|
Updates |
|
Updates. Sunday, October 2, 2005 The fourth and fifth months, May 23 to July 23, were the hardest, most hideous period of my life. Since Richard died on February 23, I seem to measure time periods between the 23rd of one month and the 23rd of the next. Medication not withstanding, I fought against drowning in the rip tides of depression. I simply couldn't post my journal at that point - it was just too "down". The frantic-ness of life settled down. The future, each day without him, is my stark reality. The stress and pressure of living where "the buck stops" is incredible. Like an asthma attack, I often feel like I can't get a good, deep breath. Being the ultimately responsible being in this household weighs me down. I'm it. All decisions are made at this desk: from how/when to discipline, repair it or replace it, or simply what to cook - all mine now. With no one to hand off to, I'm constantly "on". I'd gladly share the glory if there was just someone else to shoulder the burden occasionally. I pray constantly that I'm doing this right. I'd forgotten just how often I turned to Richard daily for advice, as a sounding board, or simply to let off steam. I desperately miss the partnership. I live for the future when the girls get older, when the physical aspect of parenting easing up. At 17 months and 4.5 years, the girls are exhilarating and, at the same time, exhausting. I can't yet tell them to get in the car, get themselves something to eat/drink, or go brush their teeth, take a shower, or get ready for bed. But, someday, I will. We made another trip to California in June to meet friends in the San Diego area. Just finishing business in Los Angeles, my friend Kelly Kilby gave up weekend time with her family to come down and see/help us for the weekend. It was great and oh-so-comfortable to hang with lifelong friends: Greg and Valerie (Quijada) Mowery, Richard and Carin (Weesner) Barnes, Roger and Greta (Cook) Brown, Lew and Karen (Bird) Mowery, Duane Baldwin, Kent Chow, Myron Mariano, and Evan Allen (who came in for the day but had to fly back to his girlfriend; Oh, Ev, Richard would have had so much to say about her being 19!). Looking at all their older kids (ages 7-14), I have hope for a less physically rigorous life. I hope my girls will also know the joy of having friends that they have known since second grade. Having journeyed together from grade school through graduate school, being together again with these friends was like wearing a well broken in shoe, it felt good, familiar, and comfortable. While there, I ventured out with my little girls to the San Diego Wild Animal Park and Legoland - just the three of us. I kept my promise to Lauren that we would go. In the car heading out there both days, I felt so sorry for myself. Pity party time. Looking around at sets of mom-dad-kids, mom-dad-kids, mom-dad-kids was tough. Emotionally drained and physically exhausted at the end of each day, still, I was so proud of myself. Looking back, I hope these are the memories my daughters have of this time period. I hope it's of the times we sit on my bed eating goldfish crackers and giggling, of the times the three of us march into the shower and cook pretend meals in Sesame Street pans; not the times when mommy is yelling like a shrew for no apparent reason. Tears filling her eyes, Lauren has pulled me up short, more than once, with a soft, "You don't have to yell at me, Mommy." After Legoland, I drove the 90 minutes out to my parents' home and waited for their return from a European Cruise. The girls enjoyed visiting with the grandparents. Zeta finished a course of antibiotics just before we traveled to California. The day we were scheduled to fly home, she developed another ear infection, this time on the right side. Bless Cathy (Tan) Herrick for making the time to see us and calling in a prescription. After two weeks of being away from home and being with the girls 24/7 (except for the 4 hours that I snuck away for a manicure, pedicure, and massage - thank you Kelly, Valerie, and Carin for babysitting!), I was determined to go home. After getting assurances from Cathy, the Pediatrician, I loaded "Z" up with pain meds and took off. I'm still recovering. I doubt we will be going to California again for a while. Physically, it's just too taxing. Thankfully, the corporation, OAG, again went over and beyond and took care of three months' health insurance premiums giving me time to get my feet under me. In August, I finally hunted down a new health insurance policy for the three of us. One company denied us coverage outright and sent me into a major panic that we were uninsurable. The girls' asthma raised red flags. My current prescription for anti-depressants also blipped on their radar. They wanted "medical records and a statement from your doctor regarding your mental/emotional state". My 40-year old husband died seven months ago, five weeks and one day after we got a diagnosis - What do they expect!?!? The rumors swirling around need to be put to rest. Richard never had human growth hormone. For those who circulated that rumor, did they stop to wonder why he stood only 5 foot, 6 inches? Case Western, the Prion Disease Surveillance Center, completed their study of Richard's brain in late May. They confirmed that he had Sporadic Creutzfeldt-Jakob disease. It was not the variant, and, thus, did not come from any food source, beef or otherwise. Like any other rotten disease, it just happened. I can accept that. I just wish all the conspiracy theorists out there who have contacted me could as well. The incredibly rude and insensitive Oregonian health reporter who first(!) contacted me 16 hours after Richard died has not yet been forgiven. The report also indicated that his DNA analysis did not show the mutation that 15% of the cases do, and, thus, it was not familial; i.e. hereditary. That news lifted a huge fear. Our daughters dodged that bullet. I chose to run the DNA test while we were at UC San Francisco. Had this been positive, I still could not have had the girls tested until they turned 18 and could consent to the test themselves. Those with the mutation are 100% in line for having the disease. It's just a time bomb waiting to explode. Choosing whether or not to live with that knowledge is something they would have had to decide for themselves. I'm just enormously thankful that it's something I no longer have to worry about. I've got the sheer volume of daily mail we receive down to less than half of what used to crowd our mailbox. I spent an entire afternoon contacting companies requesting that they discontinue his subscriptions and asking that we be taken off catalog mailing lists. Cabela's lost a good customer. A couple of times a week something still trickles through, and I try to immediately notify them before feeding the recycling bin. Rich, truly, I'm really trying to eliminate the clutter in this house. I know it would have bugged him. He took 8-10 weeks of vacation each year. Since the girls came along, we've spent the majority of his time off in or around Portland. Lauren enjoyed having Daddy along to experience her daily life, e.g. play dates to the zoo, trips to the grocery store, cruising to Home Depot in "Daddy's car without the roof" (his convertible) (she refuses to go to there now.) Faithfully, he always devoted one day of his vacation to my messes. After turning the girls' over to a sitter, Richard sat in my office, at the kitchen desk, or where ever I'd begun to initiate the "file by pile" system and ask, "Do we really need this?" or "Where does this go?" The week he took off after Zeta's birth, he organized my pantry, the shelves and cupboards in the laundry room, and the garage storage space just outside the kitchen door. No amount of protesting from this c-section victim got me out of that task. May our daughters have inherited their Daddy's neatness, sense of order, and preciseness! As of the second week of July, the big bad life insurance company finally had all the information it needed. Wouldn't you know it? The last missing record they were waiting for was from Portland Adventist - Richard's own hospital! If I had only known, I would have been camping out in medical records. Richard left everything financial up to me and my father, the financial planner. "Just tell me where to sign", he'd say. He ignored my pleas to at least learn to log on to Quicken. He wasn't interested. The Lord knew that insurance policy was the last piece in the puzzle needed to take care of the girls' education, allow us to stay in the only house our girls remember, and allow me to be at home with our daughters full time. We trusted in Him. Finally, the middle of August, they paid the claim. Richard listened better than I ever did. I need him to listen patiently and then break it all down to the core issues. I miss his succinct, often humorous, analysis. Except for the clipped answering machine greeting, that I refuse to erase, never again in this world will I hear Richard's voice. I can't stand the thought. Thank goodness we spent all those years talking. I'd have given up more sleep to talk if I'd known our time was to be so short. A couple of weeks ago, I found myself back in my bad habit of stomping around and impatiently hurrying the girls along to get to Sabbath School on time. I stopped short when I suddenly remembered Richard looking me straight in the eye and saying, "Charlene, calm down. Why do you always have to make Sabbath so unpleasant?" My huffing and puffing abruptly ceased. Yet, again, he held a mirror up to my face and forced me to look at myself. If I put stuff together the night before, got out of bed earlier, and quit allowing myself to get distracted from the task at hand, we could get to church on time and the girls wouldn't always associate Sabbath with a grumpy, fire-breathing dragon mother. I need you back at my side, Rich. I'm just half of the whole without you. Each month when the full moon rises, I remember Richard chastising me for lowering the bedroom blinds each night. He thought it would be so cool to lie in bed and look out over the valley lit up bright as day. I, the sleep lover, couldn't stand the thought of being woken up at dawn. If I'd had a crystal ball, I'd have left the blinds on all 10 windows up and savored every minute of it with him. I'm comforted by the fact that we lived life to its fullest during our 4+ years of dating, the 8 years of marriage before kids, and the 4 years as a family with mini-me's. The greedy part of me just wants more. It's hard to break old habits. Doing laundry the other day, I brainlessly ran my normal circuit picking up bath towels, hand towels and popping into the shower to pick up Richard's washcloth only to be stopped short when it wasn't there. Picking up the soap in the shower the other day, it hit me that I hadn't replaced the soap in forever. It makes perfect sense that with only one user, it lasts longer. As I reach for the girls' toothbrushes and floss each night, I see his cologne bottle sitting there. Most nights, I indulge in a big sniff remembering that scent vividly, all the way back to college days. He bought other things from time-to-time, but I always protested. I have to deal with household things I never bothered with before. Luckily for me, he had everything so well organized. There's a box of neatly wound extension cords, a shelf devoted to 11 kinds of glue, a drawer of various tape, a cabinet stocked with car care products. Little reminders of him lurk around every corner. Many ask how the girls are doing. At 15 months, Zeta achieved the 50% mark for height but weighs in at less than 5% in the charts. Considering her sister fell off those same charts at 9 months and never climbed back on until 3 years, it's pretty amazing. I always paged Richard as I left of Pediatrician's office to assure him that the girls were "well babies". I miss being able to do that. Z is signing a bit, speaks some, but truly excels in her motor skills. She's into, on top of, under and through everything. She learns by watching. I swear Lauren wasn't able to get her own pair of jeans on by this point. Lauren's pre-school teacher once told me that she had a great skill in expressing what she was thinking/feeling. On the way to church one morning, she told me that she thought that Jesus was "just pretend" (aka Santa Claus and the Easter Bunny). Naturally, I asked her why. "Because he promised to come get me and take me to heaven and I've been waiting 40 thousand hundred years," was her reply. With tears in my eyes and a lump in my throat, I tried to enumerate the many times that Jesus has met his promises to take care of us in these last seven months and attempted to assure her that he was still planning to keep his promise. Lauren spends most nights in my bed. Rich and I swore against the "family bed" concept which resulted in both girls being unable to sleep anywhere but their cribs. The week between Richard's death and the funeral, Lauren asked to sleep with me, and I consented. Now, I don't know which of us counts on the nightly company more. Lauren is my little buddy. We watch FoodTV together. We read. Sometimes, in the dark, I just hold her hand and listen to her even breaths. She's had a few nightmares and mumbles "Daddy". Being right there, I can cuddle her and assure her that both Mommy and Daddy love her. I overheard her plastic phone conversation with someone the other day. I asked her who she was talking to. "Daddy," she informed me, "and he said to tell you he loves you." She talks about him the most when she's tired, sick, or unhappy. During allergy season, she often gets meds at bedtime. Otherwise, the drainage builds up, she coughs, and throws up. Early one morning, I recognized that familiar cough, scooped her up and raced to the bathroom. Holding her as she threw up, I guiltily confessed that I had forgotten to give her the meds. "If Daddy were here, he wouldn't have forgotten," she accused. She's right. When there's a Mommy and a Daddy fewer things fall between the cracks. Mark Calkins brought Rich's Anesthesia cart to us late one night. I plan to wrap it in plastic, preserving it exactly as is (precisely organized and covered in the girls' pictures). While Mark drove it to the storage area, Lauren and I walked down to meet him. She slipped her little hand into mine, tears running down her cheeks, she knew exactly what was happening. "I miss, Daddy" she cried. Proudly displayed in the family room, there is a picture of Rich and I taken at a wedding last September. The couple, Tammy & Greg HeCrow, framed it and brought it over when Rich was sick. Sometimes, it disappears from its prominent spot. Other times, Lauren's framed baby pictures appear from other parts of the house, surrounding it. Lauren reminisced about roasting marshmallows over our fire pit with Daddy. She can't understand why I don't tackle the task of recreating this for her. She also talks about playing Nurf guns with her father. Richard, the NRA member, wanted to be sure that Lauren didn't get influenced by the surrounding liberal Oregonians into thinking that "guns were bad." People can be bad. People can make bad choices. Guns themselves are not, I can hear him say. The other day, Lauren asked if she would have to wait until we went to heaven to see Daddy to roast marshmallows and play with Nurf guns. She went on to say, "Can't you just marry me a new Daddy, Mom?" The girls and I are establishing new routines. I introduced Lauren to the video rental store. Until now, I'd never rented a movie just for me. Now, Lauren and I visit routinely, each renting something fun to get through the evening. Ever alert, Lauren has pegged my taste. With her selections in hand, Lauren says to Z, "Let's go find something with a bride on it for Mommy." Surprisingly, I still go for the romantic comedies. For some odd reason, I find it soothing to watch the camaraderie, the affection, the companionship on screen. It's better to have loved and lost than never to have loved at all. In June, the one year anniversary of President Reagan's death, I read an article by Pattie Davis, Ronald and Nancy Reagan's daughter. I recognized many of the thoughts and emotions that she related about her mother's first year of widowhood. In the piece, she said that a grieving person could either choose to run away from memories or, like her mother, run directly into them. I run full speed towards them. It's enormously comforting to do the things we've always done. Eating out, I order things he would have ordered. For my birthday, Minou, Sharon, and Amy took me to El Gaucho, Richard's hands-down favorite restaurant in town. It was so comfortable, like a comfy pair of sweats that you relax in after a day of being beaten up out in the cruel world. As I write this paragraph, we're in Whistler, Canada. A place we vacationed last summer and also in 2002. I love to remind Lauren of things we did, pass along comments her father made as we strolled the streets. So far, there are only two exceptions to the "walking into the memories" rule. In June, we returned to my sister's home for the first time since January when we got the diagnosis. Just like before, I drove (Richard was no longer able) arriving on a Saturday night. I was unprepared for the wave of memories and emotions as I entered the house. Clearly in my mind's eye, I saw Richard sitting on the couch, a look of confusion and defeat on his face. We had spent weeks trying to identify the source of his insomnia, double vision, lack of coordination, and speech issues. A zillion tests had been run. His symptoms just kept deteriorating. We had no answers. Three days later, I returned to the house (Richard was still in the hospital), a walking zombie, shocked by the news that he was terminal and time was short. Two days after that, on January 20, while Richard sat in front of the news carrying images of the Presidential Inauguration, I, alone, packed and loaded the car and prepared to take my life companion home to die. Normally, my avid political watcher would have been glued to the press coverage. Yet, I remember being horrified as I watched him fixate instead on turning the pages of my pre-school niece's book, performing the zip, tie, button, and snap functions over and over again. The dementia had begun. All these memories flooded over me and tears ran uncontrollably down my face as I stood in my sister's house once more. For the next period (who knows how long!?!), it's going to take great courage to visit my sister and bring Lauren to visit her beloved cousins. The other exception to my embracing memories is hospitals. Adventist Medical Center, where Richard practiced, still feels like home. Less than 24 hours after he died, some force field pulled me down there. I needed to be there. I stood in the area just outside the operating rooms, feeling as comfortable and familiar as in my own home. Here was the place that Richard spent the vast majority of his waking hours. Here, I brought the girls to visit. Here, I was surrounded by the people that I heard about daily and the smells, sights, and sounds that Richard lived for. A spontaneous circle of loving co-workers formed around me. We hugged, cried, and assured each other that we loved him, missed him and would always remember him. I will never forget the comfort that sharing the sadness brought me that day. I went home physically exhausted from the experience but just a notch less wound up. However, I discovered, this feeling does not apply to any other hospital. While in California in June, I went to visit one of my family's best friends, Judy O'Conner. I waltzed in, completely unprepared for the immediate and overwhelming sick feeling that swamped me. My hands turned cold and sweaty, and I became immediately lightheaded. We spent so much time at the University of Washington and UC San Francisco. Hospitals are bad news. Lauren's severe asthma attack in May had the pediatrician thinking out loud about admitting her. Listening to him, I actually fought the desire to throw up. Luckily, a few doses of oral steroids brought everything under control. I'm sure that some people assume that we have fallen off the face of the earth. People say to me, "Give us a call if you want to do something." They don't want to intrude, but they don't understand that I'm often unable to reach out. It's not that I don't want to do things, I desperately do. I just can't initiate the contact. Weekends/evenings, everyone's family time, are especially difficult. Each of our days feels just like every other. Activities give us something to look forward to. Even if I had to re-schedule Zeta's nap to give myself adequate time to bathe them before going, and upon returning home, I had to run upstairs to prepare each bed, then run back down and carry each sleeping girl up to her bed, it was worth it on July 4. Chuck and Denise Cook kindly continued to include us in their annual bash and with some planning, the three of us were able to enjoy all the activities until the very end. Our loving labor & delivery staff presented three handmade quilts to us. The girls' quilts each display fabrics depicting Richard's passions - hunting, diving, flying and motorcycles. In the center, they screened pictures of him with each daughter. Zeta's show him proudly displaying her in the c-section room moments after birth and him expertly giving her her first bath. Lauren's quilt depicts her first fishing experience with him and the two of them with his 40th birthday cake last year. Her great-grandma gave her money to buy anything she wanted. She asked me to take her to buy Daddy a cake. As we were in California at the time, I drove her to the bakery that made our wedding cake. She explained what she wanted, and they patiently detailed all the cakes in the case even providing her with a sample or two. I derive such comfort from Richard's patients and from his co-workers. A church member e-mailed me about how competent and comforting Richard was to her in December just prior to her surgery. Another woman arrived at the hospital specifically asking for him to be her Anesthesiologist again and burst into tears when they told her he had died. Others have told me how competent and reassuring he was. One former co-worker wrote about how much fun he made her day. She recalled him singing the "diarrhea song". I know how seriously he took his responsibilities and the pride he took in his work. It's a soft pillow absorbing a widow's tears to hear that his efforts were appreciated. Some apologize for not writing/calling before now. I don't think I will ever tire of, or appreciate less, having these kind people take the time to tell me or pass along the comments. Each is another tile in the colorful mosaic that I'm crafting for our daughters as to who their father was. Two months after Lauren was born, Richard bought a Honda S2000. A convertible, 2-seater, sporty transport. Great family car - not. A reaction to becoming a father - probably. It was so Richard. Nothing flashy, not exceedingly pricy, no fancy interior options, just a reliable Honda product that flew like the wind. But, he assured me, it could out perform the Boxter and others in that class. He loved that car. Not a scratch or nick on it. He dusted it before and after he drove it. Four years old, it has a mere 9300 miles on it. It never left the garage if a rain cloud hung anywhere in the state (we live in Oregon, remember!). He had a long wish list of upgrades planned for his baby and had found a friend and kindred spirit in Morgan Peetz, the Acura Service Director, that was going to perform the surgeries. It made no sense for me to keep the car. I can't transport the girls in it. My manual transmission driving skills are weak to none. I don't need to pay insurance on a third car that I never drive. But, it was heart-wrenching to think of parting with Rich's precious treasure. In July, when I finally worked up the courage to sell it, I called Morgan. Since Richard's death, Morgan has had my mommy car cleaned and detailed, worked on our cars at his home, and come to our garage and picked up/dropped off our cars for maintenance/repair work at the dealership. He was my first choice to adopt Richard's baby. Still, I couldn't watch when he picked up the car. I practically threw the keys at him and retreated back into the house. I shed a few tears with my friend, Linda (Murdoch) Carr who was visiting. But, I saved the gut wrenching sobs and howls, standing in the empty garage over the red laser dot, for later than evening when the girls were in bed. No hanging tennis balls for Richard. No, sir. Richard precisely installed laser dots over each of our three cars marking the exact parking spot that would allow hatches to be opened, doors ajar, food from the garage refrigerators to be accessed, etc. without hitting or damaging any item or other car in the garage. Standing over the red laser dot meant for the convertible, I lost it. Lots of important days are coming up in the next three months. October 22 would have been Richard's 41st birthday. The flowers at church that day will be dedicated to his memory, in thankfulness to God for his life, and to his parents who gave him life. More than my birthday, or even Christmas, I dread our upcoming wedding anniversary, October 11. Since he started private practice, he always took a week off for my birthday and our anniversary. My parents are making a special trip to hold my hand through that day. Thanksgiving, Lauren's birthday, and Christmas follow quickly after. I'm committed to remembering the good, celebrating the gift of the years we had and praying desperately not to let the thoughts of my current loneliness and wishful ness for the future I had dreamed of overcome me. While he's been physically dead more than 7 months now, in reality, my partner has been missing for much longer. Mid-October was the last time he was himself. The helpless, speech-less, child-like being living in my husband's body was not the man I fell in love with. Luckily, we had so many years and made so many memories that I can mostly suppress the horrors of those few weeks. I had no idea how deep my love and respect had grown through the years until I was called on to feed, cleanse, and diaper the body that used to house his soul. With every cell in my body, I fought to preserve his dignity and serve him with respect. But, I hate that disgusting disease that ripped the strong, intelligent, resourceful, humorous, loyal, energetic, sentimental man out of my arms long before 11:37 PM on February 23, 2005. The brave (those who dare to risk the answer!) ask, "How are you?" "I'm surviving." is my usual response. Actually, I should amend that. Most days, I am doing better than that. I have so much to be thankful for. When a day is especially bleak, I'm lonely, my kids are cowering from the raging Mom beast, I force myself to count my blessing and continue to praise God. I have hope and faith that there will be joy in our earthly lives and that we will see Richard again. I continue to bask in the love of family and friends. My sister and I have deepened our friendship. The love of my family and friends and all the ways they have chosen to show it cushion the blows life has thrown us. Today, the battle of my life has boiled down to Letting Go and Letting God. The excitement is over. Although many remain, the crowds have disappeared. It's just the girls (that, I, alone am responsible for!) and me trying to forge a new normal. During the height of the crises, I wasn't eating, sleeping, thinking or praying. The prayers of others carried me through. Now, for the first time, I sometimes feel like I'm on my own. It's up to me. But, it's really not, Thank God! My prayer is that my life and my God cease to be separate. I am still fighting my dread of calling for help, and I've become more adept at dealing with "stuff". How thankful I am to find that I have enough brain matter to deal with or adequate sense to know when to reach out for help when I have a flat tire, five out of the six screws holding the coffee table together strip, the water pump blows and Lake Vizcarra erupts in our crawl space resulting in no water to the house on a Saturday night, the satellite receivers (yes, both of them!) give up the ghost, huge patches of the lawn die, one huge window warps and no longer closed securely, the phones (x2) in the office quit working, Zeta drops and breaks the computer's track ball, I stupidly order a picnic table and a play kitchen for the girls not thinking how/who is going to assemble them, and the dogs decapitate a rabbit and bring a small part of the head and eye in the house. Like clock-work, it's all especially worse each month that the dreaded PMS strikes. Yes, the devil has been busy these past seven months since Richard died. But, blast it, the girls and I are still here. We're learning to laugh again and praise God at all times. I'm truly experiencing that being faithful is not so much a task that I am responsible for but rather it is a blessing that God is. He has continued to be faithful, to provide for our every need. Painfully, this control-freak is learning to let go. As I cry out to God (since I'm NOT going to take up the offers of those good souls who say, "Call anytime" at 2AM), He pushes, pulls, and tugs me over each hurdle. Looking backward, I so clearly see His hand in our lives. If He's brought us this far, He's not letting go now. I'm sure of it. Sunday, May 29, 2005 I'm going through another round of facing the realities of my new life and not knowing exactly how to deal with it. Everything looks the same, but my world has tipped at a crazy angle. Now, I know why Richard loved reading manuals cover-to-cover. Where at Amazon.com is the step-by-step instructions for 39-year-old widows with bright, active 4-year olds and 13-month olds? Someone asked me what life is like. I described it like this. We've all occasionally experienced those moments where you go into another part of the house and then stop, wondering why it is you're there. That's my everyday life. I have numerous moments where I can't remember what I'm doing, where I'm headed, and why. I really scared myself when running late, I worked up a sweat racing around the house looking for my car keys, muttering a few choice words under my breath, only to find them in my hand. Really. I did. This last week, I hit the lowest plane of pain I've ever experienced. Guess it was bound to happen. Not much I hate worse than being out of control. I can only pray it doesn't repeat itself or get worse. What brought it on? I can only surmise it was the sum of numerous things. The third anniversary of his death. Experiences waves of memories as I drove alone in his car and listened to his music. The upcoming Memorial Day weekend when we normally hosted a blow-out Korean BBQ. Visiting the grave at the National Cemetery awash in a Memorial Day sea of small flags waving below each marker. Dealing with his stuff (note to readers: get rid of anything, now, that might give your survivors questions you won't be there to answer). For the 24 hours from Thursday to Friday night, I almost ceased to function. I was a mess. Pulling out pictures, I howled, hardly able to clearly pick out my dearly beloved through my tears. Lauren went running for Kleenex and kept reassuring me, "I love you, Mommy". No four year old should have to be comforter to a basket case parent. I pray she remembers Richard ,but I hope she represses the other traumatic memories of the past few months, especially her mother's moments of insanity. On Friday, I threw sliced turkey and cheese on a plate, filled sippy cups of apple of juice, and told Lauren to feed herself and Zeta. Thankfully, Zeta napped from 11AM to 2PM. I put Lauren in front of Nick Jr (a pre-schooler channel) from 11AM to 3PM. Lightheaded and dizzy, I sat in my bed, pjs on, no shower, the blinds still pulled down until 2PM. I tried to sleep but couldn't escape that easily. Finally, God put through a call from my girlfriend, Kelly, to pull me out of my funk. She reminded me that in the book of Philippians, we find comfort and power by Praising at our lowest moments. Actually, oddly, it made sense. After all my experiences of late, I saw wisdom in it. I'm trying. Don't worry. I'll survive. Some healing has begun this third month. Richard's mother contacted us the week before Mother's Day to see how we were. It was nice to talk to the one other woman in the world who is hurting as much as his wife. I have felt ready to join a grief support group. We'll see where that leads as the two "Young Widows" groups that I have been given information on are a) not returning my calls and b) the contact number is temporarily out of service. Makes you wonder about these facilitators.... Until this month, I felt like Richard's death hung over me 100% of the time. Now, 5% of time, I feel like I'm moving forward, making progress in establishing my new life. I'm starting to feel less guilty when I go out and actually laugh or enjoy myself. I'm even getting tempted to try my hand at entertaining solo. Mother's Day. There's no one else to plan it now. Richard truly sweated over Valentine's, my birthday, Mother's Day, our anniversary, and Christmas. The compulsive, stickler-for-details guy hated not doing it just right or letting me down in any way. My loving husband, the perfectionist, knew how much joy I got out of these special days, and he'd stress trying to get it just right. Bring him back, Lord. I promise I wouldn't expect anything. I just want to lay next to him at night, stretch my foot out to contact his, and listen to him softly breath. Remembering my vow to be strong, to get on with life, I made reservations for a Mother's Day brunch downtown and invited friends to join us for it. I even bought myself a gift. How hollow the celebration felt. In church, our minister encouraged the kids to come up and get a rose to give to their mothers. How does one appropriately send one's own child down the aisle to get a flower for yourself? Shouldn't there be a Daddy in this picture to take/send the 4-year old to bring back the posy to Mom? So, I went flowerless. Oh, well. I guess it's another one of those milestones that will be extremely difficult this first year and then get easier (pray, God) in years to come. Thank you, Nicole, for your thoughtfulness in helping Lauren plant some of my favorite petunias in hanging baskets for the back patio and planters for our front porch as her gift to me. I dread the upcoming partner to Mom's Day, Father's Day, far, far more. The day we left the hospital with Lauren, Marsha, an OB nurse, told me that I would fall in love with Richard all over again watching him as a daddy to our daughter. At that moment, I had no idea how profound her words were. Now, nothing kills me more than giggling in bed on Sunday AM with the two girls, remembering that their daddy used to make them laugh the hardest. Richard would have found some clear answer to Lauren's inquisition as to why fatty foods are bad and what Mom is talking about as she stumbles through some explanation of "clogged arteries". Seeing all the "Daddy and Me" books prominently displayed at the bookstore in honor of Father's day was a blood gushing knife wound straight into my mother's heart. With all the aggressive retailers out there, I have no hope of taking my preferred route of pretending the occasion doesn't even exist. At pre-school, Lauren proudly made a Mother's Day card and gift for me. What's going to happen next month? I guess I'm going to have to rely on the professionals at Lauren's pre-school to know how to handle this. Perhaps, she can do something for a grandfather? I survived my birthday. Thank you to all who e-mailed, sent cards, and called that day. Again, feeling that I was not alone helped me enormously. I would have given anything to have had one of Richard's full body, shelter-providing hugs. Sharon, Minou gave Lauren and I gift certificates and an appointment for manicures and pedicures. Nicole babysat, helped the girls bake treats for me, and then met me downtown with the girls and Deanna for dinner. The "Swim Grandmas" hosted a lovely lunch a few days later. Some of the OR ladies invited me to dinner as well. The biggest gift they gave me was the promise of making this "Girls' Night" a monthly event and immediately setting a date for June. Some fun, adult time to look forward to! Finally, my dearest girlfriends, the ones I met through the New Moms' Support Group four years ago, also met for dinner. "Thankful" doesn't even begin to describe my deepest gratitude for all these dear friends who carried me over the hump of my first birthday after Richard's death. More difficult than Mothers' Day or my birthday (thanks to all my dear friends) was celebrating Zeta's birthday. While we did a little something on the actual day, I didn't want to cheat her out of a celebration similar to that which we have had for each of Lauren's birthdays. Realizing my own limitations, a couple of weeks ago, I invited several kids near her age (and their siblings - near Lauren's age) to meet us for pizza and playtime at an 3-level indoor jungle playland. Nothing to cook, no activities to plan, no clean up. Just what I could handle, I thought. Yet, I was numb and distracted the entire time. If anyone had looked at me funny, I would have been a puddle on the floor. Last December, I worked with Vern Usher, the scheduling partner, to get Richard a day off for Lauren's birthday party. It bothered me enormously that Richard was not a part of Zeta's first birthday celebration. The Lord continues to provide for us financially. Two of the three life insurance policies have finally paid out, the first check arrived on my birthday; God's birthday gift. The third, and largest, policy proceeds are still in limbo. Apparently, since Richard died three days short of the policy's two year anniversary issuance date, the company has exercised their option to launch a full investigation. CJD is not a disease we could possibly have known about two years ago. However, they're trying to discover if there was anything else that might have caused them to not underwrite the policy to begin with. I know my God did not bring me this far to drop me on my face. So, I'm confident that something will work out. In the mean time, He has provided for us each time the bank balance dipped. A few more accounts receivable from Richard's hard work in November/December would trickle in. Reimbursements from Richard's medical flexible spending account arrived in the mailbox. Our tax return refunds or the girls' Social Security payments auto-deposited to my (still striking to say "my" instead of "our") checking account. Thank you, God, that this is one more thing I don't have to worry about, knowing that even if that policy doesn't come through, You will provide. I was so touched to receive two offers of funds. Both came from families at our church that we hardly know. Had money been offered by family members, that would have been one thing but people we've barely spoken to! There are such incredibly good people in this world. Thank you, Lord, for showing me your mercies through these people. Continue to teach me. Help me to be a better person in the future than I know I've been in the past. Girlfriends have become my lifeline. I survive looking forward from one event to the next. Sometimes, I feel guilty for being on the phone, sitting at the computer, or abandoning my daughters to go out. Last week, I heard Lauren tell someone that she had "lots of sitters". Yet, my daily dose of adult time with Richard is an enormous void to fill. I took so much for granted. Every day on his way home from work, he called me, and we ran up his cell minutes debriefing our day. Sometimes, he had an errand to run and even if it was out of his way to come home and pick us up first, he'd do it. It was great family time. If one day, the girls look back and decide I was gone, on the phone, or "doing" e-mail too much, I hope they'll understand and forgive me. I truly think I'm able to keep marching along right now because I get my adult time. I hope my daughters see that I did my best to find competent, loving sitters/nannies to hand off my mommy duties to. 2-3 times a week, it is such a blessing to approach the day's end knowing that someone else is in charge of the dinner and bath routine, and the only thing on my to-do list is the fun story-time assignment. Zeta continues to amaze me. Swaddled by a clean diaper and fortified by an ever-hearty meal, she waddles off. Independent, self-sufficient, and quick to giggle. Unlike her sister who still follows me from room-to-room, Zeta self-entertains. She misses nothing. Opening my bathroom cupboard, the clever 13-month-old, took out my hair gel, tapped the correct end on her open palm, rubbed her hands together and then proceeded to run her fingers through her hair. God, may my actions always be worth emulating. Richard would have been charmed by this small mirror image of himself. I believe in providing the girls opportunities to learn but not being pushy in any way. They have numerous years ahead to study and be a part of structured learning. So, at this point, I emphasize play and fun. Yet, somehow, Lauren's been teaching herself to add and subtract. One recent Sabbath, as we were getting out of the car at church, she announced, "There used to be four of us, but Daddy died. Now, there are three of us. Four, take away one, is three." The conflicting emotions of a mother's pride and a widow's sorrow joined hands, yet again. Sitting in her carseat, facing the still backward facing Zeta, Lauren has been singing songs to her sister about their daddy. Her lyrics talk about his dying, about the things they used to do together, how she misses him, and so on. Listening to her, I was so unnerved driving to church one day that I rolled into the mini-van in front of me. Luckily, it was just a tap and no damage done. I've started responding to some of the 500+ e-mails we received via the web site. Some of those messages were so comforting, I read them over and over. I continue to derive such comfort from knowing that others loved and appreciated Richard and that they miss him, too. It is so very comforting to read the new notes, knowing that the girls and I are not forgotten, that people care about how we're getting along. I've always heard that it's harder for the widow/families after all the services are over and the people gone. It's so true. You almost resent all the people who are going on with their happy lives while you're struggling to figure out how to survive. I have always re-charged my batteries by being with/surrounded by people. This is still true. However, I find that my moments of deepest grief are solitary. People have commented how unbelievable it was that I was able to stand up at the celebration service and talk about my life with Richard for eleven minutes without breaking down. Actually, few have ever seen me shed a tear over this - even my family and closest friends. It shocks me that this very extroverted person suddenly finds that some parts of her life are painfully private. It appears that these gut-wrenching, curl up in a ball on the floor of his closet, crying fests are reserved for me alone. Usually, during the Oregon winter, my water bills hit annual lows. This year, my long showers are keeping that public utility's budget healthy. I stand there mixing tears with shower drops. I remember thinking I was going nuts not being able to see him during his 91-day Air Force Tour of Duty in Kuwait in '94. It's so much worse now. He can't call me everyday. There's no finite time to "get through" before we're reunited. Several have offered to go to the gravesite with me. Now, that would be fine. But, the first few trips, I had to fly solo. The first glimpse of his name engraved on a gravemarker couldn't be shared with anyone else. I know he's not really there, but I find it comforting to clean up the clutter at the site, tell him about our incredible daughters, reminisce, cry, or simply sit silently. Driving alone in his car last Thursday, listening to his "STYX - Greatest Hits" album, I hurt so much I was convinced I was going to throw up. Hearing "The Best of Times", the words knocked me flat. Suddenly, I had a flashback of hearing that song on a cool, sunny day while zipping (Rich was driving!) along Napa's scenic Silverado trail. I don't remember the timeframe or the details, but I know we were talking and laughing with light, carefree hearts, not knowing that our time together would be so very short. I've finally been convinced that for this first year at least, nothing has to make sense, and I owe no one an explanation for how I choose to cope. If I talk about Richard incessantly and it bothers someone, oh well. Sometimes, I worry that I my life is all about being "super-consumer". It seems like all I do is spend. Take-out meals. Clothes - for growing Lauren and not-growing me (thank goodness - I haven't gained back the 13 pounds I lost while Rich was sick and actually lost a couple more). Vacations. I found a $50 Alaska Airlines companion coupon for Lauren, and we're headed back down to Southern California to meet friends for Legoland, etc. We'll see my parents when they return from Europe. I feel like a bit of a cop-out to be taking our second hop south. It feels like I'm running away again. Oh, well. Please continue to pray for us. Often, I feel like I'm too week, frantic or numb to pray. I take great comfort in knowing that there are others who are lifting us up in prayer. I don't know how this works. I know that the God that I love and worship takes good care of us regardless of our humble prayers. Yet, somehow, I know that there is power in prayer. Especially during those frenzied, chaotic five weeks and one day between diagnosis and death, I hardly knew how to breath or blink, let alone pray. Yet, starting with the night of the annointing, I had the focus, energy, strength, and often peace of mind to go on. It can ONLY be attributed to the power of prayer. For the girl who spent her whole childhood dreaming only of "happily ever after", of being a wife and mother, it's a dream cut short, a dream of 50% come true. Luckily, that little girl was also raised to be a survivor. She's gritting her teeth, squaring her shoulders, determined to move on with whatever life hands out.
Through the end of March, our kind and wonderful "hospital family" continued to provide meals for us a couple of times a week. Then, our dear "church family" began their love in action with gifts of food. Bless all of you from the grateful heart of a mom who needs to provide for her daughters physical and as well as emotional needs. You've truly lightened that part of my load. We've begun to ease back into real world, small steps at a time. We've been back to church a few times. Last weekend, Steve and Minou Crook invited us to join them downtown for breakfast with Sean and Kirsten Crombie. My first impulse was to decline the invite. But, remembering my new resolve to "accept my new life and get on with it", I accepted with thanks. I didn't perform the "get out the door dance" with full grace and certainly not with speed, but, by George, I did it. Thank you, Steve, for seeing that I was a bit overwhelmed trying to feed the two hungry mouths on either side of me and popping a piece of your pancake in Zeta's open bird-like mouth. Can't report that it was a relaxed, leisurely meal, but I did feel better having gotten out and about. I've found that it really helps to have things on the calendar to look forward to. Thank you to our friends who are helping us meet our "social needs". We're trying to spread ourselves out so we don't overtax our welcome in any one place. This past week or so was challenging. Lauren threw up Thursday, Friday, Sunday and Tuesday. Zeta threw up all day Sunday and had diarrhea on Tuesday. On Sunday, Lauren was feeling sick and began crying on the couch. Carrying a fussy Zeta, I rushed to help her tucking the ringing phone between my ear and shoulder on my way over. Sadly, I didn't see the toy strategically positioned just below the step down into the family room until I fell over it and felt my foot/ankle twist into a very unnatural position. To cap it all, Zeta shared her nausea and diarrhea bug with me, and I limped to the bathroom all day Wednesday. A giant hug of gratitude goes to Tammy HeCrow who raced to our rescue, brushing off my concerns about sharing our germs. She appeared as Florence Nightingale with Imodium, crackers, 7 Up, and toys in hand and didn't leave until the kitchen was tidied up, the girls were fed, Zeta's diaper changed, and I got a nap. What would I have done without our neighbor Kathy, "Grandma" Mary, friends Lisa and Cynthia who helped with the girls while my ankle does its tennis ball imitation? One of the most difficult transitions for me has been my loss of independence. I can no longer exist on my own, and if I lived until the next millennium, I would not come close to paying back the debts I have incurred to the dear friends who routinely come to my rescue. Richard would be mortified but eternally grateful to each of you. Learning to call for help and mastering the art of graciously accepting help has been one of the toughest assignments of my lifetime. Perhaps, it is the loss of control, that has plagued me all my life, coming into play again. I can't help but draw the comparison to my spiritual journey. I don't deserve salvation. Nothing I do gets me there. All I can do is ask and receive. And, I have no way to return the favor. The control freak in me is struggling violently with all of this. It just doesn't feel right. We took the "change of scenery" route two weeks ago and flew down to California. I had many plans; to take Lauren down memory lane on the Loma Linda Academy campus, to look up friends, do a little shopping, etc. But, it just didn't happen. I hope those of you in Southern California will understand and forgive me. I just simply moved into my parents home and sat there. I slept, cried, read books on grief recovery, stared into space and quietly remembered good times with my husband, best friend, and father of my daughters. I did keep my promise to Lauren, and we spent three days in Disneyland. With the help of Kelly, Tracy, Tristan, and Chandler Kilby (and my family on one day), Lauren discovered the Magic Kingdom. Rides, fairy princesses, cotton candy, restaurants (a routine favorite outing she's told me she's missed since Daddy died), stores filled with toys ~ she had no idea such an indulgent place existed. The trip was a good distraction but I felt the familiar weight of the ton of bricks descend on me the moment I walked back into the house. I can only escape life, real life, the rest of my life, for a short time. It's not the house, as some have theorized and suggested that we move. Actually, our home has a lot of comforting memories, and since it's the only home the girls know and remember, I'm not about to uproot them anytime soon. What I felt on our return was the same feeling of pointlessness. When I think about our daily routines, I feel like that hamster running madly on his wheel; expending a great deal of energy, going no where. I know. I've heard it. "You have the girls to raise." Yes, I do. But, I want to share their joy and excitement of a first trip to Disneyland with someone. Over the top of our four-year old's head, I want to share a grin with my husband and that "Don't you dare start laughing, or I will" look when she says something hysterically funny but know that it will hurt her feelings if we laugh. How Richard would have loved to see them. Zeta would have made him laugh. There just something very funny about her. It just doesn't seem fair that he never knew Zeta as much more than a helpless infant with undeveloped personality traits. Shortly after she was born, he told me that when people at work asked him how the baby was doing, his standard reply was, "She eats, sleeps, and poops." Honey, she does so much more now, and you're just not here to see it. I want to scream. Richard regularly pushed me out of my comfort zone as Lauren grew. I tended to coddle her. He challenged her to push herself physically, do more independently. Who is going to do that now? We talked about one study's finding that the common denominator of successful women is a solid relationship with their fathers. I know its not a prerequisite, but I want the ideal. Rich and I talked about several smart women that we knew who made really dumb choices regarding men. He vowed to show our daughters how they should be treated, the respect they deserved from their dates, boyfriends, and eventually husbands. I need you back, Richard. Dear God, help me to trust in your promises to be there for the widows and the fatherless children. I pray my girls won't be damaged because they don't have a strong male influence in their lives. Many have asked how the girls are doing. Zeta celebrated her first birthday in California on April 2. We had a small, low-key family dinner. Zeta is petite, like her sister. At 16.25 pounds and 28.5 inches tall, she's a pound heavier and an inch taller than Lauren was at this point. She has a hearty appetite, an extremely sunny disposition, cruises expertly (up/down stairs even!), exhibits an independent streak a mile wide, and defends herself (and whatever she has in her hand) valiantly. She's started to sign. I've clearly seen "more" and "dog". The words for "dog" and "bye" are not clear, but the sounds are consistent. So, we'll have another talker in the house soon (oh, help!). The girls are learning to enjoy each other. It's wonderful to watch them interact in the bathtub, for example. Zeta holds her own. If she had a tub toy first, she's not shy about going after it if her big sister thinks she's entitled to it. Last Saturday night, watching them communicate (tho' one doesn't yet speak) and giggle together, I suddenly felt the outsider. Where was my playmate? I desperately miss an adult to talk to. Lauren is adjusting. She finally expressed some interest in returning to Pre-school the last day or two. Until now, she has struggled with being separated from me except in very familiar situations. She asks if I am sure that Daddy will there in heaven when we get there and wants to know why Jesus is taking so long to come and get us and take us to heaven, too. I am now wearing our wedding rings on a necklace. She told me, "I don't want you to wear that. It makes you think of Daddy, and then you cry." The books say to not be afraid to cry and show grief in front of your children. So, now what? I pray for wisdom. My constant prayer for Lauren is that she will be able to hold on to her memories of her daddy. Specialists tell me that it's pretty iffy that a four-year old will remember. The other day, she was talking about "long, long time ago" (December) when Daddy could talk but saw two of everything. She told me how he put his hand like this (cupped over his eye) and read to her. "But, Mommy, even when he couldn't talk, he still said, "I love you." referring to February 7 when Richard was speaking rarely but managed to express his love for his daughter one last time. Someone suggested that I get Lauren on videotape talking about him. That would mean I would have to find the video recorder and learn to use it. My life is a series of "firsts." Firsts. Last week, I wrote the word, "widow" on the marital status line of a form. What a shock that was. I find it terribly insulting that in the eyes of the law, we are no longer married. On the 26th, I mark my 39th birthday and the first in 17 years without my best friend to celebrate. Last year, Richard took me to Morton's for dinner and surprised me with a pendant that I had admired at Christmas time (he got me another piece I liked then and went back for this one for my birthday). I continue to find examples of Richard's sentimental side. Last weekend, going through the meticulously organized drawers in his closet, I found all his ID cards from high school, college, medical school, internship, the Air Force, and residency. The flood of memories had me sitting on the floor of his closet, crying. I drove his car a few weeks ago. After 16 months, it still has that "new car" scent. While clutter free in every other way, I found in the glove box, two notes that I had written him and taped to his steering wheel. In his e-mail in box, I found seven other notes I had sent him in the summer of 1999. I guess my thanks for a great weekend, appreciation for help with the girls, gratitude for specific personality traits, wishes for a speedy recovery from an illness, and sentiments of love and the things that I loved about him meant enough for him to keep them. How I wish that I had scribbled more short notes. A group of us were talking about the Terry Shiavo situation a few weeks ago. Sharon Wong Gosney said she missed Richard and noted that if he were here, he'd make some succinct comment, and we'd all know exactly what he thought about it! We were never left to wonder where he stood on an issue. I miss other funny things. I miss the feel of his wiry hair. I miss the look of his narrow, bony feet. I miss all the little inside jokes that couples store up over time. I miss his smell - the combination of Dove soap and his cologne. I sniff the bottle. Occasionally, he talked about getting something new. I wouldn't hear of since it's the scent I've associated with him since college. I had it all, once upon a time, and I want it back. Ever since we've been together, we were always moving towards "the goal". Get Richard through med school, Air Force payback, residency, and into private practice. Buy the dream house, have the two kids. We were there. Life fit, it was comfortable. The Lord and I have some pretty blunt conversations when I'm out driving by myself or when I'm in the shower. I tell him exactly what I think about my new life. People often say to me, "You're so strong." I'm not. I don't feel strong. I just have no choice. I have to put one foot, slowly and deliberately in front of the other. Curling into a catatonic position under the dining room table won't get my kids dressed, the dogs fed, or my bills paid. Just after Lauren was born, I remember chatting with a friend about how much easier it was touch my "tear button". You should see me now. Several people have asked if it's okay to talk me about him. Please, do. Holly Brown, an OR nurse, shared with me why Richard was special to her. She recounted two specific incidents. How much that means me! How beautiful it was for her to seek me out to share that with me. I take the memory of that conversation out and wrap it around me when I'm alone in bed at night, in the dark, shivering from the icy cold breeze of loneliness. I'm ready for heaven, God. Two weeks ago, Lauren began complaining that all her shoes hurt. So, I packed everyone up in the car went to Nordstrom's. In the past, Richard always seemed to get "the vibe" when we were there. He'd call my cell phone and say, "I had a break in my day and just called to say, "hi". So, where are you?" When I admitted we were out spending money, he'd laugh and say, "Well, I'd better trade down and work more then!" He never really complained about anything we spent on the girls and rarely about anything that I bought for myself. He was tickled seeing the girls' dressed up and looking cute. Mount St. Helens erupted a couple of weeks ago. Richard would have been calling me from the OR wanting to know what it looked like and asking me to go out and take pictures of it from our yard. If he was lucky enough to be home, he would have been out there himself with the spotting scope and the camera. How long will it be before these kinds of thoughts (e.g. Richard would have......) quit running though my brain? Or, at least, how soon will it be before they cause less pain than chest surgery without anesthesia? Lauren talks about him quite a bit. One day, we went to two stores. In both, Lauren made it a point to tell the saleswomen, "My daddy died." They both looked at me as if to say, "Is she serious?" Just what I want to do - scrape the scab off my fresh wound to expose it to some stranger. I guess I'll just have to get used to it. She frequently asks if I miss him. One night, she leaned out my open bedroom window. Looking up at the stars, she prayed, "Dear Jesus, please help Mommy not to cry so much. Please come take us to heaven very soon so we can be with Daddy, and Mommy won't cry so much." When I couldn't get his elaborate remote control to work one night, she confidently said, "My Daddy can help us!" Hearing herself, she paused, "Oh, my Daddy died." The girls' are what make me tired enough to sleep at night and provide me with the reason to get out of bed in the morning. But, watching them hit milestones (Zeta walks now), seeing them do something cute (Lauren doing the motions to songs in Sabbath School), contemplating the massive task of raising them alone, brings me a great deal of sorrow. I hurt because they are missing the opportunity to truly experience their father, and I am missing his wisdom. I don't feel like I can do it (this parenting thing) justice on my own. Someone referred to me as a "single mother" a few weeks ago. I was beside myself when I realized that that is what I am now. Oh, Lord, I pray for guidance like I've never prayed before. I can't mess this up. Without a doctor in the house, I made three trips to the Pediatrician in eight days. I truly relied on Richard's judgment for so many things. He clearly knew when it was something he could handle and quick to refer to the Pediatric specialist when he was out of his comfort zone. Last Sunday, we were invited to participate in a potluck. The woman who used to cook to get through her stress no longer live here. Good thing the meal was planned for late in the afternoon. It took me until 3:00 to make two simple dishes along with shower, dress, feed, nap, administer meds and breathing treatments (did I mention that last week Zeta joined her sister as an asthmatic!?!?), and pack up the girls. By that time, I was in tears. The thought that this is the rest of my life was overwhelming. It's so difficult having no one to hand off to. I don't want to do this alone. I'm sitting tight while waiting for the life insurance money to come in. But, I've felt the need to make a few changes. I rearranged the furniture - that was inexpensive. I've ordered new bedding. All I could think of in the store was, "He would have loved this fabric." Last week, I put a TV in our bedroom. Watching the news late at night or early in the morning, I miss Richard's take on life. I'm going to miss my personal commentator, my personal editorial page, especially four years from now when we come up on another Presidential election. My brain is not functioning properly yet. One morning, I upset my routine of feeding Zeta first and then nursing her. I nursed her first and completely forgot to feed her, wondering why she seemed tired but couldn't settle down for her morning nap. How pathetic. Thank you to those kind souls who are still providing meals for us. Throwing something in the microwave is just about all I can handle right now. Meal planning, grocery shopping, etc. is beyond me. A hug of gratitude goes to the kind people at Richard's corporate office. Not only have they provided meals, but they have gone over and beyond the call of duty to assist us in every way. Their kindness, for example, in helping us with the Cobra arrangements so that I can delay worrying about details like health insurance are truly appreciated. I got the DVD of Friday's gravesite service back and watched it with a friend after the kids were in bed. I found it enormously comforting to hear the words and prayers spoken and see the many (250+ the funeral director tells me) faces there. Thank you to those of you who came from every corner of the earth, near and far. Your presence, your e-mails, your cards, your tears, your hugs - each convey your love and respect for Richard. I dearly need to know that others miss him; that others knew what a wonderful person he was. It's therapeutic to talk/write about him. Thank you to those who are taking the time to e-mail even if we haven't seen or spoken to each other in years. Whenever I'm feeling low, I log on to the website e-mail and read the 460+ messages there. I wish there were some check list that I could just complete and be done with this "grief" thing and be able to function again. I don't believe I am still numb or in shock because the pain is so great. I had expected that the days wouldn't be so bad as he was always at work during these times. But, I find that his death hangs over me constantly. I go past his closet and see the pair of shoes that he wore every day. They shouldn't be there. They should be at work. I face his loss at every turn. Next month will be my first birthday without him. He usually took the whole week off. The world celebrates Easter this weekend. I am reaching deep within me and praying to God for strength to celebrate this great event with my girls both the silly parts (egg hiding/hunting, pictures with the big bunny living in the mall) and the life altering part. Easter takes on a whole new meaning for our little family this year. Without the miracle of the resurrection, we would not have the hope of seeing Richard again. Because He lives, Richard will also live again. When we get to heaven, don't anyone stand in my way of getting to him. You will be mowed down by one desperate wife. Tuesday, March 15, 2005 I plan to keep this web page live for the foreseeable future. While my "updates" will not be daily, I will write from time-to-time to let you know how the three of us are doing. Pictures from the two services will be posted this week along with the written copies of the tributes made at Sunday's Celebration service. I check for e-mail message several times a day. Your notes are a highlight of my existence. Your fond memories and related stories are a balm to our open wounds and help to remind me that there are others who knew of the incredible human being that Richard was. Your expressions of love and concern are extremely comforting. Monday, February 28, 2005 I am at peace and, yet, in the deepest of imaginable pain. Keep praying for us. If I have learned nothing over the past few weeks, it is the POWER of prayer. In the blender of emotions and activity, I know it is the only thing that has kept me sane. Last Monday, Richard began slipping into a deep sleep. He responded to very little, if anything. I badgered the Hospice workers, our private CNA caregivers, and all the medical-type people around us for information as to all the things that could happen, all the ways the end could arrive. Of course, we could not know when the end would come, but with each passing hour, we knew it was getting closer. By Wednesday, his breathing became more raspy, his color not good. Ever thoughtful, Lisa Sloop gently suggested that I get Lauren to bed to minimize her trauma and allow me to concentrate on Richard. When I returned, his hands and feet were cold, his breathing shallow with periods of apnea. I have been terrified that the end would be ugly, that he would suffer in some way. God was merciful. His body simply shut down and went to sleep. Having him go peacefully meant the world to me. I sat holding him for the next hour while I made calls to family and his best friends. I debated as to whether I should be waking people up. Those
At this point, I have no regrets of the way we lived the short, turbulent past nine weeks. I did the best I knew how to get him the help he needed, to care for him, to keep him comfortable. I tried to involve and invite in the people that have walked his life's path. In what I knew would be a very short time frame, I juggled and attempted to balance my needs as a wife and the needs of our daughters with other family members and friends who wished to say "hello" and "good-bye". My prayer has been that I would do and say nothing I would regret. It was a short, record-breaking sprint. We ran a good race. Many have asked me and counseled me over the past few weeks about asking God, "Why?" Truthfully, I have never done so. Not for a moment - which shocks me as much as anyone. It finally hit me last Friday why I have not. Simply because the Lord has never left my side. I would only have asked "Why?" if I didn't feel God's hand easing me through every aspect of this crisis. The people, the expressions of love, the food, the help with the kids - it all became far more overwhelming than even the situation we found ourselves in. Looking back, I realized that the Lord knew what was coming and positioned us in the best possible way to survive this. I can't explain it. I have no idea where this trust came from all of a sudden. I can honestly say that I was not a very strong woman of faith prior to this debacle. I went to church. I prayed before bed and meals with my daughters. I had a fairly good academic understanding of "religion". But, trusting in the Lord, giving up control, you have got to be kidding. I can only think that it has been the power of all of the prayers ascending for us that has kept me from ranting, raving and just cursing God and asking to die along with Richard. I can only pray, fervently, that whatever it was that made us keep marching along will continue and grow (please, God!) in the future as that is a much more daunting task to face. My gut tells me that the hardest, most challenging, lowest part of this is yet to come. My faith hasn't given me the power and strength, yet, to see beyond this weekend. Right now, all the details of the services (which I have been determined to place my "paw print" on every aspect) are keeping me occupied. Lots of boxes to check off. While not "Why?", my question is, and has been, "How?" How do I carry on? How do I live my life without Richard? My entire adult life, and some of my growing up years, intimately involved him. He called me and got reacquainted 18 days before my college graduation, and we've never looked back since. The monster in my closet that I fear is Loneliness. So often, it seemed as if everything the girls and I did was moving us to the evening when Richard came home or to a weekend when he was off. "Ask Daddy when he comes home." "We'll show that to Daddy when he come home." "We'll do that this weekend when Daddy's here." Most of our activities involved other families. Now, will we be remembered? When we are, how will I feel being the only one there without a spouse to take his turn getting the girls something to eat, monitoring their play, or helping me get them both loaded back into the car. Can I gracefully perform the "Get out the Door Dance" or the "Get them Fed, Gathered, and to Bed Dance" by myself each and every day? Oh, and the evenings after the kids go to bed...... Who can even think about that? I know that I must keep praying and trusting in God to provide. In all honesty, I just don't know if I can do that. Will prayer, so abstract, so non-tangible a concept be enough? Similar to the last two months, I have no choice. Life goes on, and we have to cope somehow. Dear, Lord, show me this miracle. Several have contacted us about whether the gravesite services were private. Richard taught me the fun and joy of living an open (sometimes revolving!) door policy. Everyone was always welcome. Nothing has changed. I'm pleased with how the services are shaping up. I have included the three pieces of music used at our wedding during Sunday's services. "Rest in His Love and Abide" worked well for the wedding, the lyrics even more perfect for this occasion. Pastor George Gainer will share his January 21 conversation with Richard during which he affirmed his belief in Jesus Christ and his acceptance of the Gift of Salvation. Bill Hemmerlin, the much respected Chemistry Department chairman of Richard's alma mater,
Richard J. Vizcarra At 11:37 this evening, Richard fell asleep on Jesus’ pillow.
I seek the perfect amount and timing of the Diazepam (Valium) drops that will allow him to be calm and tremor-less, yet remain alert enough to "eat". Today, less than a one-third cup of liquid nourishment found its way into him. We continuously attempt the Boost, spiking it with chocolate powder, as if making it taste better will entice his brain to tell him to swallow. I have begun to make arrangements for his services. In keeping with his wishes of "going out laughing", it will be a "Celebration of Life" rather than a "Memorial Service". His eldest brother and four dear friends have consented to put together their remembrances of Richard's short, but high impact, life. I directed the florist to the web site photos of my wedding bouquet so that she can replicate the flowers for his casket spray. Sheet music from our wedding is in the mail so the soloist can begin practicing. My father and dear friend, Linda Usher, have taken on the odious task of interviewing cemeteries and funeral homes allowing me to skip that horror. I've challenged my editor sister, Shelly, with finding something more unique and meaningful than "Beloved Husband and Father" in 27 characters/spaces or less for the grave marker. In commemoration of Richard's Air Force time, we're putting together a bugler and a 21-gun salute. I hope that when we meet in heaven, it will all meet with his approval. Our hospice social worker endorsed my moving ahead with service arrangements. She noted that it would all get more emotional once he passes. I wonder how that can possibly be? How much more painful can it get? Contemplating my future loneliness is almost unbearable at times. I've actually felt a physical pain in my chest. This disease brutally robbed us of our most precious commodity first; the gift of communication. We've always talked. When we first started dating, we often shared our past, present, and future until the sun rose, literally. Can anyone understand me like he does? Who else will bestow on me the privilege of sharing his thoughts, anecdotes of his day, share laughter over Lauren's words or anguish with me over her disappointments? Zeta's first tooth emerged this past weekend. At his bedside, I told him about it. His face showed not a glimmer of understanding. What other future milestones will I savor alone? Who else but this man who created these children with me can truly cherish these landmarks? Richard and I reconnected two weeks before I graduated from Pepperdine, and he was a freshman medical student. In my mind, everything through the end of college was part of "growing up" and "getting educated". The time since graduation has been "real", "adult" life. Richard is my adult life. I have often told him I don't really remember a time without him. Now, I am forced to contemplate an entire future void of his love, his humor, his strength, his counsel, his energy, his arms around me. I desperately pray that his memory will somehow be adequate. Oh, Lord, help me to believe that You can fill this void. Help me, dear Jesus, to understand that You are big enough to heal my gaping wound. Lauren continuously attempts to find her footing in all this upheaval. She's become quite clingy and wants to be home but enjoys her friends' visits. We're co-coordinating play dates in small doses to keep her occupied. In her
See Photo album #3 Richard's brain has begun to shut down in earnest. We see very few smiles, few signs of recognition. While our daughters entering his line of sight always used to get his attention and bring on a smile, it no longer does. When awake, it’s impossible to tell what is behind that vacant, unwavering stare. He makes not a sound, speaks not a word. As the Neurologists warned, his brain is now unable to tell him how to chew. Even the soft foods, e.g. applesauce, scrambled egg, soup, mashed potatoes, simply don't go down anymore. He just holds the solids in his mouth, his brain sending no signals as to what to do with it. We rely solely on Boost (similar to Ensure but better tasting I've been told), Carnation Instant Breakfast drink, juice, and pureed fruit for nutrition. Each time he opens his eyes, we attempt to feed him. It's a challenge to find what he will accept and by which delivery method, i.e. straw, sipper cup, spoon. Hospice sends a nurse to the house twice a week to check in and a health aide three times a week for an hourly visit to assist with showering, shaving, and oral care. I have been unable to move Richard or completely see to his needs on my own since we returned from San Francisco two weeks ago. So, while our health insurance only cover Hospice, I have been forced to hire caretakers from 8:30 AM to 8:30 PM each day. With the persistent help of Charles Bloom, we are now almost fully assured that this much needed help will be available each day. What a stress it has been to go from day-to-day not knowing if help would be arriving and if the person coming would be competent. Unable to sit up, Rich now spends his days in one of the two hospital beds set up in our bedroom and in the family room. As requested, Hospice delivered specialized air mattresses for the beds with plug-in pumps that continuously move and inflate to keep his skin from breaking down. Ever the cleanliness buff, Richard usually showered twice a day. In another attempt to maintain life the way he lived it, I insisted that he have a daily shower. Now, however, we've moved to daily bed baths since he is no longer able to sit up on the shower bench. Knowing how much Richard hates drugs and the fuzzy feeling that can result, I use varying doses of Lorazepam (anti-anxiety) throughout the day to control the tremors, reduce agitation and allow Richard to rest comfortably, yet keep him from being completely "snowed". The only good thing about this dreaded disease is that there is no pain. While Hospice has provided Morphine Sulfate, I have not yet had to use it. Easily over-stimulated, Richard now does best in a calm, quiet setting. More than 2-3 people in the room dramatically increases his tremors and agitation. This afternoon, our dear friend, Minou Chau, gave Richard a much needed hair cut with the assistance of two other people while numerous others circulated in and out of the room. Just after everyone left, the Hospice aide arrived for his bath. The resulting anxiety went on for the next 5+ hours. We moved him back into the bedroom, dimmed the lights, held his hand, stroked his arm, and spoke reassuringly to him. It took a great deal more Lorazepam to calm him after this much activity. Lauren was a flower girl in a wedding on January 9. Two days before, Richard unearthed our wedding video to give her an idea of the duties of a flower girl. Richard and I found ourselves surprisingly nostalgic and emotional reliving that day on tape. The incredibly obvious joy and giddy excitement we saw in ourselves, startled us, I think. We'd forgotten, or just didn't know, how much apparent hope and love floated right on the surface that day. Does any young, excited bride truly have a clue what she's talking about when she promises, "...to love, honor, and cherish ...in sickness and in health, in good times and in bad, ....'til death do us part." I surely didn't. How blessed I am by the years that we have had, dear Lord. Except for the obvious plea for more time, I wouldn't change a thing. After lunch and a nap at the house, Mark, Peter, and Kelly bundled Richard up, carefully loaded him back into the surburban, and we headed out to the beach. Driving right onto the sand, the guys simply lowered Richard onto a canvas chair. While he hasn't been able to speak for a while, he was unmistakably pleased to be out of doors. Careful not to tire him or let him get cold, Richard enjoyed a short, peaceful respite watching the kids play in the sand, poke at the numerous jellyfish washed up on the shore, and challenge the gentle incoming waves to catch their freezing bare feet. Throughout our time at the ocean, Richard appeared at peace. Something held the awful tremors at bay. On the way home in the car, the tremors/flailing returned. We pulled over to reposition Richard. Sitting in her carseat behind him, Lauren asked me, "Is my Daddy dying?" While she has been asking questions similar to this and I have been giving somewhat vague responses, this time, I felt impressed to reply in the most direct way. "Yes, honey, he is." With tears rolling down her cheeks, she said, "I'm going to miss him." See the Beach Photo Album Thursday, February 10, 2005 Over the past few days, Richard's memory and recognition of friends diminished dramatically. Now, when I read messages from friends or bring up memories of particular events, his face is often blank. He gave no sign that he recognized Carmen Gruia, one of the OR nurses who brought us dinner tonight. May it just be that he is more tired and thus, less mentally adept at night, I pray. Whether he recognizes them as his daughters or not, I am not clear. However, watching the girls, is the one consistent stimulus that brings a smile to his face. From a friend who became a widow at age 34, I was told to try and get at least one good photo of our daughters with their daddy, for their nightstands. So, for the first time since this ordeal began, we are closing down our home to visitors for one day. When I told Richard that we were planning a day out at the coast on Saturday, his face lighting up, he said, "Yeah!" Hopefully, it will be the emotional boost and change of scenery that we all so desperately need. With sitters happily occupying the girls, a full day caregiver in house along with Richard's brother-in-law, Dexter, to assist and Sara in town to give me strength, I tackled the nauseating task of finding a black dress this afternoon. Did it have to be black? Only because that has always been Richard's favorite color on me. Is this showing a lack of faith on my part that a miraculous healing is yet to come? I don't know. I struggle with that. I want to believe. Yet, in my humanness, I feel the need to control my world, to prepare so that the shock will not be so devastating. And, I reason, if he recovers, it will be something that he'd like to see me wear. We are being well taken care of by God's earthly ambassadors. We have a meal delivered to us each night, and I hear that they're scheduled through eternity. :-) What a blessing to not have to grocery shop, decide what to prepare, cook and clean up afterwards. The leftovers take care of our lunches. Huge, full meals have magically appeared on weekends that we've had a great deal of company. I don't even have to worry about diapers, wipes, baby food, groceries, toothpaste, soap, paper towels, tp, and so on. From an account funded by the fabulous OR folk, all of these and other necessary items are purchased and delivered to our home. They even go the extra mile and put all these things away in their proper spots. We lean on thoughtful acts of kindness, shared prayer, cards, and e-mail messages to assist us through this rocky journey. The support is awe inspiring. Truly, I cannot even dream up one thing more that could be done for us. Thank you, with all my heart. Through Sunday, I would have sworn that he knew everything that was going on around him, had perfect recall of the past, recognized everyone, and knew just what he wanted even if he wasn't able to express it. Today, I asked him questions, and several times, he just looked through me. Other times, he shrugged his shoulders as if to say, "Whatever. I don't care." The most difficult thing is that while he smiles at me, something is missing in his eyes that tells me that he knows I'm his friend and wife. It's as if he knows that I'm someone he likes but can't quite place me. What I wouldn't give for just one more "normal" day. In my mind's eye, I see Richard buzzing around the house, always so full of purpose. I hear his voice, often raised in excitement. I long desperately for the 2-3 calls a day I would usually get from him when he had a break at work, simply checking in on us, telling me something funny that had happened at work, or asking me to follow up on something. He always got ready for bed so much quicker than me. Then, while he lay in bed, almost comatose with fatigue, I would do my best to keep him awake, rattling on about my day, highlights of the girls' activities, and seeking his opinion on all aspects of my life. Oh, God, will I really have to wait out my life time before I can experience this sweetness and companionship again?!? Lauren trots around the Labor & Delivery unit as comfortably as her own home, she visited her Daddy there so often. In my mind's eye, I picture Richard, eyes twinkling above his mask, as he popped out of an OR, always delighted to see his daughters standing at the end of the hall; their visits, he once shared with me, the highlight of his workday. I remember February 2003 when I went to a "Mom-to-Mom Meeting" at a local church. They had a play room for kids and Lauren made her very first craft, a Valentine for her parents. After the meeting ended, we picked up lunch for Rich and brought the card into the hospital. I remember the pleased, surprised look on his face when he realized that our 25 month old had made something for him. He laughed heartily when she insisted to take it home and wouldn't let him have it. Apparently, her young mind didn't understand that she was supposed to give it to him to keep. Last night, Lauren bounded up on our bed, startling Richard awake, to say goodnight and deliver her nightly kiss. His spooked, blank stare and flailing arms frightened her. I immediately hopped up, squeezing her tightly against me. She asked me why daddy's arms waived around like that. I explained that daddy's sickness made him unable to control his movements. Ever resilient, she started moving her arms saying, "I can do that, too!" Now calm, looking him directly in the eye, she said, "I love you, Daddy." Not expecting an answer, I quickly replied, "Daddy loves you lots and lots, Lauren." Having said almost nothing yesterday, I witnessed him working hard to pull it together and haltingly get out, "I love you." Thank you, God, for that little gift of speech at that precise moment! Content, all together in our bed, the three of us enjoyed a couple of stories from her "magazine", Little Friend, before she went to bed. For the first time since we returned from
We try to have home health assistants each day from
My days are filled dealing with hospice issues, arranging for home health assistance, finding ways of keeping the girls' lives normal, getting bills paid, fielding numerous telephone calls, co-coordinating guests, etc. Some have asked if I am having trouble sleeping. I'm not. By the time I hit bed, I'm gone. Perhaps, it is merciful. After lunch, I asked Richard if he would enjoy some of Debbie Boskind's fabulous carrot cake. His reply, "Wouldn't want me to waste away." His smile is still my constant companion. He experiences no pain. While he cannot walk or use his hands, speaks only a few words a day, and needs help in every area of life, he appears mostly calm and content. Blessedly, the disease seems to have blunted him against what you might have expected him to demonstrate - feelings of anger, frustration, or depression. We pray for a miracle. With the results of the biopsy and the daily deterioration of Richard's condition, I wonder if the miracle of his life may not be the miracle that we are gifted with. Our 17 years of partnership are a miracle, and I know, with absolute certainty, that we will be fully reunited as a family in heaven someday. Richard and I have never considered ourselves "high holy" people. My gift is not preaching. What we do know is that we are people who love people. So, perhaps, our issues may cause someone to simply affirm his belief in Jesus Christ and accept the gift of salvation. Then, the miracle we receive is of more neighbors in heaven to hang out with than we might otherwise have had. Enjoying time with good friends energizes us. That's heaven to us. We're looking forward to an eternity of relaxed conversation, remembering when, laughing and loving. With the amount of activity in our home Friday, I did not get a chance to share the biopsy news with Richard until this AM. No one should ever have to share such news with a spouse. There is just no easy way to lay this out. When all was said and done, Richard's final response was, "I'm going to go out laughing". And, when our discussion turned to the many people who have visited us and are still planning to come by, he said, "No glum faces". So, our dear friends, Richard's wish for each of us is to celebrate life. We've put up copies of our Christmas letters in case you didn't get one. December 2004 Friday, February 4, 2005 We were told that when we started the Quinacrine (experimental anti-malarial drug that may slow down the progression of CJD) that some patients might get a “burst of energy.” However, we were strongly cautioned not to get our hopes up that the situation was reversing itself. Nonetheless, we have enjoyed Richard making more attempts to speak, being more responsive to us, and his fatigue level being just a bit less. Apparently, this afternoon, he had had enough of napping. I entered our bedroom with his cousin Dallie, who had just flown in from Arkansas, to find him standing in the middle of the room! My startled, “Honey!”, shocked him and he fell. It has been over a week since he has been able to walk unassisted. Just after noon today, I got a call from UCSF. The preliminary report from Monday's (Has it only be 5 days?!? It feels like 5 years.) biopsy was in. The findings were conclusive. The tissue is “classic for CJD”. I truly had myself convinced that I had accepted the diagnosis before today based on the “leading diagnosis” theory at the University of Washington and the “99% sure of what we're looking at” that I was told at UCSF last week. However, hearing the news was like driving a small car, seatbelt-less, full speed into an unyielding concrete mass. I reached the end of the “Road Hope.” Now, we pray that we travel this remaining road with dignity and grace. We search the map for a path of balance of tears and laughter, time for ourselves as a family and the many who love us, faith in the loving God from whom all good things come and the knowledge that we can throw ourselves at His feet in despair, disappointment, fear, grief and doubt. Richard's parents were finally (after 2+ weeks) able to return from out of the country on Monday and were able to visit with him last evening and this AM. We had three sets of two friends each stop by for short visits this afternoon/evening. We used the tranquil times in between these much appreciated visits to carve out some much needed time for just the four of us. This evening as Richard was tucked up into bed for the night, Lauren climbed up and laid down beside him. “I'm going to be Daddy's angel and watch over him,” she announced. Richard has been quite sharp today. His characteristic good humor zinged out at us several times. Watching him rub his hands along the wheels of his chair, I asked him, “Going someplace?” “Apparently not,” he replied. I think the four of us just feel so blessed to finally be all together again and in our own home. Caring for all his needs personally is no longer an option. When we walked through the front door at 6:30 tonight, representatives from a Home Health provider were waiting to meet with me. I also have an appointment with the Hospice folk first thing tomorrow AM. While it is an enormous relief to be done with the grueling marathon of car/plane travels and all the medical work-ups, we now come home to face the horror of this disease squarely in the face. My heart is quietly disintegrating in pain as I watch Richard slip away from us. Our daughters seem to be the one sweet, pure thing that reaches through the haze and fog of what was, just a short time ago, his sharp, focused mind. His one full sentence today was on the way to the airport, "I haven't seen Lauren". In one of his very lucid moments, at 5:50 this AM, when Zeta woke up and joined us in bed, he reached out, grasped her little waving fist and kissed it. This is just so very wrong. Contemplating a future without him is incomprehensible. The injustice of our daughters having to grow up without his wisdom and without knowing this great man that is their father is more than unfair. Thank you, God, that you have promised us the gift of heaven - a life without sickness, a time when friends and family will be reunited, made whole to love and enjoy each other for eternity. As my girlfriend said last week, "I have never longed for heaven as I do right now". The pathology report on the frozen section and biopsy is still pending. Today, we flew Richard's brother-in-law, Mike Mirasol, into San Francisco. He kindly agreed to assist me in getting Richard home from the hospital, care for him throughout the day, and get us safely home to Portland tomorrow. We are extremely thankful for his help as well as that of Lisa Sloop and Kent Chow who took turns flying in to care for Zeta (and Charlene!) while we were busy with tests, appointments, surgery, etc. We have felt and experienced God's love through these and other dear friends throughout this ordeal. As instructed, we returned to USCF at 1.30p, ahead of the scheduled 3.30p brain biopsy. Unfortunately the case before us ran into complications and delayed us almost three hours. Sitting around in the cramped waiting room was very tiring and uncomfortable for all of us (i.e. Richard’s brother Rodney, and our friends Kelly Kilby and Evan Allen, and especially Richard). Two hours later the neurosurgeon reported that Richard had done very well and everything had gone smoothly. The neuropathologist stood by to immediately take the tissue specimens and frozen sections to the lab. We expect a report by Friday or even tomorrow if they can see anything off the frozen sections. After another two hours in the recovery room, Richard finally made it to his semi-private room by 10p. We plan to bring him back to the apartment (so graciously provided by Vernon and Joy Giang) early tomorrow afternoon. The neurosurgeon suggested that we delay our flight back to Portland until Wednesday. However, based on physical exam and the test results we did have, we were told that that the four possible diagnoses were:
The Neurologist told me (Charlene) to “hope for the best but prepare for the worst.” In her opinion, we were most probably looking at Creutzfeldt-Jakob Disease (CJD), a rare degenerative brain disease. The cause appears to be a spontaneous, random mutation of a normal brain protein. UCSF is currently the leading research site on prion diseases. Miraculously, when we contacted them, we were quickly given an appointment with the chief investigator, Dr. Michael Geschwind, who personally examined Richard. After additional MRI studies, physical exams and additional tests, Dr. Geschwind and the UCSF neurologic team confirmed, with 99% certainty, the CJD diagnosis. For complete clarity, Richard is scheduled for a brain biopsy, the definitive test, late on Monday. Sadly, there is no treatment for CJD. It is a very rapidly progressive disease with dramatic deterioration of coordination and speech. The average duration of CJD is four to seven months from the first symptoms (November) with a few cases lasting twelve or more months. UCSF is preparing to begin clinical trials with Quinacrine, an anti-malaria drug, that may slow down the progression of CJD. While we will not participate in the trial, we may opt to use the drug. If he is able to travel, we plan to return to Portland on Tuesday evening. While we begin to prepare for this next step in our lives, we continue to ask for your prayers. Join us in thanking the Lord for the blessings of our beautiful daughters, the seventeen plus years as best friends and husband and wife, and for the overwhelming love and concern being showered on us at this incredibly painful time. We pray for a miracle but do not know what form it will come in. We are preparing to leave tomorrow for the University of California, San Francisco. We hope to narrow down the field of possible diagnosis. While men have lauded these physicians and researchers with earth's highest Nobel honors, we pray for heavenly wisdom for these good people. |
|
Updated 2005/10/02 4.00p |