Year End Wrap Up

Yes, I have decided to do my little year in review post now because I'm going to take the next few days and be away from the computer. In the past few weeks, I haven't been posting as regularly as I had been doing. I know that I am not expected to do anything really but I think I should be posting. It's important for me to continue to tell not only my story but Billy's story as well. It's important that other people know what he went through, what I go through and what my family and husband go through each day. Maybe someone will realize that they're not going through all these rough times alone, that someone out there knows what it's like to deal with the limitations of either Psoriatic Arthritis or Systemic Lupus. I'm going to make this blog more of a priority in the new year. At least I will attempt to do that.

The year of 2006 was supposed to be a better year. I hoped that it would be a better year when the first few seconds of 2006 ticked by. We started off the year 2006 strong, having gotten through Chris' chemo and finally found him to be cancer-free. Billy did go into the hospital for pneumonia but was able to be out right before his birthday. I ended up in the hospital myself for pneumonia towards the end of January/early February. While in the hospital, it was discovered that I had a blood clot in my lung. So I had to start the year with another medication and a whole new set of things to be looking out for, especially diet and sharp objects. Chris and I also faced a new complication when he decided to have chemotherapy treatments to give him a greater chance of the cancer not coming back. He had a bad reaction to the Rituxan, making his hands swell greatly as well as a rash break out over a large portion of his body. That all lead to his being off work for about six and a half, almost seven, months. Thankfully he works for a very wonderful company who worked with us to make sure his time off had been covered by the short-term disability program as well as taking up a collection for us to make sure we had our medications and other things we needed when the money became tighter than usual. I was grateful for all the support from family and friends during that time as well. It's hard to be happy when you have to write checks for five dollars and feel small when talking to creditors. But it has to be done and sometimes the creditors understand. A few went out of their ways to help us with our bills. There were a few happy moments when we were able to get out of the house and have fun. I'm especially grateful for one moment in the summer where Chris and I attended the birthday party for one of our friend's little boys. We were at a local park, having fun, chatting and eating when Chris saw my brother's burgundy Oldsmobile Cutlass go by. At first I didn't think it was him because Mom had been so wary of letting him drive around town in the past few years with his not being strong most days. Billy happened to drive past the spot where we were standing. My heart leapt at the fact he was able to get out and drive his car one last time. I hopped in the car so he could drive by my house. He had been trying to find it on his own but wasn't able. Even though it was so hot outside and he really shouldn't have been driving, I was so happy to be able to give him directions to my house and let him it though it was just the outside. His face was so red from the heat that I offered to run inside and grab him something to drink. Once he took a few drinks, Billy dropped me off back at the birthday party and drove home before Mom and Dad could get a bit more worried than they already were.

The second half of the year 2006 has been the most pain filled, emotional time of my own life. Billy was in and out of the hospital, my health was starting to even out a bit and Chris was recovering from the reaction to the chemo and back to work. Then we had a family situation concerning Chris' side of the family. Because the nature of the situation includes minors, I refuse to discuss it here or anywhere within the public domain. Let's just leave it at the fact Chris and I took a stand against something and there are those on his side of the family who don't agree with the fact that we were aren't going with the flow, so to speak. That has lead to less time being spent with our niece and nephews that we love as much as if they were our own kids. Shortly after this situation took place, we celebrated Halloween without much fanfare just because this year was such a lowkey type of year. The month of November was the worst month by far of 2006. My brother, Billy, was hospitalized as a precaution due to the fact he wasn't peeing. That was a sign to us that his kidneys weren't not working like they were supposed to be working. Over the course of two weeks, we learn that Billy wasn't going to get any better and we had to face losing him. On top of knowing that, my family is dealt a double blow of sorts. My great-grandmother passed away at her home while a second cousin of mine was found murdered in her home. One day after Thanksgiving, I said goodbye to my brother and have spent the last month trying to figure out who I am and what my purpose is now. I'm still writing, having started three different stories and worked on editing my one lonely, finished novel. I have managed to read 61 books throughout the year, even with all the things that have tried to get in my way. I have made some wonderful new friends through support groups and nutured the friendships that I have and cherish. My faith in the love of my friends and family has been renewed and given new life by the way they have surrounded me during the past month.

My hopes for 2007 are simple. I hope that my health and the health of all those I love and care for will be much better. Those who are battling chronic conditions will find reprieve from their hurts and do something they haven't been able to do for a long time. I hope to meet some of my other online friends that I haven't had the chance to meet yet as well as visit with those I have met. I hope to read 100 books next year and finish those stories which I have started. Who knows? I might just send out a story or two and see if someone will pick it up and publish. Most importantly, I want my brother's story to be told. I hope that I can help one person see that they are never alone in what they are feeling, that they have somewhere to turn if they need it. I hope that the world learns to love more and that the violence throughout the world slows down. I know in my heart that there will always be war and violence. Somehow I hope that it will lessen and the news will have nothing to report on except the love and kindness that people show one another. But most of all, I hope to continue this blog and spread information throughout the internet and world about Psoriatic Arthritis and Systemic Lupus.

Have a great and wonderful New Year's Eve and New Year's Day everyone. Be safe and enjoy.
Love and blessings,
Kim

Health Headlines 12/29/06

Involvement Of The Amygdala In Systemic Lupus Erythematosus ~> Click here.

"Botox" Can Ease Writer’s Cramp ~> Click here.

New Modular System Places Handicapped Operators In Standard Auto Seats And Stows Their Wheelchairs While They Drive ~> Click here.

Gene Mutation Which Prevents Carriers From Feeling Pain Discovered By Cambridge Led Team ~> Click here.

A New Way To Stop FoxM1 Promoting Tumor Growth ~> Click here.

Genetic Mechanism Helps Explain Chronic Pain Disorders ~> Click here.

MabThera(REG) Helps Patients With Lymphoma Stay Symptom Free And Live Longer ~> Click here.

Longevity Gene Delays Alzheimer's And Preserves Faculties ~ Click here.

First Familial Pancreatic Cancer Gene Identified ~> Click here.

Herceptin Plus Chemotherapy Significantly Increases Disease-Free Survival In Breast Cancer ~> Click here.

New Imaging Compound Shows Promise For Early Detection Of Alzheimer's Disease ~ Click here.

Celebrex Approved To Treat Juvenile Rheumatoid Arthritis ~> Click here.

Androgen Therapy May Slow Progress Of Alzheimer's Disease ~> Click here.

Happy Holidays

Just taking a quick moment to stop and wish everyone a Happy Holiday whichever celebration you are observing this season. I wish you all the warmest love, joy and laughter this season that lasts the years to come.

I'm going to be with my parents today. I didn't fall apart yesterday as it was the one month anniversary of Billy's passing. I did cry when the time he passed came around. But for the most part I felt comforted by his pictures and the little things that remind me of him. There's so much of Billy wherever I look during Christmas time because it was his favorite holiday. But I will write more about that later tonight.

Love and blessings to all,
Kim

Halfway to myself

It's turning colder again. The weatherman is talking about rain and snow that will come our way later in the week. Then it's supposed to warm up again. This type of weather is so good for colds and even the flu to creep in and make life miserable for people. Hopefully the only thing I'll have to worry over would be how much pain I'll be in instead of whether or not I'll get sick. I have a headache today. It didn't start until about an hour ago. Plus my feet are really bothering me. They're super tender for some reason. I hope I will be able to go over to my mom's later tomorrow. I promised her I would and I don't like to break my promises if I can help it. Today wasn't that bad of a day, really. One of the packages my mom ordered for me arrived yesterday so I had some nice, new clothes to wear that actually fit and look nice on me. So I washed them as well as a couple other loads of laundry. Chris didn't have to work yesterday because the factory was running low on parts. We came home after dropping Mom off at home and took a nap. Then I started the laundry while he worked on washing some of the dishes. I hope that with his time off due to the holiday shut down, we can get the house cleaned. I can only do so much on my own.

Today after I picked Mom up from work, we stopped by a little, family owned jewelry store to see if we could find some gifts for a few of the nurses who were extra special. They were either those that Billy cherished or they did something extra special the day Billy passed. Mom and I both agreed that we'd just let ourselves be guided by Billy. It didn't take long before we found what we were looking for. I drove Mom to the hospital so that we could give the gifts to them. It was the first time I had stepped into the hospital since Billy passed away. It didn't feel odd or anything like I thought it would be. It was more the people making me remember and feel a bit sad. I guess I don't have any excuse for not going to get my protimes done, huh?

I'm going to keep this entry short. This headache is really starting to hurt so I'm going to go lay down for a little bit. Have a wonderful evening/morning everyone.

Love and blessings,
Kim

Health Headlines 12/19/06

New Hope To Lung Cancer Patients offered by Drug That Chokes Off Tumor Blood Vessels ~> Click here.

GSK Begins Phase III Trial Of Breast Cancer Drug Tykerb For Early-Stage Breast Cancer ~> Click here.

Number Of Direct-to-Consumer Prescription Drug Advertisements Reviewed By FDA Has Decreased, GAO Report Finds ~> Click here.

American Diabetes Association Urges New Congress To Address Inadequate Research And Prevention Funding In 2007 ~> Click here.

Macular Vision Loss In Diabetics Slowed By Drug Treatment ~> Click here.

Lapatinib Shows Promise As Therapy For Inflammatory Breast Cancer, Study Finds ~> Click here.

Linchpin Discovered In Insulin Metabolism ~> Click here.

New Study Demonstrates Efficacy Of Pfizer's Aromasin For Early Breast Cancer ~> Click here.

Molecule Linked To Autoimmune Disease Relapses Identified At Stanford ~> Click here.

High-resolution Imaging With Contrast Agent Shows Promise In Osteoarthritis Research ~> Click here.

Health Tip - Oil And Water Mix For Skin Care Treatment In Winter Season ~> Click here.

Sunshine and raindrops

I'm so tired today. I know I've said that many times before. It's still true today. I have tried to get sleep but I still feel like I haven't gotten that restful sleep that my body needs so that it doesn't hurt so much. The weather here in Indiana has really been mild, almost spring-like. We've had temperatures in the 60s even! Later this week, there's supposed to be a cooling down but I don't think we're going to have snow for Christmas. I might get surprised but I don't know. I think January and February may prove to have many snow days in them. Just a feeling I have. Things here have been going well for the most part. I've had some good days and some really rough days. It seems Fridays are the hardest for obvious reasons. It's going to take a little more time for me to be able to go on without thinking it's been such and such amount of time since Billy died. Then again, it still seems like a dream to me. I sometimes wonder if this is some kind of nightmare and I will wake up to hear him on the phone.

I talk to my mom a lot more nowadays. We've skirted around the subject of Billy being gone a few times. I know she cries at night and sometimes all day for him. She knows I do the same thing at times. And yet, we both try to be brave for the other. I guess that's part of the legacy Billy left behind. Caring for others before ourselves. I went to her house today. We were going to finish up filling out the thank you cards to send to those who came to Billy's showing and funeral service. Instead we went online and bought some gifts for the nurses at the hospital to show our appreciation for all the care and love they gave to Billy. We also went to a site for the Dorough Lupus Foundation. It was started by Howie Dorough from the Backstreet Boys in memory of his sister that passed away from Lupus. They have some wonderful items you can purchase and the proceeds go to research for a cure. There is also a petition you can sign to get the Post Office to create a charity Lupus stamp. I'm going to be adding links over the next few days so be sure to check tomorrow or Wednesday for them. Then, please, check them out. There are a lot of people who are affected by Lupus but they just don't know that there are others out there who have been through what they are going through. They're not alone.

After deciding to wait until tomorrow to finish up the thank you cards, Chris and I left Mom's house and drove over to the graveyard. Until the insurance is settled, Mom and Dad have to wait to get Billy a really nice grave marker. For now there's a bronze temporary marker to mark his grave. Its funny that he's only been gone a day over 3 weeks and the grass over his grave has already started to take root and blend with the grass surrounding the grave. It's almost as if the ground had never been disturbed to begin with. I know better though. I know he's gone and where his body lies. Sometimes I still close my eyes at night and see him laying in the casket or him during his final moments. Chris thinks I'm rushing to "be okay" with things. He thinks I should take as long as I need to deal with the loss and trying to find my identity once again. I will forever be his sister but now I need to find out me without Billy as part of that identity. I started writing to him the other day. I was writing a letter to my sister in Texas and just decided to write him. I mentioned the fact I was writing him letters to a few people. They've encouraged me to keep doing it if it helps me to come to terms with things. One said I should try to write a letter each day or every other day for about a year. Then try to put it together in book form. I don't know about that. I know I want the world to know how wonderful Billy was but I don't know if that's the right way to go about it. Writing the letters has been helpful so far. I guess I'll keep doing them until I feel I don't need to any longer.

I'm still behind in emails and catching up my journal/blog. I shouldn't push myself to catch up but I'm trying to get into a new routine of sorts to get myself onto a schedule. Without the wonderful, loving and forgiving friends of mine, I wouldn't know what to do. There are moments when I'm so overwhelmed with my emotions and one of them will call me or I'll get something in the mail from them. You guys know who you are. Please know that I love you with my whole heart and I hope to someday repay you in love and kindness what you've given to me. Take care of yourselves.

Love and blessings,
Kim

Health Headlines 12/18/06

CuraGen And TopoTarget Announce Expansion Of Belinostat (PXD101) Clinical Trial In Cutaneous T-cell Lymphoma (CTCL) ~> Click here.

Kosan's Hsp90 Inhibitor, Tanespimycin, Shows Promising Antitumor Activity In Phase 2 Trial Of Patients With HER2-Positive Metastatic Breast Cancer ~> Click here.

Successful Lung Cancer Surgery Not Enough To Break Nicotine Dependence In Many Smokers ~> Click here.

Drug Combination Proves Effective Against Myeloma In Phase I Trial ~> Click here.

New Vaccines Against Cervical Cancer Major Opportunity For Developing World ~> Click here.

Nation's Largest Patient Group Focused On Depression Responds To New FDA Recommendations On Antidepressants ~> Click here.

Cancer Gene Mutations Not Uncommon In General Population ~> Click here.

Alzheimer's Vaccine Under Development ~> Click here.

MabThera First-line Treatment Helps Patients With Indolent Lymphoma Live Longer ~> Click here.

Protein 'Fingerprint' In Spinal Fluid Could Spot Alzheimer's Disease ~> Click here.

Gene Discovered By Researchers Tied To Pancreatic Cancer ~> Click here.

Longer Use Of Anti-Clotting Treatment With Drug-eluting Stents May Reduce Risk Of Death ~> Click here.

Lenalidomide Enhances Effects Of Monoclonal Antibodies In B-Cell Lymphoma ~> Click here.

New NICE Guidance Increases Insulin Options For Some People With Diabetes (type 1 And 2) ~> Click here.

A New Gamma Camera Technique For The Detection Of Small Breast Tumors ~> Click here.

New Study Shows Efficacy Of AROMASIN On Early Breast Cancer ~> Click here.

Genes That Allow Brain Cancer-Causing Stem Cells To Resist Treatment Identified ~> Click here.

Wrongful-Death Lawsuit Filed Against Ortho Evra Manufacturer Ortho-McNeil ~> Click here.

Researchers Find Two Biomarkers With Potential To Predict Breast Cancer Spread ~> Click here.

Tears and smiles

Can it really be two weeks already? Has time flown by? Just doesn't seem right that the world has continued turning. And yet I know that there's not much that would have stopped the world or time from going on. I wish I could have stopped it though. I wish I could've had a remote like the one in the Adam Sandler movie, Click, where I could have frozen time and rewound the events that have happened. I just want one more day, one more hour, with Billy. To tell him again that I love him and that I will miss him like crazy. Now I understand the depth of grief. I can clearly understand stories such as "The Monkey's Paw" and others that deal with a magical object granting wishes. I can see how grief would drive someone to make a bargain he or she would later regret. Just like in the television show Buffy the Vampire Slayer, Buffy found her mother had passed away. As a result of grief, her younger sister tried to return things to the way they had been before the mother's death but casting a spell to return their mother to them from the grave. Though I know it's not reality and couldn't happen that way, I can understand the need to try and bring the person back. I can understand how deep the need to touch the person once again, hear their voice, or just be in the presence of the person who's gone on. In all honesty, I was glad that I was able to talk to him the day the doctors put him on the ventilator. It's given me a bit of comfort to know that we were laughing and in good moods tinged with worry that day instead of being grumpy or having a bad outlook. I'm almost positive that it made him feel a bit more at ease with everything to know that someone was still there and wanting him to be happy even while facing something so serious.

I had a request to give a brief history on Billy's struggle with Lupus. In Late December of 1994, my brother, Andy, and I had a battle with the flu. A few days after I had recovered and Andy began his own recovery from the flu, Billy started to show signs of not feeling well. It was assumed that he was just coming down with whatever we had gotten over. After Mom came home from work, she and Dad took Billy out to the hospital. It was about six hours or so later when she came home to tell us that Billy was way sicker than what we thought. He had a disease called Lupus. It made his lungs rip and bleed on the inside so he was really choking on his own blood at times. Over the first five years of him having to deal with the hospitalizations and getting the combination of medications just right, we all had gotten used to seeing him have a Lupus flare where he was would be just fine, talking away, and then the next minute he's coughing up large amounts of blood. Then everything began to change between years six and ten of Billy's living with the Lupus. It didn't seem to flare up as bad as before. Maybe the damage had already been done by the earlier ones. He didn't really cough up that much blood anymore but had what he called "the gurgly feeling" in his chest, almost as if he could hear the blood or fluid in his lungs bubbling whenever he breathed deeply. Towards the end of his living with the Lupus, I'm glad to be able to say that he never really had many Lupus flares. It did seem as though there were other things that would make him have to spend weeks and sometimes months in the Intensive Care Unit of the hospital. He would have pneumonia or kidney failure or something along those lines where it became apparent to both my parents and myself that we were fighting a losing battle for the most part. That's why when we were faced with the decision to let Billy go or keep him here to live on machines the rest of his life away from the things and people he loved the most, we had to let him go.

It still doesn't seem real some days. I will be honest and admit that I haven't been sleeping at night. Even after I take the medications that I've been given, sometimes I wake up just a couple hours after falling asleep. Chris said the past few nights I have also had some nightmares where I whimper in my sleep. I don't remember any of the dreams when I wake up. I don't know exactly what's going on while I'm in Dreamland but I sometimes wish I did. There have been times in the past couple of days when I just haven't felt like I was present for a lot that has been going on around me. I sleep during the afternoon instead of at night and I forget to eat a lot of the time. There's a part of me somewhere inside that knows this is rational greiving that will pass only with the passage of time. I've been staying away from the phone and the computer. Mostly I've been writing and reading. I know it seems selfish but I just want to stay in my own world for a little bit. I've gotten 60 books read throughout the year so far. Still have a few weeks until the year officially ends so I just might get one or two more read. I've only been writing a page or two here and there. At least it's something, I know. I just wish I could do more. I truly want to write Billy's story. I just can't figure out how it would be best do that. Nonfiction? Fiction? I dunno. I guess it's just one of those things I'll have to work with a bit and figure it out when the time comes. I'm off for the night. I'm going to play for a little while and then read some more. Take care out there. I do appreciate each and every one of you.

Love and blessings,
Kim

A Little on the Tired Side of Things

I know I am supposed to make these posts each day but I just can't. Most of the time I'm thinking of anything and everything else to do other than write a post for my blog. It's not that I think the blog posts aren't important anymore because they are. This has become the place were I'm more open than others and right now delving into that arena of truth hurts more than any physical pain I've ever experienced. Today wasn't so bad a day. The temperature turned out to be a bit warmer although it's supposed to drop sharply overnight. It's possible we'll have some flurries and a thin layer of snow by morning. Right now, the wind is picking up so I believe the drop in temperature has begun. Today also was an okay day for me because I was able to get through the day without too many tears. As Christmas season nears, I know it will be a little harder to get through the day. Christmas was always, always Billy's favorite time of year. He loved the whole idea of Christmas from the Christian standpoint (it being the birthday of Jesus and the ideology that goes along with that) as well as the magical way the houses glowed against the whiteness of the snow and the dark night sky. It was one of his dreams to someday live in a house and decorate the outside with lights, holly wreaths, and other decorations. I'm glad that he was able to have two Christmas seasons in which to do exactly that. As greedy as it sounds, I wish he had so many more.

I've been hiding online alot. Part of me wants to reach out to others and make myself not talk about Billy all the time. Like some sort of distraction. Yet when I start to talk with others all that comes out is about Billy. How does a person not talk about someone they loved so much when the person's only been gone a couple of weeks? I know it doesn't seem right to almost blantantly ignore those who care and worry about me. But what can I say or talk about that doesn't include Billy? He was my whole world for nearly two years as I lived in a sort of limbo between being married and staying at Mom's place to care for him after a really rough time in the hospital. The poor guy had to learn to walk and care for himself all over again and needed someone to help him. Though our youngest brother was living at home at the time, he couldn't give Billy what was needed. Thus I stayed five days a week with them and went home for a day and a half to take care of things at home with Chris. It was rough and trying at times but I did it. I don't regret that. Even after I got worse and had to basically go on bedrest for a few months, Billy and I talked every day on the phone. It was something we have done until he was taken to the hospital and with his passing. I still call Mom every day to check on her but also to keep that small part of the routine. It's almost like a paradox. I want people to check on me, to make me smile, to help me through this rough time and yet I don't want people to feel obligated to do that every thing. I don't want to bore people with every little thing that I remember that Billy said, did or loved. As much as I love my friends and I know that they love me, I don't want to hurt them or bore them with my grief when it is almost like a hot a flash, coming or going with such ease that it often takes me by surprise.

This whole world is new to me. I feel like an infant born into a world where things seem cold, distant and leave me with a yearning for comfort and love though it is all around me. My rational side is starting to win out over my emotional side. I give myself the freedom to cry when I need to cry without berating myself inside. I don't hide how deeply it hurts to even think about Billy or his last moments. That hour, no matter how long it seemed at the time, is something I will never, ever forget. The waiting for his chest to become still, the gasping of his final breaths, the raspy way that his once melodic voice sounded after they took the tube from his throat and asked for some spray to numb the nerves so he could tell us goodbye. All of it plays in my mind. The last vision I have is him laying in the casket as I placed a necklace that meant a lot to me onto his chest before we took him to the graveyard and then the casket was placed into the ground. I know his body is there. It's the memory that never leaves me. I know his body is in that ground, cold and uncaring, locked within the gentle yet firm grasp of Mother Earth. I know that the part that made Billy who he was, his love, his beliefs, his soul, is no longer here and he is no longer feeling pain or hurt or suffering so that others can smile. If my writing makes Billy out to be a saint, well, he really almost was in many ways. Billy's miracles were sown in small seeds of unconditional (and I do mean unconditional) love and took days, weeks and sometimes years to bloom within a person. I know I had more opportunities for Billy to toss seeds my way. Maybe that's why I want to make others laugh and always have time to listen to someone. Well, before this reason selfish phase. I want the world to know about Billy, to know about his disease, his struggles, his triumphs. One day soon, I'll write the foundation of his story. Maybe I already have and just don't realize it. I just want the world to know.

I just want to apologize to my wonderful friends out there. I love you all so very much. I'm sorry that I haven't been talkative one moment and then don't want to let go of your ears the next. Please know that my heart is comforted by your words, emails, and cards. I just need some time to deal with some things on my own. Don't give up on me just yet. Take care of yourselves out there.

Love and blessings,
Kim

Coming to Terms Part 2

It's so cold here in Indiana that I now believe it's time for winter even though the official start of winter is still a couple weeks away. There is to be a slight bit of a warm front coming through our area but I don't really think it's going to matter really. I suspect we'll have some even colder days in the weeks to come. Really wouldn't surprise me at all right now.

It's been a tough couple of weeks. I know that I wrote about Billy's last days in my last post. I plan on going over the events that happened after his passing in this one. It's important to me to document how I felt and what I have been up to, just as I have been doing throughout this blog for the past year. When the time comes to write Billy's story, I know this blog will play a large part in that story because it holds my words and feelings about the events. More than likely I will return to the regular format of my posts because I feel I need to have that small bit of structure to help me deal with the changes that I am having to make in the routine of my days. Billy was a large, large part of my life and the things I did throughout the day. Even now it's hard for me to go through the day without wanting to pick up the phone and call him just to see how he's doing or talk about something I have seen on tv or online that I think he'd enjoy. I catch myself picking up the phone, finger ready to press those buttons, before I remember he's not there anymore. Or I'll be talking about plans and want to include him but I can't. I know in my rational part of thinking that it will take time. I just have to be willing to allow myself the time to cry and grieve so that I can move on to honoring him.

The day that Billy died, I was upset and yet relieved at the same time. My mother and I had both been in agreement that we thought Billy wouldn't be coming home this time around. So in a way, we were preparing ourselves for the eventuality of his passing away. And yet on the morning of November 24th, it was still a shock and a complete world change nonetheless. After his last breath, the nurse and respiratory technician led us out of the room so they could clean his body before we said goodbye one more time. As I sat out in the waiting room, I heard the soft, tinkling music that the maternity ward plays whenever a baby has been born. To me, it confirmed that for every life that ends on this earth, a new one begins. Whether one believes in reincarnation or whatever their faith's version of life after death, there is always a cycle of birth, death, and rebirth. Hearing those few, soft notes made me smile because I knew someone was going to have precious memories to savour through rough times. A short time later, the nurse returned for us. My family and I walked into the room where Billy had spent the final weeks of his life. All the machines that prolonged his life had been removed, the tubes and IVs taken from his body. He had been cleaned as best as the nurses could through their own tears. Many of the nurses on several floors of our local hospital have attended to Billy's needs at some point over the past eleven years. The nurse that sat with us told us what would happen next and helped to arrange a meeting time at the funeral home.

The day after Billy's death, Chris and I met Mom and Dad at the funeral home to help make the arrangements. I knew Mom and Dad didn't sleep the night before. I could see the dark circles under their eyes as well as see the sadness, longing and grief reflected within thier eyes when they looked at me. As we stepped into the funeral home, I remember feeling as though I was going to be sick all over the pale green carpet that lined the floors. We were all led to a conference room where the wonderful and genuinely sincere funeral director laid out the options from which we could choose the most appropriate service. I was able to find the two Metallica songs that I had promised Billy we would have played at his service no matter what and they were very wonderully done with cellos by classical musicians. The public viewing was set for the following Monday with the funeral services Tuesday (11/28).

I was glad to have visited my family doctor before Billy's actual passing because I truly needed the medication that he prescribed me. I wasn't really able to sleep without it. On Monday, Chris surprised me by meeting my best friend whom I call a "sister" from the airport in Indianapolis. When Chris called everyone the day Billy passed, she made plans to fly here to be with my family and I throughout everything. It was a very welcomed surprise even though I wish it had been under different circumstances. Her being here helped me to focus a bit more on something other than the obvious. There were a lot of people who stopped by the funeral home, many more than I thought even knew who Billy was. There were some people that I didn't think even cared about Billy or my family. I was glad to have had those pleasant surprises. The funeral services on Tuesday were a little harder to get through. The eulogy given by Billy's pastor was beautiful and gave my mom and dad a message of hope. They truly needed something to hold onto and I'm glad that they have it now. When I saw a couple of people at the funeral services that I never expected them to be there, I broke down and cried. I truly feel loved to know that people would set aside an hour to help me and my family through some of the hardest times.

We followed the procession out to the cemetary. Billy was placed just a few steps away from where my maternal grandfather and great-grandmother lay. There is also a large statue of Jesus looking over my brother's resting place. Mom and Dad decided that is where they feel most comfortable in placing Billy's grave as well as their own next to him. Mom and I walked behind the pallbearers that included my other younger brother, Andy, as well as my father and Chris. Once the casket was set onto the lowering device, we sat on the fabric covered folding chairs as the pastor read a few more passages from the Bible and prayed. There was the awkward moment of silence before the funeral director plucked roses from the spray on his casket and handed one to each family member. It was then that we hugged those who had stayed to the very end of the service and thanked them. Mom and Dad left the cemetary to pick up the flower arrangements from the funeral and take them to the hospital as well as the doctors' offices of Billy's doctors. Chris, myself, Andy, and close family friend that we all called our adopted brother, Charlie, stayed behind as the casket was lowered into the grave. Chris put a handful of dirt onto the grave. I tossed in a few rose petals after I kissed them goodbye. Charlie tossed in a rose. I'm not sure what Andy did because I had turned from the grave. We all hugged, made promises to keep in touch, and went our separate ways for a while. Chris and I took my "sister" to lunch before she was to catch her flight back home to Texas. We arrived home after the sun had gone down. At the end of the day, I slept without the aid of the sleeping medication because I was exhausted mentally, physically and emotionally.

The last week has been a time of adjustment and learning. I am still having trouble sleeping at night. I keep seeing Billy's face and then the knowledge that his body is in the ground makes me want to go and see that he is warm. Even though I know he's no longer alive, I still want to take care of him and make sure he's alright. I have moments where I miss him so bad that I get sick to my stomach. I cry until my eyes burn and tears refuse to squeeze from them anymore. I sob until the back of my throat aches and I can't breathe steadily, only in gulps. Chris holds me and lets me cry or leaves me be for a little while until he knows I need him. I think I've heard every cliched saying possible in the last few weeks, but you know, they still comfort me. No matter how many times I hear or read an email where someone says they're sorry for my loss and they're praying for me, it comforts me. Guess I'm at a point where I'll take what I can get. At least for now.

Love and blessings,
Kim

Coming to Terms

It has been a really long time since I've posted here. To be honest, I've been avoiding this outlet for a while. I just know that I'm far more truthful here than in other part of my "online" life because this blog is another part of me. I talk as freely here as I would do if I were talking on the telephone. Part of me doesn't want to acknowledge the truth of recent events. To stay within the dark clouds of memories would be lovely and yet I'm pulled out of the clouds time and time again.

This time last week, my family had to let go and allow my brother, Billy, to pass from this earth into the next part of his journey. He was takne to the hospital a month ago because he was just so tired and couldn't breathe well. He was put into the Intensive Care Unit of our local hospital for observation. The next day my mother called me to ask if I would give her a ride out to the hospital earlier than the time we agreed upon the night before because the doctors were contemplating putting Billy onto the ventilator. Though it was a machine that we are very familiar with from years of past useage, we were worried about this time. Mom and I arrived just before they were getting ready to place Billy on the ventilator. I was able to talk to him for about twenty minutes. Then the doctors came, explained their reasons for putting Billy onto the ventilator, and he was put into a sort of medically induced coma so that he wouldn't fight the tube that they had to put down his throat and into his lungs. About nine days later, my family and I were faced with a harsh reality that we truly had been dreading for the past eleven and a half years. Billy developed pneumonia while on the ventilator, became septic because of a rampant infection within his body and began to show symptoms of a conditon called Adult (Acute) Respiratory Distress Syndrome. This was something that no one in our family had heard about before. Lupus and complications that come with it were nothing new to me or those in my family when it came to dealing with Billy's health. The doctor explained to us that this new diagnosis could affect anyone and the result was usually the lungs becoming hard like cardboard and unable to move. That allowed the carbon dioxide and other toxins to increase in number throughout the body. Without the help of the ventilator, a person would die.

Unfortunately, Billy wasn't getting much better. Because he was so weak and so sick, he required the ventilator, a 24 hour dialysis machine and feeding tubes just to survive. When his pulminologist returned from vacation, we learned the truth of the situation. Billy did have a choice. He could come off the ventilator, slip into sleep, and not wake up. Or he could have a tracheotomy done but his life would consist of the machines in another hospital or longterm care facility a long way from home. When the day of the decision came, Billy agreed to the trach at first. It was a decision that shocked both Mom and me. Billy had steadfastly said no to a trach for ten years. It was something he wouldn't consider ever, no matter if it would save him or not. As Mom and I stood in his ICU room, it dawned on both of us that Billy made that decision for us. He would suffer and be in intense pain so that those he loved would not suffer. The weight of that thought almost sent me to my knees. I remember gripping the rails of his bed as a nurse stood beside me. I asked him countless times if he was sure, if he was doing that for himself and not for us. I told him it was okay to be tired and want to go on to Heaven. My mother and father had done the same as well. I know that my other younger, Andy, had spent time alone with Billy and I'm sure he told Billy that it was okay to go as well.

It took Chris, my husband, coming to the hospital and talking to Billy, man to man, and the nurses who were close to Billy talking to him as well to let Billy know it was definitely okay for him to close his eyes and sleep forever. A few hours after he had said yes to the trach, the surgeon who would perform the surgery stepped into Billy's room. It was then that Billy said no. The nurse present as well as the surgeon asked him if he had changed his mind. Billy nodded that he had. He wanted to go to sleep and slip into Heaven to never hurt again. That was on a Wednesday, the day before Thanksgiving. On Thursday (11/23/06), my family and I went to visit Billy and spend as much time as possible with him. He was awake and writing notes to Mom and the other nurses. He truly wanted to have the ventilator turned off that day, but he agreed to wait until Friday morning. I remember Mom and Dad went home for the evening to take care of Dale, Billy's dog. Andy, Chris and I all stayed the night at the hospital. I knew that if I went home, I wouldn't wake up in enough time to come out to the hospital. So we camped out in the waiting room.

I honestly don't think I will forget the events of that morning for as long as I live. I checked on Billy a couple of times. Both times he was sleeping almost peacefully. Mom and Dad came in around 6am, a little upset that none of us had gone home except for themselves. That didn't last too long though. As the hour crept closer to when the doctor would have finished his rounds, I remember feeling so sick to my stomach. The nurse came out around 9am or so to tell my mom and dad that the dialysis machine needed to be changed and whether or not my parents wanted to go ahead and take Billy off the ventilator. The doctor gave his okay to everything that my parents wished. Soon we were ushered into Billy's ICU room. We all gathered around him just after the respiratory technician removed the ventilator. He was able to speak to us before he asked to be given the medication to go to sleep. As he slipped into sleep, we all waited. The nurse increased the medication every so often to ensure that Billy wasn't in pain. At 10:27 am, Billy took his last breath. We kissed him goodbye and clung to each other for a few minutes before leaving the room so that the nurses could clean him and remove the IVs and tubes.

I'm going to stop writing at this point today. I pushed myself to write this much because I didn't want to leave the story of Billy's last days unfinished, even a little bit. There's so much more that has happened in the past week or two that I will try and post again tomorrow. I'm just trying to take things one day at a time. Please, hang in there with as I adjust to a new routine. If you get a moment, tell those you love just how much they mean to you. Tomorrow isn't promised to us.

Love and blessings,
Kim