Wednesday, June 25, 2008

Random Wednesday Thoughts

The rush is short lived when the success from one exam bumps up against the potential failure of another. Tonight is my first lab practical, which has proven in the past not to be my strongest testing format. We shall see how I do. I am full of anxiety, but am headed out momentarily to hit the gym, which will help a lot I am finding. Getting up early to hit the gym is not my favorite thing. I feel a lot right now like I am just never quite getting enough sleep. But I do crave the activity. I am amazed how much it is doing for my stress level and for the brittlest feelings of grief. I feel more pliant, more open to life. I do a fair amount of meditating, interestingly, which I work out. I also love to take my Zune and block out the entire world but for the feelings roiling through me. I am subject to fewer violent storms of grief these days and carrying around something more precious and pliant with me, something I can hold and not feel like it is damaging me. Joseph has been on my mind a lot. But so has the rest of my family. That probably does not make sense to anyone but the others who have grieved their child. It just can get so huge, there is no mental room for anything else. I feel like I am carrying it in my heart like a tender, aching warmth rather than being suffocated by the equivalent of an elephant sitting on me. I am struck often now how lovely the world is at this time of year and I feel gratitude. I smile in the car more than cry and find myself mulling almost absently and without effort on how lucky I am. Life is busy and I find myself missing the kids. They are busy with summertime activities and I am in a crunch semester that is shortened by 5 weeks due to it being in the summer, which means a lot of information in a short amount of time and lots of study time needed. I am not getting as much time wih them as I would like but the time I am getting with them is productive and precious. I hope the memories are building in them as they are for me.

The world shall have no concept of us one day. Within the next 150 years, which seems like such a short amount of time, we will all be gone, every last person here, even the ones born today. And those who come after shall possess this world with the same surety that we on the planet do now and argue their arguments, share in the hopes. I do not know why I bring this up other than that I am mystified and amazed by it.

Tuesday, June 24, 2008

Last night was the first exam in A&P. I studied like mad over the weekend. Joe was a terrific help to me. He assisted me in making a list of all the other things I really needed to get accomplished over the weekend, then I tackled those things right up front. It was amazing how doing this freed up my mind to relax and reduced my stress tenfold. Knowing I had accomplished all he would want me to and all I needed to, even though the house was far from perfect, really freed up my brain space to let it go and focus on school work. I wish I had discovered this little secret sooner. Because he helped me make the list, I didn't feel like I was short-changing him by letting certain things go. And by having the list all checked off, I didn't feel like I was letting the ball drop on caring for our home. We have a very symbiotic division of labor in our house. We are very traditional in male/female roles and we both are happy that way. This trick is one I will use again and again when I need to take more than the average time for studying. In this case it paid off brilliantly. I got a 93 on my first exam last night. That has boosted my spirits and my confidence a great deal, and I registered just this morning for A&P II in the fall. I still intend to be open to writing, but being a nurse is not a goal I am going to let go of lightly. Frankly, if I can make As in A&P and in microbiology, I will likely just retake Statistics and make sure I make an A in that, then apply to nursing school with the 4.0 that reputation says I will need in order to get accepted. Its an exciting thought. And there is no reason that being a nurse means I cannot write.

Saturday, June 21, 2008

Karen

So. I have been tagged by Karen to create a Meme. Like others before me, I have no idea what a "Meme" is, unless it just means its all about meme. Mememememeeeee! That is, after all, everyone's favorite word at least some of the time. How nice to get permission to just blatantly indulge in it.

Here is how it goes: Think back on the last 15 years of your life. What would you tell someone that you hadn't seen or talked to for 15 years? How would you sum up your life? You get 10 bullet points. A list of 10 things to summarize you. At the end of your list, tag 5 more people and send on the love.


So here goes.

1. 15 years ago it was 1993. I was 22 years old and a newlywed living in a tiny apartment in Tacoma, Washington with a glorious view of Mount Ranier from the balcony and the Cascade Mountains beckoning from out my front door. I had been married to Stewart for a little over a year, who was in the military (Army) and stationed at Fort Lewis. I had just given birth to my first baby five weeks premature, Joseph Anthony. The adjustment to living in Tacoma had been very difficult for me. We moved me up there just days after our rather lavish wedding (Stewart and I had a long distance relationship prior to getting married. Yeah. Good idea that. NOT) and I was suffering from homesickness, post wedding blues and tremendous culture shock. The Pacific Northwest was amazing, but it was not Texas. And Texas had been pretty full of itself. Texas really really likes itself. I was shocked to find that everywhere did not want to be Texas in their heart of hearts. I had trouble finding work. Nobody seemed to think I was uncommonly pretty or even cute the way they did back home (amazing what being surrounded by friends and family does for the self esteem). I was gaining weight hand over fist (I have memories of weeping the first time the scale showed that I weighed 150 pounds). My mother, with whom I was and am very close, was back in Texas. And I was pregnant. I loved Stewart with all my heart but I was not used to being away from home, I was not used to being poor, I was not used to sleeping with a man every night and having to share the bed and I definitely was not used to having to put myself second to the needs of a child and a husband. To say I was unprepared and unequipped would be an understatement. But Joseph stole my heart away and I found things in myself I never thought were there. He was a very easy baby, happy, laughing, adventurous. We were a sweet little family, but I had a complicated pregnancy, a huge bout of postpartum depression and a 60 pound weight gain. Nothing felt familiar, comfortable, easy or right.

2. Later that same year we were stationed at Fort Polk, Louisiana. I began to have my first vestiges of serious depression, particularly when I found out I was pregnant again nine months after Joseph was born. Nicholas arrived a couple of weeks early, just after Thanksgiving, a sweet but needy little redhaired boy. I had managed not to gain a lot of weight while pregnant with Nick, but had never returned to anything close to my pre-baby weight after Joseph was born. There was little to no work to be found in rural Louisiana. I learned to enjoy the Cajun culture and I pushed myself to join Army wife clubs that helped me make friends and find a support system. I vacillated between being miserable and being content, but there was always an underlying feeling of unhappiness and loneliness. We were closer to Texas and I saw my family more frequently. Eight weeks after Nick was born Stewart was sent to Fort Huachuca for four months for military training. I learned to manage a toddler and a baby, both in diapers, quite well on my own and frequently made the drive to and from Dallas with the kids in tow. That time period was good for my self esteem. Nick and I visited Stewart at Fort Huachuca and I remember that though it had only been a few months, I felt like he was a stranger to me. I was lonely and becoming increasingly aware of the difficulties of military life and married life. I had definitely realized by this time that I had been more in love with the idea of being married than with the man to whom I had committed. I was unhappy, but convinced I had nobody to blame but myself. Stewart was a good man and did not deserve my unhappiness.

3. Our next station was Hawaii. I was both excited and trepidatious. Long way from home. High cost of living and we were dirt dirt poor. But it was HAWAII! So off we went. The jet lag with two babies is unbelievably hard and it took them a full month to find housing for us on base. Living off base was out of the question. Far too expensive. So we lived in one room in the military hotel on base until housing was available. We thought we were poor before. Life began to redefine that term for us. But the beach was free, so we went there a lot. I developed a love affair with the ocean, took up boogie boarding and worked out regularly, but remained about 50 pounds above my prepregnancy weight. I was frustrated and felt unattractive. I got used to living on an island, but home felt further and further away, along with the girl who had married into this situation. My life felt completely fractioned off from who I used to be. I no longer knew myself. Clinical depression set in in earnest. I worked for a time in Honolulu, but lost that job. Both Stewart and I attended college courses in hopes of finishing the educations we had started. He earned his Bachelor's Degree from Hawaii Pacific University in Computer Information Systems. In 1997 I discovered I was pregnant for a third time. I wept and could barely get myself out of bed. This was not a happy thing to me. On Valentine's Day of 1998 Alexander came into the world. Little did I realize what a light he would be in my life. Not long after that I asked Stewart for a trial separation. I wanted to return to the mainland badly. He said he wanted a divorce, not a separation, but later changed his mind. My mother, however, stated that she would not allow the children and I to stay with her and I did not know where I would go if I left. So I stayed. True misery began to set in for both Stewart and I. I blamed myself completely and varied between determination to improve my life and suicidal depression. Stewart had an old PT injury to his ankle that finally would not be ignored by the Army any longer. A failed surgery and chronic pain force them to discharge him for medical reasons. We returned to Texas, lost, unhappy, crippled physically on Stewart's part and emotionally on mine. The pain stole anything I had remembered of Stewart's good nature away. After that, we were never the same. It was, I believe in hindsight, the beginning of the end.

4. We returned to the Dallas area and lived with Stewart's parents for a while, which was not good for any of us. Joseph started Kindergarten in Hawaii, where he'd had problems socially relating to the other children and listening to the teacher. He had the same problems when he started back at Kindergarten in Texas. We suspected he had Asperger's Syndrome, but it was not the common thing then that it is now. Nobody had heard of it and nobody would listen to us. Joseph was a strange little creature and baffled most people who did not know him. We rented a sweet little hosue for a short time, then used Stewart's VA loan to buy a house. Stewart suspected he himself had Asperger's Syndrome as well, a fact that I believed but could not embrace or sympathize with. I had three children and needed Stewart to be whole, to be a provider, and to accept what I considered to be a "normal suburban life". He continued to struggle, losing a couple of different jobs. I went to work in a medical office doing referrals, then quit to start my own medical transcription company. I became involved with Mary Kay and struggled to find happiness inside myself. The kids were a strain for me. I felt as if I were drowning in responsibilities as Stewart became more and more emotionally disabled along with the continued dysfunction of his ankle, which made any kind of family activity hard. We had no cohesion financially, and not long after being named Employee of the Month he came home and announced he had lost his job and that he never intended to get another one. I had been spiraling downward for some time, having trouble getting out of bed some days and in general so depressed I could not see straight. Stewart's job loss and subsequent surrender of effort to maintain outside employment was the straw that broke the camel's back for me. I floundered. I went online seeking solace. I am not proud of how this time in my life played out and I have so many deep, emotional regrets. I just wanted out. The same month Stewart was fired my main client went bankrupt. We had not been planning things well nor living particularly within our means, though not so bad in hindsight that we could not have fixed it. But I was done. I felt as if making things okay resided completely on my shoulders. The needs of Joseph, who was finally diagnosed with Asperger's officially and who was struggling with horrible cruelty in school from other children, and Stewart, who seemed to have given up on life, plus Nick and Alex and all the financial mess bore down on me. I wanted to absolutely die. I could see no way out. For some time I honestly contemplated suicide. In the end, I gave him my business and fled. I moved into a one bedroom apartment. The boys slept on the floor when they were with me. Stewart and I started the process of divorcing. It was a horribly dark time and due to only get darker.

5. We wanted to do our best to maintain a good relationship for the sake of the boys. I had a new boyfriend, Joe, who lived far away. We started a long distance relationship and I maintained an active fantasy of running away to live with him and getting my life together. I didn't think what would happen to my family or the kids, only of this one little portion of my life that gave me guidance, light and hope. We saw one another once a month, during which times I found respite, tenderness, love and healing. I got a new job at an orthopedic clinic taking care of patients needing testing at other facilities. I loved that job and loved where I worked. On Easter Sunday when Alex had just turned five, I was at Stewart's place doing Easter baskets with the boys and him. Alexander had been having headaches and the doctors had prescribed allergy medication for him. But on this day, he had the headache to beat all time, writhing on the floor, grasping his head, crying, saying he felt like he was going to throw up. We did not know what to do and ultimately Stewart took him to the emergency room while I shuttled Joseph and Nick off to Stewart's parents' house. A CT scan in the ER showed a mass in Alexander's brain. It all became very surreal. He had a 14 hour surgery a few months later to remove the tumor, which thankfully went extremely smoothly. But the horror of that time is almost unspeakable. After he came home from the hospital, Alexander's head swelled up terribly, he spiked a very high fever and we returned him to Children's Medical Center, where he hovered in the emergency room in utter misery while they tried to figure out what was wrong and what to do. Another week in the hospital with chemical meningitis. The type of tumor he had has cystic components, the contents of which are toxic. Some of this spilled out during the surgery to remove it and irritated the lining of his brain, making it swell and preventing normal movement of cerebrospinal fluid. It was a touch and go time, but eventually he recovered, returned home and started kindergarten, swollen from steroids and on a host of new medications. He lost his pituitary gland to the tumor and would need close follow up and careful medical support the rest of his life. He got a wish from the Make A Wish Foundation and Stewart, the boys and I took a trip to Disney World in Florida together as a family. It was a strange time and I remember being very tense.

6. Life began to settle down after this. My relationship with Joe began to mature and deepen. The divorce long finalized now, I found myself deeply in love, happy at work, doing a good job of parenting my boys again and able to care for my own financial responsibilities. Happiness began to take bloom and I started work on other issues, namely my physical health and weight problems, which had spiraled to about 280 pounds from the 135 I had been the day Stewart and I married in 1992. I started to eat right, began walking, then weight training, and in eight months I was 80 pounds thinner. Joe took me on a vacation with him to Myrtle Beach. I was happier than I had been in some time, but yet a horrible underlying depression lingered that I could not name or explain. During this time my father, who had been a gruff, determined, financially successful man began to have problems with cognition, balance, tremors, loss of ability to have facial expression and errors in judgement. He eventually was forced into early retirement, which made him miserable. He began to fall frequently, to choke on foods and to have trouble with bowel and bladder control. He was diagnosed with PSP, a parkinsonian disorder that ends after about five years in a horrible death. Dad was not supposed to drive anymore, a fact that made him crazy, and he was not supposed to do certain things unattended. He had a lake house on Possum Kingdom Lake that was his pride and joy and he often wanted to be there, to fish, enjoy the wildlife and reflect. After my brothers took him there one weekend, they left on Sunday with severe warnings to him not to take the boat out alone. But Dad was a stubborn man and difficult to care for, as he would not admit he was ill. He did take the boat out alone, and on the following Monday our family got the call that his body had been found floating in the lake, his boat moored in the mud a mile or two away, out of gas, his fishing line still hooked up and a bucket of minnow bait all dead but still there by his line on board. He had fallen off the boat and had not been wearing a life preserver. The man who ruled my world and remained elevated above all men in my mind was gone. A downward spiral began. Two weeks later, the job I loved was sold to another company and eliminated and I found myself out of work.

7. After a few weeks, I found another job with a urology clinic doing medical transcription. It was a slow paced office and laid back job, very different from where I had been before, but it paid well and I was going to be okay financially. Stewart and I were getting along well and he had even moved into the same apartment complex that I was living in. I saw the boys regularly and life seemed to have stabilized. Stewart met a woman who did not feel comfortable with the close methods in which we raised our children despite our divorce and problems began to surface between us. Darkness was enveloping me, to the point that it began to affect my relationship with Joe and my ability to be happy from day to day. I was not gaining the weight back, but I was no longer losing. After a particularly bad time, I decided to get some help, and slowly, slowly my depression began to lift. I continued throughout all this time to fantasize about how to move up north with Joe, who had made it clear he would never be moving to Texas. I saw no solution for it, despite attempts to make it work, but the relationship satisfied my needs as it was and I loved him. We discussed and consciously decided on several occasions to just let life happen and see where it took us. I was happy with a man for the first time in my life. Then crisis struck again. Joseph had not been feeling well. All the boys had a summer virus and I thought his was just taking a long time to go away. Then he got abscesses. Then his gums swelled up horribly. Then he turned dramatically, frighteningly pale and showed up with bruises in strange places. Then he began to die. On June 1st of 2005 Stewart took him to the doctor, as he was too sick to get out of bed or act normal in any way. Little did we know how close to the edge he was. His blood counts were out of whack and his pediatrician had Stewart rush him to Medical City where the pediatric oncologists were waiting. Joseph was diagnosed with leukemia and was horribly, critically ill. He almost died that day. I raced from my office, where I had been working less than a year, to the hospital, where the whirlwind began. A bone marrow biopsy revealed that day that Joseph had no remaining normal blood cells. His bone marrow was 100% packed with cancer. His spleen was distended and packed full of leukemia. His liver was enlarged. His white blood cell count was over 180,000, all cancer cells. They saved his life. He actually felt better on chemotherapy than he had prior to getting it. But the kind of leukemia he was diagnosed with was rare, AML, diagnosed in fewer than 500 children in the US each year. We were hopeful he would be on the better side of some pretty awful statistics. Stewart had moved in with Lynda, his girlfriend, and the tensions had continued to be quite high from her toward me. She disliked that I expected to continue to raise my children with Stewart as my partner rather than her as a go-between to keep Stewart and I from having contact with one another. My refusal to cooperate with this meant that Lynda and I no longer spoke and the relationship with Stewart was the most tense it had ever been. After Joseph's diagnosis and hospitalization, she and I began to tentatively reach out to one another. It didn't get far though. Three weeks after Joseph was diagnosed, while I was working late at night to make up hours at my job and Stewart was at the hospital with Joseph, she collapsed in her closet wtih a load of laundry in her hands. Our children found her there and called Stewart, who called an ambulance, but she could not be saved. She died at 33 years of age. An autopsy was performed but her family never revealed those results to Stewart.

8. After eight months of treatment and several life threatening infections, including many that left his lungs horribly scarred, Joseph achieved remission. I continued my relationship with Joe through all of this, and it became my lifeline of self-care as our world immersed completely in childhood cancer. Joseph was on the hospital the better part of those eight months and we never let him spend a night there alone. He got a trip from Make A Wish and chose to go back to Disney World. It was a magical trip. Our relationship now well seasoned and settled as a divorced couple who have been to hell and back for their child, Stewart and I had fun together and a friendship took shape. Every month Joseph needed blood work to check for relapse. I began to train myself not to be nervous and freaking out every month for this. Joseph returned to school part time, still too tired and affected from the heavy chemotherapy he got to have the stamina for full time classes. Summer arrived. He seemed tired a lot, but we were told this would resolve over the next year to two years. He was active in scouts, went rapelling, camping and on 11 mile bike rides with his troop. Sadly, life kicked us in the gut again, when on July 5th of 2006 his routine monthly blood work showed cancer blasts again in his blood. Bone marrow biopsy the next day revealed 54% cancer. Joseph had relapsed. Life kicked into high gear. Neither Nick nor Alex matched Joseph for a bone marrow transplant, but he had several matches in the bone marrow registry. We prepared for transplant. He underwent chemotherapy to get back into remission, but suffered a horrible setback with intense lung infections and an anal abscess that had to be surgically drained. Just prior to undergoing full body radiation, people donated money and tickets from far and wide to send our family on vacation together. Joseph wanted to go to Sea World in San Antonio, so we took five days and made that trip. It was a magical time. Joseph was debilitated, frail and tired and rode a wheelchair most of the time. We did our best to put cancer out of our heads and to enjoy the time we got together. When we returned, Joseph was admitted to the hospital and began full body radiation, then conditioning high dose chemotherapy to kill his bone marrow (and hopefully his cancer) forever. He recieved donated umbilical cord stem cells, then suffered through six weeks of the horrible side effects of that much chemotherapy and radiation. He was a trooper though, and was approved to leave the hospital again just before Thanksgiving. We had a magical Thanksgiving together, where Joe joined us. Joseph was happy, though very weak. It was the last holiday we would all get together.

9. A few days later he spiked a fever and was admitted for the hospital for IV fluids. This began a downward spiral in his overall health. They could not figure out what was wrong with him. The fevers never went away. He grewer sicker each day, until finally he was laboring to breathe at such a level the doctors felt he would be safer in PICU. He was placed on a ventilator in hopes his lungs would heal if the stress of trying so hard to breathe was taken off of him. He lingered on the ventilator and then an oscillator for four weeks after this. Far and away the most agonizing time of my life. The details of his entire illness were kept in a journal on his Caringbridge page, and this method of support and coping became my sanity. We suffered through Christmas without him, and on January 9th the doctors let us know that there was no longer any hope of survival. Joseph had let us know, when the doctor spoke about making a living will when being prepared for radiation, that if he was ever on a ventilator through this and there was no chance that he would survive, he did not want to linger on in that way. He told us we should turn off the machines and let him go if there was no hope he would ever recover. It was hard to hear at the time. It was harder still to carry out. On January 10, 2007, at approximately 4:52 PM, Stewart and I gathered around Joseph's bedside and talked and sang and stroked him. With his favorite oncologist there and the nurses who had taken such tender care of him, the machines were turned off, treatment discontinued and his life witnessed as it faded away with quiet and blessed dignity. Joseph was pronounced dead at 4:58 PM at the age of 13 after 18 months of battling the cancer demon.

10. And now, here I am. Joe had a rearrangement of priorities, having stuck by me through all this, blessed man that he is. He moved here just five months after Joseph died and bought us a house, where we now live together. Nick and Alex have their own rooms and are growing in affection with Joe every day. Life is calm and smooth. I have returned to school in hopes of earning a nursing degree and in the process completed the Associate's Degree in Liberal Arts that I never finished lo those many years ago. Stewart continues to do medical transcription at home. He has dated a little bit but has no desire to be serious with anyone. Life has just kicked us a bit too hard I am afraid. I remain hopeful one day God will lead him to a good woman who will treat him as he deserves and bring him happiness. Nick and Alex are thriving, exceling in school and in Scouts. Alex plays sports. Nick does volunteer work. I got a new job at the Cooper Clinic in McKinney, Texas, just north of where we are living and am extremely happy there. Joe has found a position that lets him work from home, and is adjusting still to the loneliness of leaving his friends and family behind. I have hopes one day we will marry but I don't think that is in the works any time soon, particularly since his daughter, Katie just became engaged. We are looking forward to helping her with her wedding and doing a little traveling. We just returned from a cruise in February, our first vacation since that one to Myrtle Beach years ago. I have a good group of friends who hold me up through my sorrow and have made many more with other mothers who have suffered a similar loss. I have been encouraged by so many to write and my heart is opening more and more to that idea. I am happy. There is a hole where Joseph will always be, and I hate that it took this kind of line of tragedies to make me realize how blessed my life is. But I do. I am blessed and determined to do some good in the world. I am more spiritual than I used to be and more in touch with the spiritual power of my own being. I have tentatively started reading Tarot on a very casual basis both for my friends and for myself. I don't go to church but I do pray, something I found hard to do both while Joseph was sick and after his death. I am beginning to exercise again and to eat better than I had been. I gained back 40 of the 80 pounds I had lost and am ready to do something about that now. We are planning a memorial garden in the yard for Joseph and I visit his grave whenever the desire to strikes. I miss him every day and I can't wait to see him again. I want to know what he has been up to. I want him to be proud of me.



So those are my ten Meme's. I believe I will tag the following people: Heather, Tahiya, Nessa, Vickie, Sanura and Megan. I can't wait to read about you! Enjoy the journey!

Thursday, June 19, 2008

And Then Came The Dawn

Some of you may not be aware that Joseph's journey through AML was not our family's first brush with childhood cancer. Before Joseph ever fell ill, Alexander was found (at the age of 5) to have a brain tumor. I won't go into all the details, but at the time it seemed like the most horrible thing that ever could happen to anyone. There was a 14 hour surgery, a two week hospital stay (that I thought was going to kill me...two weeks seemed like such a long time then. I didn't know any better) and a near death experience with chemical meningitis from the contents of his tumor spilling into his cranial cavity and irritating the lining of the brain. It was a harrowing ordeal that stole Alex's complete glandular function, as his pituitary gland had been completely engulfed by the tumor and had to be totally removed. He continues to this day to be on five pills in the morning, one during the day, three pills every night and an injection of growth hormone six evenings out of seven. Believe it or not, that's it. He's not only completely normal, he's amazing, making straight As and playing sports, participating in Scouts, going to brain tumor camp with other survivors and in general enjoying his life. He sees a pediatric endocrinologist every four months to monitor his growth and hormone levels and he gets an MRI once a year now to check for regrowth of the tumor.

Alex had his MRI last week and today was the yearly visit with neuro-oncology down at Children's Medical Center to get the results. Its always a nail biting time, but particularly has been since Joseph relapsed. It fell out of the category of "unlikely to happen" and into the category of "possible" in our minds. I don't think we will ever be completely at east about it. But once again this year his scan was completely clear, a dark hole where his tumor and pituitary gland used to be but no signs of tumor regrowth at all. He has hit five years since diagnosis now and in another five years will be considered "cured" and will no longer need MRIs or even follow up with neuro-oncology at all. That is unthinkable to me. It actually is frightening to imagine reaching a place where he doesn't have to see the oncologist, to not have at least yearly reassurance that all is well. But its progress. The chance of his tumor ever coming back goes down tremendously with every year that goes by.

Sadly, Children's decided to combine the neuro-oncology clinic with the blood disorders clinic, and we spent the morning absolutely surrounded by bald headed kiddos who were not feeling well, most of whom have leukemia or lymphoma. It was a real punch to the gut, each and every one of them. And yet I feel so oddly at home there. Part of me was so thankful Joseph is not suffering like them anymore. Part of me would give anything to have him back, even if it meant continuing to nurse him along. That would be the selfish part of me. I wanted to rub all their little bald heads so badly. The ones who weren't feeling particularly poopy today continued to amaze me as always with the way they run, laugh, play and act normal, even with tubes hanging out of their noses and chests and masks over their faces. These kids are just so strong and so resilient. My heart ached for all the exhausted looking parents, several of whom found themselves dosing off as they waited to be called back. Been there. Got that T-shirt.

But even with the sad nostalgia, I have to celebrate today. Alexander is thriving. The list of things that usually go wrong with surgery for his type of tumor is long and daunting. We have a handful of pills a couple of times a day and a world where we have to make room for needle sticks before bedtime. But other than that and a few sports restrictions, we live a normal life. He'll always need his endocrinologist for the rest of his life, but there is an unfamiliar light on the horizon, dim, blinking its hope, beckoning me with a joyfulness that makes me tremble inside. I didn't know that light existed. Its the light of a world without oncologists in it. I have not experienced that in well over five years now and I have forgotten what that kind of a life looks and feels like. It is the rise of a new world, a new day for all of us, faint and far away, but already bathing me in hope and in gratitude.

Wednesday, June 18, 2008

A second post for today. I so often find myself hesitating to come here, editing my thoughts and emotions for fear of what they may communicate about me and what judgements may pass upon my being but also what judgements they may seem to imply to others who read here. I am feeling a little stuck artistically. My inner world has drawn the blinds somewhat and I feel as if much of what I write is the bare outline of the life I am living, reporting the surface factualities that anyone who knows me in my every day sense already knows. Yet it is in the reporting of the subheadings and subtitles and between-the-lines thoughts and emotions that seem to resonate the most with others. I seem to have a bit of spiritual or mental (or maybe artistic) exhibitionism and my inner flamboyant won't be silenced long-term no matter how hard I try. I am a sucker for praise and for feedback.

Increasingly I am changing, like a sculpture that is a work-in-progress mutation. Little chinks that clip off portions to expose some vein of color or line beneath the surface in the artist's eye. I can't see what he is doing but I can feel the oldness of those parts leaving and falling away, that which is underneath raw, fresh and unweathered. Vulnerable. Even painful. I grow increasingly impatient with a world quick to jump on buzz words based on information dispersed through half-reported truths. I am ready to let go of pains and friendships that were not what they seemed when the rubber met the road, one of whom recently resurfaced months after Joseph's death and whose absence was so dramatically hurtful to me during that time. I am in constant evaluation of my own problem solving skills and emotional reactions in my relationships, especially with Joe, which at times reveals me to be stuck in a third-grade mentality when dealing with conflict, and driven to improve myself. I think this shows great growth and acceptance. Of life. Of death. Of where and who I am right in this moment.

I am not enjoying Anatomy and Physiology. I am leaving class each night with a knot in my stomach and heaviness in my heart, the constant evaluation of how the human body works and what happens when it does not work correctly bringing back visions and feelings from watching my child die. It is a painful and acute side effect of this path that I had not counted on nor anticipated. It is heavy and I find myself dreading going to the class. I have recently found (and not without some harsh but needed encouragement) that I cannot cushion my goals for the future within reference to Joseph's death. I can't "do it for Joseph". Not if I expect to honestly move emotionally forward. I have been dragging him with me like a security blanket, and like most of those, it is a ratty, dirty, somewhat ugly thing I have made of it, yet I cling on. The real recovery and growth comes in learning to again do for me, for my life and the betterment of the lives of those still here to be affected by my actions and goals. And I am slowly, painfully learning that in trying to do everything here forward in Joseph's name (get in shape, eat right, become a nurse, etc) brings a degree of mourning with it and a sadness that actually can keep me from moving forward in emotional truth. Like changing the wallpaper on my computer. The computer the same, only the image upon it varying. This may be difficult to put into words. I want to do things with his memory in me always, but not necessarily because of what happened to him. I am beginning, given the degree of pain and sense of sliding backward and cultivating grief and negative images, anger, depression, guilt, that perhaps this entire avenue of becoming a nurse was born to avoid the direct pain of his passing. That I chose this in honor of him yes, but now find the need it fulfilled has passed. I do not know. I am not exactly known by those who are close to me as being a girl who stays in things for the long haul, and I truly do not want to stop attempting this simply because it is difficult. At the same time, if it has become something that holds me in the past and inside a lot of pain, I do not want to hold to it in zealous stubbornness simply because it seemed like a good idea at the time and make not just me but everyone around me miserable. Joe and I have plans to talk when life gives enough of a break for us to do so, and I look forward to that conversation. I am a little bit afraid. This has been a life preserver for me, keeping me going when I didn't know what else I wanted or what else life could provide. No matter what I could pursue nursing. And I still might. But I want to be in it for the right reasons and I want to not be suffering tremendously in the pursuit of it, but rather, chasing a dream. Right now, I am not as sure of the dream. There are other voices calling to me, literary and artistic voices.

I'll update more as things become more clear to me. I feel jumbled, confused, frightened inside. All I know is in the down time between semesters, I started to take better care of myself. I looked forward to my evenings at home and time with my kids. I started taking better care of the house. And I made some big changes that were long overdue. I felt good by the time those few weeks off were over and the new term started.

Even writing all of this down produces anxiety in me and makes me feel like I look like a flake. What do I want and how do I go about getting it?

A perfect day

Yesterday was the most perfect day I can remember in years. The kind of day that you wish you could relive over and over again, but even if you tried to recreate it you could never have enough variables fall into place in exactly the same way.

I had told the boys back in January if both of them got nothing lower than a B on their report cards for the second semester I would take them to Six Flags in the summer time. So I took the day off yesterday, purchased tickets and off we went. There was a chance of rain, so I was a little trepidatious, but it wasn't supposed to be quite as hot as it has been, so I figured if it rained we could wait it out in a gift shop or restaurant. But it didn't rain, not really. A big storm threatened early in our outing, but blew over before it opened up. But it was enough to scare off other people in the area from coming to the park and to send some of who were already there running for home. It also cooled temperatures and gave a very cool breeze, to the point that the water rides no longer sounded appealing (well, to me. Nick and Alex still got themselves joyfully soaked). In all, we wound up with a most overcast, somewhat cooler day at Six Flags with relatively easy crowds. Perfection. The boys got to ride most of the things they wanted to two to three times. Nobody got sunburned or heat sick. We didn't spend more time in line than we did on the rides. It was a joy for me when they asked if they could ride something again to just smile and say "Sure! Go!" and watch them take off running to get back on the ride. Several times they were ahead of me on something and I would stare at Nick's thick red curls, Alexander's soft strawberry hair and remember the sweet curve of their skulls as toddlers. I took mental pictures left and right, trying to capture the day, the moments, the laughter. How I wish I could keep them just a little longer with me. I mentioned that on the way home in the car, after Alex fell asleep and Nick and I were having one of those talks in which it hits me that he is not far from adulthood. I wished aloud that I could keep them just the ages they are now, not because I don't want them to grow up, but because I love having them as my children and that I am going to miss them. He just smiled and said "Let's not dwell on that now. Its been a great day. We have to live in today. You taught me that Mom." Huh. Guess he does listen to me, enough to toss my own wisdom back in my lap when I need it. I just can't believe how perfectly the day went. It could not have been better, and being able to tell them that they made the day happen because of all their hard work in school was a joy. I love to be able to reward them. I am so thankful for my boys.

Sunday, June 15, 2008

Happy Father's Day

This is such a special day. I love men. I love the way their hands look when they are holding babies and the way they can fall so easily into the minds and playfulness of children. The rough way they love. How children can stumble from their hands looking like happy, rumpled kittens.

My own father died three years ago, but I think he was well aware of my esteem for him by the time of his death. Joe and Stewart are both tremendously good fathers. So much so that I feel my kids are just doubly blessed. Stewart has the handle on art, music, involvement, laughter. Joe teaches them stuff, shows them how to fix things, shows them about sports and grilling food. I feel doubly blessed. Is there any feeling on earth better for a mother than seeing her children thrive? And Nick and Alex are. They really, really are now.

I am up early and savoring the morning. Alex and I made a cake from scratch yesterday. The recipe is supposedly Princess Diana's birthday cake from her childhood. Its a light sponge cake cut into four layers, slathered in strawberry and a whipped cream based frosting. Its in the refridgerator. I've never made a layer cake before. It leans a little bit and Joe teased me about it last night, made me giggle, then felt bad and told me how wonderful it looks. We'll have it this evening with dinner. He's smoking a LOT of stuff in his new smoker today....two kinds of ribs and two whole chickens. Nobody is starving in this house. Stewart's coming to eat with us. The boys and I are taking Stewart out to brunch this morning. Joe's watching the US Open this weekend, so its a kind of father's day gift to give him a little peace and quiet to do that. We went shopping for presents for both of them last night, but the real present is in the cards the boys selected. They not only picked really sweet cards, but I told them not to just sign their names, but to write a little something in there. It could be something very simple or more elaborate, a memory, a thank you, but to say something that would make the card meaningful. They blew me away completely with what they wrote. If they did that to/for me, I would be sobbing. I am really excited about what I got for Joe. His kids are pretty involved in their own lives these days but he usually gets a phone call from them, which makes his day completely.

We had our first tomato out of the garden yesterday and more are turning red. They taste far better than the ones from the store and no salmonella to boot! I hope we get a huge crop this year and I can share them with my mom and brothers. We all miss the quality of the produce from the garden we had when living in Nebraska.

Friday, June 13, 2008

I do not know how to communicate what has been going on in my head and heart over the last week. I am composing in my head constantly now, words that move me, send me soaring, but by the time I get to the computer fatigue has taken over and there is nothing left to write. It is as if I don't get it down at the moment of inspiration, it gets put out into the universe as energy rather than words.

So much is happening.

I returned to school Monday night. A&P I. This is going to be a rough class for me, I can tell already. There is so much information, though that is not really the biggest problem. The teacher announced if you do not make an A in A&P that the nursing schools will not even consider your application. That it gets thrown away. And he let us know he expects many of us to drop. Not exactly a positive spin on things. During lab so far he merely sits behind his desk and leaves us to work things out as a group for whatever we are doing, with no instructions at all. That would be fine if I were in the group next to me, who is boisterous, enthusiastic and knowledgable. In my group, three of the five of us just get up and leave stating they can do all that at home by themselves. It is frustrating and it is intimidating. Right now we are reviewing basic biochemistry and cellular biology. Not my strongest subjects. My brain just scrambles and I have to think very very hard to concentrate. The few things we are beginning to touch on with cellular mutations and contribution to disease just get my heart racing so hard. The tears come, the images in my head that I can only compare to what a flashback must be like and I am so aware of Joseph and all that went wrong in his body. It makes it hard to concentrate, hard to study and truly begins to make me question if this is the right path for me at this time. The time I had between semesters I felt so much more balanced and content inside myself. But I cannot tell if this is just me trying to avoid something that is difficult or if this is my brain trying to tell me to slow down.

Working out and eating better is going quite well. I am not dieting or limiting any foods, but I am eating less, eating better and exercising more. I am thrilled and gratified that this week marked a 10 pound weight loss in just four weeks, with what has felt like little to no deprivation and a very good quality of life. Going to the gym is becoming a habit. My clothes are fitting better and are far less tight on me. I can feel a difference in my muscles. It helps my moods a lot to be doing this.

I have so much more I want to say, but need to hit one of those creative pockets in order to say it correctly. Hopefully I will have time this weekend to get my soul exposed again.

Monday, June 9, 2008

This was really a terrific weekend. I had the boys on Friday night. Alex brought me his report card and he made straight As. His lowest grade was a 93. Can I get a wootwoot?! I am so proud of him. Nick made all As and Bs, which is also awesome. He finished the school year off so strong after struggling so much in the fall. Life is settling down for them and I am glad for it. They both seem to be happy these days and that does a mother's heart good. I feel so lucky in Nick. He isn't terribly motivated, but he never hesitates to help out when asked and I never. ever. get sassy lip from him or attitude. We just don't have any of the teenaged drama that other people seem to get and I am knocking on wood that it stays that way. What Alex will be like at that age, I do not know. We are so close now I kind of expect he will pull away hard. We'll see.

The boys went back to thier Dad's on Saturday morning and Joe and I pretty much spent the day playing. We have been going to the gym together on Saturday mornings and we did that again this week. I love doing that. We have really been coming together in terms of health issues, working on our fitness levels and trying to eat better. There is a solidarity there that warms me and gives me energy. Half of why I can carry through with it now is knowing that my motivation fuels his as well. Its very symbiotic and intimate. We've been close and we've been happy. Happier than I remember being for a long time. We showered up at the gym and then he took me to The Cheesecake Factory for lunch, where we split a plate of blackened mahi mahi and steamed broccoli (and french fries, which we also split and I have to admit I enjoyed thoroughly). Then we went to Ikea and wandered through there and made some neat purchases, came back home, rented a movie and enjoyed one another's company. It was a fun day. He grilled chicken for us for dinner and I made us a salad and parmesan noodles. I am down nine pounds now and though I am not focusing on weight loss as much as on letting myself enjoy my life and recognizing what behaviors and eating habits let me do that, the loss is nice. I don't feel as much like I am straining my own skin and I hope the downward trend continues. My official weigh-ins are on Wednesday mornings.

I start A&P tonight. I am very nervous inside and excited. I think I will enjoy this class. I am stressing over wanting to get there early enough to stake a claim on a front row seat. Class is Mondays and Wednesdays from 6-11 PM. As Joe says, I am usually pretty much done for the day and asleep around 10, so this will be interesting. I will have to adapt. Class runs from now until Aug 14th. I spent a little time this weekend reading and studying the first chapter.

Wednesday, June 4, 2008

Chop Chop

I saw the movie on Sunday and fell in love with the haircut. I give you me, as "Miranda"

Before:



After:

Monday, June 2, 2008

The Gap by Michael Crenlinsten

The Gap
by Michael Crenlinsten

The gap between those who have lost children and those who have not is
profoundly difficult to bridge. No one, whose children are well and intact can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain – a life sentence.

Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial add a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap – those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours.

We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience – and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer painful to be normal. We do not know who we will be at that point or who will still be with us.

We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them.

This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.


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I both like this essay and fear it. It speaks a lot of truth. Absolutely everything that is said is there. But I am at a place in my own journey where I feel it is important that I focus on and recognize that its not every single minute. Its not every single day. I have good moments. I have good times. I have moments when I think of Joe-Gi and I laugh. Moments when I feel him so close to me. I am learning how to carry him with me. But its been a hard and resentful journey to get here. Everything in my screams to leave me alone and let me have my grief. Let me hold it, pet it, nurture it. Let me resist the world and its callous insistence that it continue to move onward.

I have been full of anger, fury and rage at the idea that I should keep going. But when does it stop? At what point will someone look at me and say "enough" and that being said somehow be okay with me? Never! It would never be okay with me. Yet it does need to be said. Not in the sense of "Enough missing him! Enough sorrow for him!" but more in the sense of "Enough using this loss as an excuse to give up on life! Enough thinking this is a good enough reason to let yourself, your life, your dreams, your other children and other loves go!" I have two other children. I have a mother who loves me, an ex husband who thinks the world of me, a current lover whose life was uprooted in order to build a new one with me. I have dreams and goals and I am going to be here for God knows how many long years still. Even if I myself am willing to live in misery, those around me should not have to live in the misery of watching my sorrow sap me of who I am. I am better than that. And dammit, I am sick of having to be sometimes, but it doesn't change it at all. And if my grief were to rob me of those who love me to the point that they leave me in solitude then I would feel like a fool too late. I cannot get my Joseph back, not in the sense of having him here to live out his life, son to mother. I can trust more the feeling of closeness I have to his spirit and resent less that its not his physical body. I can carry him forward with me rather than sitting here refusing to budge. So the above essay is true. Very true. But what it also does not address is, having suffered such a monumental loss, that we possess within us the strength and tenacity to bear ourselves onward in recognition of the gift that our other friends and family are in our lives. One waste does not need to equate to a lifetime of wastefulness. I can't afford to waste any more time. I have been wallowing a lot. Feeling sorry for myself. Grieving with food and unhealthy habits. And I am tired of myself. This isn't me or what I am worthy of. It isn't what life and God and circumstances have revealed of myself to me. I am better than this. I am ready to take up this fight.

Those who counsel parents on the loss of a child talk a lot about "grief work". The "hard work of grieving" that must be done or one is ever stuck in the same place with no light. I never really knew what that meant. I think I understand now. Because it is work to move forward. No magic wand is going to wave over my head and suddenly make me feel good about or okay with Joseph's death and give me a burst of energy to pursue other thoughts, interests, activities, goals. To pursue joy. I have to choose to do that. And then work through the emotional avalanche that comes with that choice.

Sunday, June 1, 2008











Blogging has gotten pretty slow for me in the last week. Its been an intense one and I have written more in my head than I have here. It's been a rocky week. I don't want to go into great detail here, but suffice to say that some things are going to have to change in my mentality and how I am handling my life. I don't know yet all the ways that will manifest itself, but one thing is for certain. I have committed to certain things, such as doing well in school and getting healthy again, and those commitments are going to have to take a front seat rather than coming secondary to my grief and wallowing. I have been doing quite well in regards to eating more sensibly and actually making myself go to the gym and move my body. I went three times last week, four times this week and have penciled myself in for five next week. It feels good to do it and helps a lot with my mood swings and feelings of hopelessness. Joe and I had some go-arounds this week and I managed not to turn into a freaky bitch during all that, so I think there is progress being made. I have lost officially five pounds so far as of last Wednesday. My goal is more to be consistent right now than anything. To be mindful, of how I feel, of what I eat, of how the two are trying to affect one another. I have been eating like a girl again and I like that. I have done hard core low carbing (South Beach style) in the past but right now I am not going to forbid myself any particular food, just watch portions. So I have still been eating some yummy stuff and enjoying cooking a lot. Joe made me salmon on the grill the other night that just plain curled my toes it was so good. Last night he grilled us teriyaki chicken breasts and I made us bow tie pasta with olive oil, garlic, halved grape tomatoes and then tossed with fresh basil and parsley from our herb garden, served room temp. That was darn near orgasmic and a perfect summer side dish. I ate about 3/4 of my chicken, one portion of the pasta and we had spinach salad, also tossed with fresh herbs. I stopped eating just past not feeling hungry anymore, which is kind of my goal, to not let myself get stuffed full. I can make it a game in my head when I have my groove on (and the more I do it the easier that groove comes). I remind myself I will get to eat again today and can do so within a couple of hours if need be, so no need to stuff myself. Then I do let myself grab a snack when I need it. But I find more often than not its at least four hours before I feel hungry again. I am always amazed at the increase in leftovers and how much more time I have to get things done around the house, how much more energy. I got a lot done yesterday. Gym, floors, kitchen, Alexander's baseball game, a little trip to the store, laundry, a little cooking, the kids' bedding, even took a leisurely walk around the neighborhood after dinner, then watched a movie with Joe before bedtime. I slept great too. Its almost as if I create more hours in the day. Today I am headed outside to trim up the landscaping in front of the house and I need to get the bathrooms cleaned. Mom invited me to go see the new Sex in the City movie and I am having conundrums whether to eat movie popcorn, which is my favorite food on the planet. Maybe I will see if she will share a small one with me. I don't want to tell myself I can't have it at all, but I also don't need fistful upon fistful of it. The greatest pleasure is usually in those first few bites. I posted pictures from the cemetery on Joseph's birthday, and then some of the garden, which Joe has absolutely rocked the world on this year. It looks terrific. The tomato plants are just heavy with fruit, as are the peppers. I am adoring the herb garden, which is really starting to take off. Soon we will have all the herbs we want. We really missed the fresh basil over the winter. Now we have cilantro, basil (three plants), Italian parsley, chives (LOTS), oregano and rosemary. We are trying to get sage and some other stuff going, but are doing it by seeds and that, of course, takes time. They are coming up but are very small and its not clear yet how they will do. Maybe in time for fall? Joe also has the yard starting to look just luscious and green. The lawn was just a disaster when we moved in, as was the landscaping, and we just went ahead and killed off half the yard completely. He has been coaxing grass in and its going to be gorgeous once the bald patches have filled in. I love our home.
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