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!

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