Monday, March 21, 2011

The Final Entry

I've been putting this blog entry off - I mean, how exactly does one end a 4-year documentary about a loved one, that had so many followers? Should I be brief and to the point? Should I reiterate everything? CliffsNotes, maybe? This is the end of a big chapter in my life. My memories, good and bad will remain with me obviously, but my journal is at a close. This will now be made into a book for Katie, my little princess warrior.

Katie was only 8-years-old when Tom was diagnosed with cancer. She has been through more in her life already, than most adults my age (I'm 41). She has witnessed a lot of raw, scary, painful times in the lives of us three. She has been there, a rock for Tom and myself. I have found a great deal of strenth through her. Many times she has been the only source of joy in my life - a little star in a big, dark, night sky. She is an amazing child and I'm positive that she will use her emotional strength to make a difference in many more lives. I am so very proud of her.

Tom, as you know had a horrible ending to his life, and I don't care to dwell on that. I do want to express my feelings for him. When we met, we were so carefree and happy. We knew immediately that we were a perfect match. Tom proposed to me six weeks after we met, and we were married seven months later (he was 26, and I was 22). Being so young and having known each other for such a brief time, the odds of a successful marriage were certainly against us. We didn't pay attention to that negative way of thinking, and instead we put ourselves through college, bought our first house, and then in year seven of our marriage we decided it was time to become parents. Katie came along and life continued perfecty over the next several years, in the fast lane of happiness.

Tom was successful in his career - always wanting to return to the office and work alongside his colleagues. He thrived on riding his bicycle and working on his "machine", as he called his computer. He was such an intelligent person (nicknamed the 'human encyclopedia' by my brother), seeming to know a little something about almost everything. He was a good father, always trying to pass on his hobbies and interests to Katie. He was a loving husband - I know he would have done anything for me. In the end, not only did he and I beat the odds of having a long marriage, but this would have been year 20!

Cancer is not only a sickness to the body, but it can spread to other areas of life, namely financial, emotional, and psychological. If I could give anybody a word of advice, should this happen to you and your loved ones, it would be to realize that it's difficult - there will be times when you are: reminescent of the old life and feel cheated, when you don't get along with your loved one, when you get along perfectly, when you worry in the middle of the night, when you worry during the day, when you can't believe how many people reach out to you, yet you still feel all alone. The illness may not get better, but it's out of your control. You can't obsess over "what if". All you can do is remain strong, try not to be angry, cherish the last minutes, grieve, and try to move on in a positive direction.

I love Tom and I miss him so much. I feel his presence. I will keep him alive in my mind and heart, and that of Katie's, as will so many others. There is no other like Tom Carter.

When I started my blog, as you will see in the first entry, Tom suggested I call it "A Voice From Up High", as he said that is how he perceived me - comforting, caring, and looking over him. Who knew that in my last blog entry that I would be reassigning that title to him, for he is now our Voice From Up High.

Sunday, March 6, 2011

The Eulogy

My good friend, Carla offered to provide the eulogy at Tom's memorial service. She exceeded my expectations, and I wanted to be sure I shared this beautiful sentiment with you in my blog. Thank you, Carla.

The challenge for me in speaking about Tom becomes how to cover all the things that I could say about him and not keep everyone here for days. Tom was a true Renaissance man who never ceased to amaze me with his bank of knowledge. I learned many things from conversations with him, including an appreciation of his authenticity as a human being in his actions towards others as well as the deep, personal, level he could take a conversation. Tom had so many interests, he loved his family, he enjoyed his work and the people he worked with, and he enjoyed his successes as a provider. He was creative, adventurous, athletic, a good cook, he had a spiritual side, and…he was easy on the eyes!

One golden thread in the tapestry of his life that we shared was a common interest in music. In many of our conversations, there was a musical component. We both enjoyed all kinds of music, along with playing the guitar. One great memory I have is when my husband and I had an alley party. My music partner, Marie and I decided we would provide the music, so we went about setting up amps and mics. Tom, Lisa and Katie came over and I had a couple of extra guitars out for anyone who wanted to jam. Marie and I had some music that we wanted to do and I asked Tom to join us. Much to my happiness, he jumped in and we had a great time singing and jamming together until dinner was served. Personally, I had visions of a family band in the makings. Shortly after that evening, Tom bought a Martin guitar, much to my envy and joy. He said he had so much fun that evening that he wanted to get back into playing.

Recently, I had the joy and opportunity to see Katie in a chorus concert at her school. She did a short solo and I became so excited at the beauty of what I heard from her, and her obvious interest in music. Afterwards, we went back to the house and messed around with a song that Katie liked. I promised to work on the guitar part so we could do the song together.

Two Sundays ago when I was again at the house, Katie and I worked on the song and got it to a level where we thought we could perform it for Lisa and Tom. We gathered with them in the bedroom and commenced to doing the song. It was a very special moment with smiles and tears from us all.

For me, the beauty of the moment was the realization of a reciprocation of a similar event nine years before, when I watched Tom bring a new meaning and level to singing sweet songs to his baby girl. Katie was between three and four when I stopped by one night for a visit. Beauty and the Beast was a biggie in Katie’s world, and Tom invited me to stay to hear the song from the movie, that he and Katie had worked up. Well, let me tell you, I was mesmerized….Katie dressed up in her princess outfit, crown included, as well it should be. She sat with regal countenance on her thrown, which was a bar chair, and as the music began, a demure smile crossed Katie’s face as she got into her princess character. Tom, in his character as “The Beast” began singing to her passionately, leaping across the room, kneeling before her, hands clasped in a pleading way, up again, across the room, twirling, singing to his little Princess, and it went on like that until the end of the song. Who would have thought that nine years later the roles would be reversed and his baby girl would be singing to him and creating an equally special moment?

I spoke to Tom of this memory last Saturday during some alone time that we had and it brought a slight squeeze of hand and an ever so slight downward movement to his lips which was an attempt at a smile, as he shared his happiness in this memory.

Thank you, Lisa, for your courage through this. I watched your sweet, gentle, loving care so many times and you have gained Heroine status in my eyes. You were certainly one of Tom’s main angels! Thank you for keeping the blog that became increasingly important to so many of us in keeping up with what was happening with Tom.

Thank you Katie for being his sweet baby and I will pray that your memory bank stays alive with good loving memories that you have had with your dad. You are also one of my heroines.

Thank you, Mr. Carter for having such a wonderful son who was a testament to you and Tom’s mother, as parents.

I send my condolences to his sisters and to his brother in their loss of Tom. I don’t think that time heals our wounds and emptiness, but I do believe that time simply gives us a chance to adapt to something new as we go forward.

To all of us who have been enriched by knowing Tom, we have a great example of high standards to aspire to and we have all been blessed by having him touch our lives in whatever way he did.

Monday, February 28, 2011

Tom the chef

I found this picture of Tom on my brother, Kevin's Facebook page. I think Tom was preparing chicken parmesan. Here is a message I found from Kevin:

Thoughts on the best man I know.
My brother in law died this morning. I have had very few positive male role models in my life. He was the best. When I was a kid he taught me about art and computers. As I grew up he showed me what it means to be a man. I learned more from him than he could have known...

The Funeral

Over a week has now passed since Tom's service, and I'm still a little numb. It was so good to reunite with so many friends and loved ones. You all helped me stay strong, and keep a smile on my face. The messages delivered to everyone from Carla, Elise, John, and Pastor Dale were touching. I heard that several others wanted to share some feelings/memories, but I guess they were not noticed in time. Katie and I were truly touched by the service.

It was so nice to arrive home from the church to a house full of family, a lovely spread of food and spirits provided by my wonderful neighbors, floral arrangements everywhere, beautiful and mild weather, Grateful Dead music playing on the deck. Tom would have had such a terrific time. I could imagine him telling stories, smiling, laughing, eating, and enjoying a beer. He certainly would have enjoyed the karaoke that spontaneously took place later on, thanks to Katie setting it all up. He always loved belting out those karaoke songs!

I'm missing him so much...reminded daily of little things I loved about Tom.

Memories from Elise

Here are a few more memories about Tom - these being from his sister, Elise:

*Grandma Libby took us to Orlando to visit Disney World & Sea World on two separate occasions. Mom and Dad did not go with us on the first trip; only the second one. The first of the two trips to Florida was just Grandma Libby and 5 kids. She was a brave woman! Grandma was always worried about losing one of us when we went places and there was always, always, a centrally located spot designated as the "if you get lost or separated, go to this spot". I don't remember what it was at Sea World and as luck would have it, Granny "lost one". Here's the story.
Sea World has multiple tanks with all types of aquatic life. Naturally, there was a tank with dolphins where you could purchase a little carton of these tiny fish to throw into the dolphins' mouths. Tom was fascinated with feeding the dolphins. We all got to do that and then moved on ahead to other things. We paused for some refreshments and Tom was allowed to leave the Carter "huddle" to purchase a cold treat. I believe he was told to come back to the same area or meet us at the next tank or something like that. After a while, Grandma Libby did a "head count" and realized Tom was not with us. Mike, the oldest sibling in the group was promptly dispatched to find young Tom. And where did you think he found him? Tom took the money Granny had given him and went back to the dolphin tank and bought more dolphin food. And, that is where Mike found Tom; leaning over the side of the dolphin tank tossing in those little fish. Boy, Grandma Libby was so upset with him, but after she calmed down, we all had a good laugh! Grandma Libby wore herself out trying to keep up with us all and that incident is also the reason why our Mom and Dad were required to go on the next trip.

So...for the rest of our lives, anytime someone goes missing or we don't know what's up or we just want to disappear for a while, the code words are "gone to feed the dolphins."

*There were so many times I can remember Tom launching into one of his "Robin Williams" tirades. He would talk so fast and furious that it could sometimes be hard to keep up, especiallif he was imitating the character "Mork" from the Mork and Mindy show.. I can still hear him say "na-noo, na-noo!" He could also imitate "Steve Martin", which would be equally hilariously. He would have us rolling.

*Grandma Libby sent us to summer camp, which was sponsored by her church, Bull Street Baptist. It was a two-week session, with the first week being at the Savannah location and then, for the second week, we were going up to Toccoa GA near the big GA Baptist Convention Center. I'm not sure what the attraction was for Toccoa but that was the plan. As the departure date for Toccoa got closer and closer, Tom began to experience the worst stomaches. They tried to make Tom feel better in the infirmary, but....strangely...nothing worked. Grandma Libby was called and she drove out to the camp to pick Tom up and take him back home with her. She did check in with me but I was all excited about the bigi bus trip and all that other mess; I was older so I guess that made the difference. Anyway, as the story goes, Grandma LIbby gets home with Tom, and Grandaddy Carter was none too happy. He picked on poor Tom saying he was just homesick and that Grandma Libby should have left him there. Then came the hamburgers. Grandma Libby made some of the best hamburgers in the world. When she asked the sickly Tom what he felt like eating, he said hamburger. If I remember correctly, Tom consumed at least two of those hamburgers and amazingly, did not get the least bit sick. Grandaddy Carter huffed and puffed and said that anybody that could eat like that didn't have stomach problems. It was funny, but as usual, Grandma Libby didn't mind. She loved having any of us around. On Sundays, after church, there were trips to Krispy Kreme or Baskin Robbins. Sometimes Grandma Libby would take us out to lunch after church adn we'd meet up with some of her church friends. I remember one lady in particular, Miss Mary Dewberry!! What a name!

*Back home, it was a never ending battle to control of the television selections. We only had 3 channels so I can't imagine how much fighting we could get into over what to watch. BAck then, though I hated Star Trek and it used to make me so mad if he got to the tv first. I am a big Trekkie now but it is partly as a result of that forced brain washing, having to watch it with Tom.

*Tom was a picky eater. If Dad was home and Tom didn't eat his dinner, Dad would simply tell Tom to go to his room. Somehow, Tom was getting peanut butter and jelly sandwiches smuggled to the room. I cant remember if Mom was doing it or if Tom was sneaking out after the kitchen area was clear and getting it himself. There were definitely occassions of finding PB&J scraps on a plate under his bed.

Thursday, February 24, 2011

Online obituary --

Thomas A. Carter 6/2/1965 - 2/11/2011

Mr. Thomas A. Carter, 45, of Roswell, died Feb. 12, 2011. A memorial service will be held on Saturday, Feb. 19, 2011 at 1:00 pm at Trinity Lutheran Church, 1826 Killian Hill Road, Lilburn, Ga 30047. The family will receive friends at SouthCare Cremation Society and Memorial Centers, 2260 Old Milton Parkway, Alpharetta, Ga 30009, on Wednesday, Feb. 16, 2011 from 7:00 pm to 9:00 pm. Those wishing to make a donation, please make donations to Arrangements by SouthCare Cremation Society and Memorial Centers in Alpharetta. (678) 735-5500.

Wednesday, February 16th, 2011, 7:00 pm
Southcare Cremation Society and Memoiral Centers
2260 Old Milton Parkway, Alpharetta, Ga 30009
Saturday, February 19th, 2011, 1:00 pm
Trinity Lutheran Church 770-972-4418

February 14th, 2011
Our hearts and prayers go out to you. We met Tom through our son Mark Connell and everything we knew of Tom was all wonderful. It was our blessing to have known him.

- Mickey and Lesslie Connell, Ringgold Georgia

February 15th, 2011
This has been one of the saddest times of my life. Words will never express how I feel.

- Bruce Henry, Lithonia, Ga

February 15th, 2011
Our thoughts are with you Lisa and Katie. Tom will be missed greatly. It was an honor to have had him as a friend so many years.

- Wendy Chaney, Athens, Ga

February 16th, 2011
Sadly, I never met Thomas but did communicate with him via email about his love for military history and my work on our common Carter family ancestry.

Being a first cousin to Tom's father Richard, my wife and I offer our prayers to Tom's family and we pray that God will provide the special comfort and healing to you in the coming days.

- Bob and Flora Carter, Greensboro, NC

February 16th, 2011
Lisa, I have only known you, Tom and Katie for a short time and hope we can have many more years of friendship, and love growing strongly. Tom and I had a lot of conversations in his time of illiness and he told me stories about his childhood and his adult life with you and Katie. And there is one thing I am sure of, his love for you and Katie was a very strong love and you will have those memories forever. We love you dearly, The Lady That Sells The Peanuts.

- Eloise, Snellville, GA

February 16th, 2011
Lisa, Megan & I (former Laurian Park neighbors) were so saddened to hear of Tom's passing. I always loved it when I'd look out on the street and see Tom weaving down the hill on his longboard! It was like he was soaring to his own rhythm.

We are holding you and Katie close in our prayers.

- Dick Saunders, Roswell, GA

February 16th, 2011
I'm gonna miss my brother terribly. His love of life and God's creations will forever remind me of how preious life is. My outpouring love and support go to his courageous wife Lisa and daughter Katie. I love you both tremendously!

Love ya,

- Elise Clark, Ocean Springs, MS

February 17th, 2011
Lisa and Katelyn,

I am so sorry for your loss, I went to school with Tom at Waycross High.

- Renea Sapp Taylor, Blackshear, GA

February 17th, 2011
Don't remember if I ever met Tom or not, but I am a first cousin of his dad Richard & also sister to Bob Carter & Beth (Carter) Flynt. May God bless & comfort you in the days ahead. Our prayers are with you.

- Al & Marilyn (Carter) McDonald, Radcliff, KY

February 18th, 2011

I am sincerely sorry to hear of your husband's passing. I truely pray for comforting for you and your family. Say hello to Carla for me and hoping she is well.

- Doris Mclendon, Decatur, Georgia

February 18th, 2011
Lisa, Katie,

I am shocked and saddened by the news of Tom's death. He was an extremely special, creative, and talented individual. I know his fight was living hell, and that he fought it with humor and grace.

I am glad to have known Tom and you both. You will need strength for the road ahead. Life is tough, and I will be there for you both, as I still ache every day for the loss of my own beloved husband. Hold on to each other. Comfort is hard to find. You still have a life ahead of you; you must make it precious.

- Ellen Grubbs, Decatur, GA

February 18th, 2011
My thoughts go out to you and I am so sorry for your loss. Tom was a one of a kind and there will never be another one quite like him. I can't even begin to put into words the amount of loss I feel over losing my best friend that I've known for thirty-two years now. He will be forever in my heart as I know he will be in yours.

- Eric Chaney, Athens, GA

February 24th, 2011
Tom was my son-in-law. Tom gave Lisa a ring on 3-22-91 and that October they were married at our house. Thus I gained a son and friend. Over the years we became closer. I could call him anytime and listen to him tell his stories--I never tired of them. He came to every cookout, 4th of July celebration, birthday and Christmas. I watched as he bought his first house,graduated from school, learned the computer, became a Dad and raced his mountain bike. He was a very creative and special person who touched us all. I still think about him daily and still have to wipe away the tears. I'm having a hard time getting over this. I will miss him forever. I really loved him.

-Jan Henry, Lithonia, GA

Tuesday, February 22, 2011

Memories from Ron

I received the following message from an old friend, Ron - a colleague of Tom's from one of his first jobs in the "professional world":

Lisa and Katie,

I am so very sorry to hear about Tom's passing.

I realize I can't imagine what a time you've had, and are having. Thank you for sharing so much of what you've been through on your blog.

In light of your request for stories about Tom, I have a couple.

Tom and I earned our friendship. We were coworkers at BellSouth who didn't know each other particularly well when we were assigned to build a web site together ('s business-products web site). I was the programmer, he the artist; my job was to build the site, his job was to make it look pretty, effective, and functional. Together, our job was to design and organize it.

I remember there were about 3 days where we had a steadily-building professional argument, both of us increasingly frustrated with a communication we knew should be going much better than it was. He had never built a web site of the type I thought we were designing; I'd never worked with a real artist (only a fake artist, i.e., myself). We both had lots of experience in our respective fields -- we were both good, and knew it about ourselves and each other. That's why we were confused and frustrated. We both felt: I know how to do this, and I know *he* knows how to do this. Why can't we get it worked out?

It boiled down to this: I was writing a computer program. He wasn't really building artwork for a web site; he was building artwork for a *computer program*, which would *use* that artwork to build a web site. Computer programs (um, and their programmers) are... let's say... finicky. Computer programs (ahem, and their programmers) expect the world to provide conveniently-sized little pieces of artwork in a predictable, unchanging way. Tom had never worked with such constraints, or needed to; he's a powerful, skilled artist, who mastered building Web sites early and quickly. There was nothing he couldn't design or build. So he didn't know what I was asking for, or why I was asking for it. Similarly, I couldn't quite grasp why he didn't know what I was asking for, because the things I needed seemed "obvious" to me. (They weren't obvious, of course, but I felt they were.)

We had a couple of knock-down drag-out conversations during those three days, and eventually came to an understanding of what we both needed to do to get the site to work. It was settled. Clarified. But we were still a little het up from that interaction.

And then, two days later, he came literally bounding, bouncing into work, grinning his head off, more like Tigger from Winnie-the-Pooh than anyone I've met. I believe it was the middle of the morning, or perhaps early afternoon -- I think he'd taken you in for a checkup. And, exuberantly, he told the following story: "Ron! Ron! I had a revelation last night! It's funny -- I really saw this in a dream! Lisa and I were sleeping. You know Lisa's pregnant, right? So in my dream, we were sleeping, just like we were in real life. But then I floated up above my bed, and looked down on the bed, and saw a grid of HTML table cells covering the bed! I was in one cell, and Lisa was in another cell. It even had a merged table cell between columns 2 and 3 where Katie is, where Lisa's belly was sticking out. It was awesome! I finally get it!" (Maybe that's not exactly what he said. But that's how it stuck in my head.)

After that, he and I always had big grins when we saw each other. We’d built a bridge. We were no longer merely coworkers who respected and liked each other; we were, suddenly, friends. The rest of that project went *very* smoothly, and every project after that. Talking and working together became decidedly *fun*. We were able to communicate as well as brothers, both because we'd actually learned to speak each other's language, and because we'd cut our teeth on the same very challenging emotional and technical situation.

I was also aware that he'd shared something very personal with me. I was, and remain, honored and humbled. How is it that a conversation with me had become part of his dream about his wife and daughter, part of this tremendously tender and iconic moment?

Much of my friendship with with Tom is embodied by that situation: the fact that he'd share such a personal story with me; his excitement and pleasure at making such a mental and professional breakthrough; his sense of irony that a computer concept could be "revealed" in a dream; the fact that our conversations and struggle to work together had had such a deep impact for him; and the fact that working through that situation made us friends.

The other core image I have of Tom is of his telling the following story.

He had a teacher during high school who was both a farmer and a physicist. As I recall, the teacher would invite the kids to his house, where they'd stare up at the stars or the sky and talk about what was literally going on in the universe, as best science knew at the time. When Tom told this story, he would adopt an extra-heavy Southern accent -- his teacher's accent -- and talk about black holes and Einstein's theory of relativity and Newton and Galileo and laser optics and gravity. And then, in the middle of a sentence, Tom, still playing the role of the teacher, would cut himself off: "now, y'all'll have to excuse me... I have to go feed the chickens." Then he'd half-limp off stage (out of his cubicle), as he left the kids to ponder the stars while he went around back to the chicken coop.

Tom's telling of the story seemed to say: this very smart man, this very good teacher, was from the deep South; he was a farmer who loved and respected that part of his life, and could have had a happy life doing just that. And yet, without giving that up, he became a physicist, and could excite other people in science and astronomy and seeking truth and understanding the world and the universe. He put the responsibility of feeding his chickens above the social nicety of being a host, and showed that to the kids. I felt that Tom was empowered and excited to have been part of that, to have had his mind expanded by this man who had raised himself up, and who was so warm, and such a good teacher, as to make his students part of his family.

I appreciated that Tom kept striving for understanding the world, the universe, his place in it. His humility. His shockingly high skill with pen and paint and computer art, doing very good work very quickly. His ability to do deep, conceptual abstract paintings as well as clean, professional business graphics, and how he seemed at peace with both of those being expressions of himself. His enthusiasm for the things which excited him -- biking, Aikido, his new computers. I appreciated that he got so much into Aikido; I was very interested in Aikido too, at the time.

It's important to me that I have grown as a person, a professional, and a friend with him and because of our work and fun together.

I do not dismiss Tom from my thoughts. He's still here, he's part of my life, despite how little we've talked since I left town 12 years ago.

Losing him hurts.

Please feel free to contact me at any time, now or in the future.

I wish you both, and your combined family, the very best.


Saturday, February 19, 2011

Major Tom

Tomorrow, Saturday, is the funeral. I went and picked up "Tom" at the crematorium today. He is still strapped into my backseat. Such a strange feeling having Tom in a cardboard box (urn inside).

Thursday, February 17, 2011

Here's to Tom

Thanks to everyone who came to the viewing last night, and thanks to everybody else, who I know were with us in heart and spirit. It was good to see, and a great way for me to take my mind off of everything (there are many little tasks to do when one's loved one passes away). I've read all of your comments on my blog, as well as Facebook, but talking in person was very uplifting.

I realize some of you may be having a difficult time, but I hope that eventually you will be able to release your sadness to the best you can, and instead be relieved and joyful that Tom is no longer suffering. As you know, I was with him during his illness for the last 3.5 years including the last month, when his existence changed into an unending suffering, from which he seemed to have no relief. Even though it hurts like hell to have to part with him, I can't tell you how glad I am that he is comfortable and has moved on to a peaceful eternity.

Tom has told me in the past on a few occasions that even though death is difficult to understand and comprehend, he wanted us to try and be resilient rather than sad. He actually said that he wanted us all to have a party, drink some libations, listen to some Grateful Dead, and celebrate his life. Here's to Tom!

Monday, February 14, 2011

Official times and dates

Here are the official times and dates for Tom's memorial service and viewing:

Viewing - Wednesday, February 16th, 7:00 - 9:00

SouthCare Cremation Society (Please use valet parking located in back of building so that there will be enough parking for everyone)
2260 Old Milton Pkwy
Alpharetta, GA 30009

Memorial Service - Saturday, February 19th, 1:00

Trinity Lutheran Church
1826 Killian Hill Rd.
Lilburn, GA 30047

Wednesday's viewing

I can provide you with the time of the viewing, which takes place on Wednesday, after I finalize the details with the crematory director today at 1:00pm.

Thanks to you all for so many wonderful and inspirational comments. I always knew Tom had lots and lots of friends, but I am overwhelmed with how many people have reached out - people I never had the opportunity to meet - those from his childhood, and different jobs he's held in the past, and bicycling acquaintances, etc.

I was so fortunate to have him as my husband for 20 years.

Love to you all,

Saturday, February 12, 2011


If anyone would like to share a story/memory, or a few kind words about Tom, at his memorial service on Saturday, please let me know. That would be a great way to lighten a solemn event - the more, the better.


The arrangements for Tom's memorial services:

Viewing: Wednesday, February 16th - time to be announced

SouthCare Cremation Society
2260 Old Milton Pkwy
Alpharetta, GA 30009


Memorial Service: Saturday, February 19, 1:00 pm

Trinity Lutheran Church
1826 Killian Hill Rd.
Lilburn, GA 30047

Good-bye, My Love

Tom passed away this morning at 10:20. My mom and my friend Carla were in Tom's room when we arrived. Katie and I got lost on the way to the hospice which put us about 45 minutes later than we had planned on arriving. We walked in, hugged him, kissed him, talked to him and made sure he knew how much we loved him....he passed away five minutes later. He waited for us to arrive.

God, I miss him.

Friday, February 11, 2011


Tom was moved to hospice this evening - Hospice Atlanta. The doctor at the hospital suggested doing a liver biopsy and then another lumbar puncture - both very painful procedures. I elected not to. When I walked in today and saw Tom struggling with his breathing, eyes closed, mouth wide open and drooling, I decided that Tom didn't need all of that. Even if these procedures had pinpointed the issue, Tom was already in a no-win situation. A liver transplant and chemotherapy would have taken his life. I want him to relax and be as pain-free as possible. The doctor agreed in a roundabout way, as they are not permitted to speak their feelings (I've learned that over the past four years). I know deep down that he agreed with my decision. He said he was surprised that Tom has made it this far.

This was the most difficult decision I have EVER had to make. Even though I know I made the right decision, it is still a very troubling feeling.. Tom has been in a coma before (mentioned somewhere in a previous blog entry a couple of years ago), and made a remarkable recovery. This experience is nowhere near his condition at that time. He was able to walk, and eat, and talk, and drive, and maintain personal hygiene after coming out of the coma back then - he was self-sufficient. He honestly can't do anything right now.

Tom is in a much more relaxing place. His room is lit by calming lamp lighting, his "hospital bed" is much softer and lower to the ground like a normal bed. There is soft, soothing music playing very quietly, and there are accommodations for loved ones. The doctors and nurses are wonderful. This is the best place Tom can be right now They will give him enough Morphine to keep him pain-free, yet not so much as to put him in a complete stupor.

Katie and I are really struggling, but we are there for each other. If she's not crying, I am, and vice-versa. We comfort each other the best we can. It's good to have someone who knows exactly what you are going through. We share the same pain and share the same fond memories.
I have photos from today, and will post them later.

ICU photo

I decided to remove the latest photo of Tom, from my blog. It was disturbing my brother-in-law, and probably a few others. He is going through I great deal of emotional pain, as are all of us. I don't want to do anything to exacerbate that.

My reason for posting that picture was to let you see what I see every day. What Katie sees. What family sees. Some of you may want to visit - some of you may change your mind after getting a glimpse on my blog. Some of you may be thanking me in your minds, for sparing you the shock.

I love Tom and I love my family and my friends. I wouldn't do anything to intentionally harm you.

I may post it at a later date, before I publish my blog into a keepsake book for Katie. I'm praying the book will have a fairy tale ending.



Thursday, February 10, 2011

Day 2, ICU

When I arrived at the hospital I was a little excited. I was in a mindset that he was doing better. Let me tell you, I was shocked when I walked up to the door and was approached by his nurse. She asked me if he had a living will. I said yes, and she told me I should bring it with me the next time I came for a visit. The doctor told me later on that it was just a precaution - best to have it on file than be unsure of what to do in that situation. Believe it or not, that is the third time in the last four years that I've been told to bring the living will. On the two occasions before this one, a pastor came to visit us in the hospital room unexpectedly - now if that doesn't scare you, I don't know what will!

Photo removed

Tom looked nothing like I expected. He is still hooked up to all sorts of tubes. He still looks uncomfortable and exhausted. I know in my heart that he is ready to let go whenever his mind allows. He doesn't want to exist in this condition. It is so painful to see him like this. I wish I could help him get to a more comfortable place, whether it be at home by a cozy fire in his slippers, or in a place where we will all reunite one day.

New Skin

I called Erin a little while ago to check on Tom. He is still in the Intensive Care Unit, and he does have a full-time "sitter" to make sure he doesn't pull any tubes out of place - either that or they'll need to tie him down.

Erin's update is as follows:

1) the infectious disease doctor saw no infection in Tom's spinal cord or brain

2) the nurses changed the dressing on Tom's scab and Erin said that the nasty skin has mostly "come off" and there is now fresh skin

3) Tom wants water but he can only have ice right now (I don't know why)

4) he's saying a few garbled words here and there - usually when Erin intentionally tries to irritate him

5) the doc ordered an x-ray of his lungs to see if there is any fluid present - the results are not yet available.

We aren't sure why he sleeps all the time. I'll find out when I return later this afternoon.

Good Morning

I've just returned home after a long, restless night. Tom was experiencing some pain, and was asking me where he was, and why he was there. He said he was cold and wanted to be in his own bed. He said he couldn't take it anymore. I asked the nurse to relieve his pain a little but she said all she could do was to give him and anti-anxiety med to relax him a little.

The nurse woke me up around 6 and told me that she was going to secure a sitter to watch Tom 24/7. She said he pulled his feeding tube out a few times during the night and that she felt that he didn't know that he was doing it. Although he was pulling with his hand, he didn't know it, he was just making himself comfortable. It's dangerous because the tube has to be reinserted each time and the tube could crimp or not reach it's intended destination inside his body. They can't take an x-ray everytime he removes it, obviously.

My sister-in-law, Erin is visiting from Spartanburg. She and I are taking turns staying with Tom. I should take this opportunity to thank our families. Tom's father and step-mother have stayed with Tom almost every day for the last four weeks, while I was at work. My mom has also visited and brought him things to make him more comfortable. My dad has been supportive and was present the last time Tom was taken to the hospital via ambulance. Every single member of our families wait with baited breath for any ounce of information, and any chance to assist us. Thanks everybody - we couldn't do this without your help. We love ya'll!

One more person to thank - Katha Stuart. Even though we aren't family, she helps us out as if we were such. She is there on the spot whenever we call upon her. As I mentioned yesterday, I was so worried about Tom. I called Katha immediately and asked her to bring Katie to the hospital. Once there, she offered to take my leave forms downtown for me. She is such a big help, especially when it comes to Katie. She takes Katie under her wing and treats Katie as if she were one of her own. Thank you, Katha. You are a Godsend!

Wednesday, February 9, 2011

Coming around

I left the hospital for a couple of hours - the visitors have to leave during certain blocks of time during the day, including each night from 6:30 - 9:00. When I came back, the nurse gave me a short update. She said that Tom will be getting a brain scan in the morning. She also said that they have stopped giving him pain medicine all together. I think the pain medicine was a big part of the problem with him being so distant. He is much more responsive. Still difficult to understand and tired, but definitely more alert. I'm spending the night, so tomorrow morning I'll let you know how everything went.