the glass and God help me, it moves. GACK!! How did it survive the brewing process? And now what do I do?? I can't DRINK this! It percolated in bugginess! And how do I get the damn thing OUT of my coffee pot? A vinegar pot won't kill it or remove it. Bleach will kill it but not remove it. I want coffee but I am NOT drinking from that pot. What do I do?

So I go back to the living room, empty cupped and unfulfilled, distressed. No coffee. And a coffee pot with a bug in it. That means no coffee tomorrow either unles the offender should choose to leave. Because as a certified bug-o-phobe, that sucker is not getting a confrontation from me. There is only one way to deal with bugs...avoid, avoid, avoid. Besides, since he's in the water indicator, I cannot possibly get him out unless I take something like a pipe cleaner and squish him up in there, which will do me no good at all. Then I have a SQUISHED bug in my coffee maker. GACK!! There's nothing to be done for it. Joe will have to take me out for coffee when he gets up and we'll have to buy a new coffee brewer. Bug 1: Sheri 0. Never say I'm not a gracious loser.

Friday, April 10, 2009

Just Musing on a Spring Morning

Here we are in April and it is Good Friday. I wish I spent more time on spiritual matters. I have taken to quiet little prayers more often lately, slightly more formal than my usual ethereal means of sending thoughts out into the Universe and hoping they get picked up somewhere by a loving God. I can absolutely consume my own mind with worry and as such turn myself into a neurotic without meaning to. Its not fair to those who love me to see me eat myself alive. I am my own macrophage. Negativity is like a cancer. It just grows and spreads without any awareness. I am working on healing myself of this.

Joe took me to lunch yesterday, which was just so lovely. We have such an abiding romance between us. Some of the most peaceful moments in my life have just been walking down a quaint street somewhere gazing in windows as eclectic restaurant menus and holding his hand. Being with him brings me serenity and security, which conversely can feed this desperate phobia I have of loss. We talked at lunch and I confessed some very neurotic thoughts, fears that he will leave me, fears that his obligations to his ex wife will eventually lead him to let me go. I felt like a child confessing these things. I realize on a logical level that they are both without grounds and are unfair to him. He seemed to grasp that it is not a lack of trust in him that makes me spin that direction and I am so thankful he didn't get annoyed with me for my childish mental fretting. Its been preying on me for quite a while now and I feel so much more settled today than I did yesterday after airing it out. I was so ashamed for thinking those thoughts and then for letting them bother me. My fear of loss is not normal and I recognize that I must lean more heavily on the things I know and let myself dwell less on the things I fear.

He was gone last week to Florida to see his sister. I missed him so very much that I laughed at myself. I got weepy the first night he was gone, coming home to an empty house with no lights on and no dinner made after school. It drove home to me the degree to which he both supports and spoils me. I kept myself busy after that with visits with friends. Saturday I took Stewart and the boys to Scarborough Faire and met up with some friends of mine and Sunday Joe came home again. Those are the pictures posted here. Nick and Alex absolutely loved it and got lost in a dreamland of medieval intrigue. I hope I get to take them back again this year. There was so much to see and do and we didn't get to see everything they wanted to. And we just love being able to dress up and immerse ourselves in whimsy. Honestly, its good for my soul. I am so serious so often. I like being able to tap into a more playful side. Obviously my friends enjoy it too, which helps me relax and not worry so much about my hair or my appearance. Its a little sexy, a little bit fun, very flirtatious, somewhat baudy. Just enough to be intriguing, not so much that I shy from exposing my kids. Nick's head was on a swivel watching all the girls in corsets. :laugh:

Friday, April 3, 2009

You Were the Pride of Our Hearts

"It's so difficult to let you go

Though death's left us no other choice

We're mourning the loss of never seeing you again

Of never hearing your precious voice

It seems that in life there are certain times

Which are more than "simply unfair"

When our hearts search out for better answers

But cannot seem to find them there

And such is the case at your passing

Contemplating the briefness of your life

All the great things that you still would have done

If you'd been granted a little more time

It isn't difficult to envision the possibilities

For look at what you'd already done

The difference you'd made in so many lives

In all that you had become

Perhaps you were simply too good for this life

So God called you back to Heaven

That your life needed no further testament

Than the goodness you'd already given

But regardless of the reason

For why you had to depart

We'll miss you every single day of our lives

For you were the pride of our hearts!

Thank you for being our example

Inspiring us through your courage and drive

We'll cherish all the precious memories

You lovingly created in our lives

For truly, your life reflected

A wisdom that few, so young, can see ..."

-author unknown