With his final breath, came relief. My mind said, "now you can rest." But hours later the realization that plans for a service were in need came into my awareness. I was *not* ready to do that yet, but people were already on planes or booking their flights and hotels. It had to be done.

Raised Catholic, but not actively practicing Catholicism in his adulthood, I wondered what exactly to do. Sure, Tom had joked about combining a Catholic Mass with his "other" spiritual community. Could I really get away with merging the two? He was joking, but I know that a part of him was serious about it.

While I initially entertained the thought of a Catholic Mass in the immediate future and a memorial a couple of months down the road, I changed my mind. I memory of Tom’s amusement, I have begun arrangements to play out Tom’s instructions (however jokingly he meant them).

We will be having my Uncle do the mass. He is currently the Bishop of Reno. He and Tom had a fond respect for each other and he puts on a very entertaining and lighthearted mass. I didn’t think that I could pull this part of the instruction off although Tom was pretty sure if niece Julie asked that I would be so. As it turns out, Tom was right.
It seems only natural to combine the two now.

His death, difficult as it was, was an eye opener to the "other side of Tom" for those who could have it. They were very aware that when his "meditation friends" arrived that he was calm and more peaceful. I am so thankful to those who helped to make that possible. They kept the room grounded so that Tom could work the energy of dying. It was, after all, his death not ours. It needed to be on his terms.

There is so much to do still. I haven't much time to think about it all. I am realizing that the "hurt" gets held back until I am alone with my thoughts. I haven't had much alone time, but want some where the family is still here to hug me when I come back for being away. It hurts. During his dying process, I remembered our life together (happy and bad moments). Now, I am remembering those last few days (his final hours, his last breath, his final tear...). This grieving stage isn't going to be fun.

This morning is the first morning where I don’t have him to care for. As I listened to BoBo get ready for school, a rush of sadness hit. I haven’t had much alone time, which forces me to be “okay.” Last night, when I was in the shower, I began to let myself cry…but then YaYa was outside the curtain saying “knock-knock” jokes. I sucked it back in so that I could interact with him and not want to yell for him to go away.

Later, YaYa and I cried a little together as he talked about Tom being with the family and friends that have died ahead of him (his Mom and Dad, other relatives, David B, and Bob W to name a few). YaYa said the he'll visit with them a while and then come back to earth to join a new family, in a new body, when he is ready.

My Dad is coming by today. It turned out that last night would have been better but he was nervous about being in my home when the body was still there. We did allow for the kids to see Tom's remains a final time (if they wanted) before he was sent on for creamation. This, too, was his wish. This part was no joke - I have very clear instructions.

The family is rushing in from all over. I don’t know who from my large extended family will come. A lot, I expect. My Auntie Maria called me last night and I could appreciate her “I’m sorry” more than anyone elses. I know that my Aunt and Mom truly understand what I’ve been through, what I am trying to figure out right now, and what I’ll need to do moving forward (minus the kid part).

I realize that people can't find the words to say more than that, but I am so tired of saying “Thank you.” There’s nothing else. No words can resolve it. I do remember my Mom saying the same thing to me after my Stepdad died. She preferred to hear "You have my condolences" to "I'm sorry" or "I feel so bad for you." I now understand. It's another energy thing. Condolences do not need healing. Sorry and feeling bad does. I can't heal anyone else right now; I'm tapped out with healing the kids and myself.

We are envisioning the post Mass party to be here at my home. It will be crowded, but it will just *have* to work. We will cater in some food but ask that anyone who wishes to bring a food item to share should do so.

More later - YaYa is awake and there is so much to do.

Posted by Juls at 6:20 AM | Permalink | Comments (16)

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
~ DD Thomas

Let the healing begin.

Posted by Juls at 10:50 AM | Permalink | Comments (15)

I woke up feeling well rested - as if I had gotten 8 hours of sleep. I looked at the clock. It brightly displayed 3:55 am. Through the floor, and in the through the heater vent, I could each breath that he took. With each moan, I felt it in my heart.

Down the stairs I went. More Morphine, Atropine, and Ativan. It just doesn't seem to be enough. I pulled down the sidereal and lay with him a while. Then, when the pounding in my head was too overwhelming, I got up for a cup of coffee and some emails.

Thank you for your heart-felt comments. It will be soon, but soon is just not soon enough.

Posted by Juls at 5:17 AM | Permalink | Comments (8)

Each night, we have one of Tom's close, male friends come to sit with him over night. The response has been great. It's not that I have been sleeping a lot lately, but I have at least been lying down.

Tonight, Tom's friend, David, is here to spend the night and allow me to sleep. YaYa and David are playing a game of Old Maid beside Tom's bed. The fireplace is going and YaYa is able to be relaxed and near his Dad on a new level. It's safe for him and "good."

All the while, BoBo sleeps on the couch in the next room. It is early, but last night was a bit trying. No one in the family got to bed early last night.

And me? I may be taking a sleeping pill tonight so that I can get a “good” night’s sleep. If YaYa goes to sleep, than I will be able to sleep better too. A game of Old Maid is the perfect sleeping aid for him.

Posted by Juls at 7:26 PM | Permalink | Comments (4)

Hello Readers,
Please keep in mind that my posts these days are more of rants - venting and emotional dumping. The "You" referred to in this post if not any specific person, but rather the energies that I have been working in the process. Now that the issue is resolved, I am free to post my thoughts from days past. I hope that if you are ever in a similar situation you can learn from my experience.
~ Julie

You may look on at my actions and wonder when I will just sit to read a book, or just be in the room with him. To watch, you see me hovering with pills to be given, or clean clothes to put on. And you wonder why - I don't just sit as you do.

From my point of view, there are the tasks of "caregiving" that I have committed to providing. I hear you saying bring in the nurse to be "the bad guy." I really do hear what you are saying. Giving the pills, the morphine, the change of clothes is more than just a "task" that a nurse performs. It is the pills that reduce the brain swelling, lower the blood pressure, calm the body, and minimize the pain. It is LOVE. That is what I am sitting by waiting to give.

"Why haven't I been sitting and only that (as you do)?" Just the other day he asked about the "tone" being off. Everybody is doing things that they wouldn't normally do. It felt wrong to him, and I guess it feels wrong to me too. My life has changed, but I have yet to change with it. That will come later, I suppose.

I never was one to just sit. That is how he and I are different. This difference has had it's role all these years. I keep busy - taking the kids to and fro, being at their activities (games, parties, etc), communicating with the teachers, coaches, daycare, and then working and running. I've never been able to keep up with it all, but I've done my best.

There were many times when pizza was ordered, or the clutter and dog hair left lying around beside the piles of clean (but unfolded) laundry. But that was normal and I had a familiar rhythm in that. Now, as I watch you pick up YaYa at practice, go to BoBo's baseball games, or even do the shopping, I feel like my life, my rhythm, is dying with him. I cannot say enough how much I love You ALL for all of the love and support. I know that I cannot do this without you. I just want to feel like I have control.

I found your notes for the nurse to be brought in. This is his and my decision. I found them, yes, and I hid them from you. Sorry, but I am saying NO. I am not ready to have a stranger in my house being "the bad guy" to the man that I love. He doesn't need a "bad guy", he needs a "caregiver." And I need to be that for him and for ME.

Posted by Juls at 7:49 AM | Permalink

I grabbed my camera and headed out the door for an early run today. I'd slept fairly well, in spite of having gotten up here and there to give Tom his medicines. It was a lovely spring day. I'd noticed the blossoms on the trees and wanted to get a few photos of them.

After the 4th or 5th photo, it occured to me...

...my breathing issues might be due to the spring pollens.

Posted by Juls at 5:53 PM | Permalink | Comments (7)

I am not really one to panic. Sure, I stress about things as much as anyone else. Maybe even more. I had considered that my event during the dog run-around-the-block incident was induced by the stuff blowing around in the air. There had been a guy with a blower whose debris seemed to get caught in my throat. So, I really didn't think much of heading down the street for another brief run. I did need a break from it all.

I wasn't more than a quarter mile from my home, however, when I began to feel the same feeling coming on. Panic was raging through my body and I was hungry for air. "Oh, NO," I thought, "this can't paralyze me." I slowed up, but kept running. I kept telling myself that I could get through this and that it would be okay if he died when I wasn't there. I'm more than ready for it. I think that we all are.

But something is not yet done. Something has yet to occur. So today, I pushed through the panic and made myself get away for a while.

The run was a last minute thing. The time arose and I went for it. It seemed like eternity for me to find the things that I wanted to take with me. When I finally made it out the door, I had intentions of running about 8-10 miles. But as my legs began to move, my heartrate and breathing were forced to increase, I felt unprepared for the task. It was all I could do to keep moving.

It wasn't my best run. In fact it was a very *sucky* run. The entire time, I felt that I should just give up and walk. But I didn't walk. Instead I ran and thought about all of the things that I had to do.

For one, I thought about YaYa having the last of the winter session's swim lessons. I made a plan to talk with the deck supervisor to urge them to give the boy whose father is dying a stupid ribbon. I my mind, he earned it long ago.

I thought about how Tom would not be on the sidelines for my next marathon - whenever it ends up being. He might be there in spirit, but I won't have him waiting to give me a thumbs up, or a hug, or having told the kids where to stand to be sure that they caught my picture for the "scrapbook" and, now-a-days "the blog." I will only have his memory.

So many thoughts ran through my head. So much emotion. And the tears were held until I was safely stopped in front of the house. Then the floodgate opened and I let myself cry...again.

Another thought/request: Please, don't pray for Tom to live on. Please only pray for peace - in him, the family, our home, and the world.
Thanks.

Posted by Juls at 6:30 AM | Permalink | Comments (6)

I ran the dog down the street yesterday. We were going to run around the block, but something happened. In a sudden moment I was gasping for air. This wasn't your usual "I am out of shape" shortness of breath. My airway felt tight and I felt as if I was going to die. I stopped, tried to relax and turned back towards the busy street. If I were to pass out, I'd be seen. I feared that it meant that something horrible was happening back at home. But when I was back home, my breathing was normal again and everything was as I had left it.

Back at home, the "new norm" concept was thrown out the window. Our life has made a 360-degree turn - like it or not. Anything-resembling "normal" got thrown out the window early this week.

Another trip to the ER revealed strokes. I guess tumors in the brain weren't bad enough. Hospice services were started up and the family has been updated on the actual prognosis.

It seems that the oncology doctor hadn't quite conveyed Tom's finality to us in exact terms. Either that or he was thrown for a loop as much as we were. I have no idea where his reference to "1 year" survival had come from. That was what we were told on our first meeting with him.

Within days of the leaving the hospital (the first time), Tom was visibly heading down the slippery slope. It seems that we are now dealing with mere "weeks" of our time with him.

My husband's has been cut short. My life has turned upside down, and the kid's life has been turned inside out. ALL of us *will* be okay, eventually, but right now...my head just hurts.

Posted by Juls at 1:20 PM | Permalink | Comments (7)

The fond memories of our courting, the joys that we've shared with our children, and without them. It's been 20 years of adventures.

In the beginning, we shared bicycle riding, poetry, and coffee together. We sat in parks together sipping our cappuccino drinks while he read poems to me (written by him or by wonderfully spoken poets). He awed me with his wisdom and kindness.

I remember my older sister, only knowing him from tough times in the year’s prior, calling me to protest my relationship with him. The man that I was dating was not that "grumpy" man that she had known. She was surprised at whom I had become, almost disbelieving that I could enjoy poetry and literature. She had a lively man picked out for me - someone that she thought was better suited. *sigh* I'd been there, done that; the Mr. Lively type didn't work well for me.

It hasn't been all fun and games. We've had our ups and downs. Through the lowest of times, my love for him has been strong, as his has for me.

Big Sis was wrong. I did choose the right man to settle down with. He has given so much to the children, his friends, and me. Now it is time for him to let us give a little back to him.

When I look at ending our adventure, I know that we will always be together - in spirit. I will have the memories (good and bad), and three beautiful kids that were created from his love.

Posted by Juls at 6:36 AM | Permalink | Comments (1)

Every day is a little different from the last these days. Some days are near normal, even "good", while others are not so much. But through it all, we are trying to maintain some sense of normalcy for our children and even for ourselves. It's just a NEW "normal."

One by one, members of Tom's family have flown out to assist in the regular tasks that need doing. It's a huge help and it is also nice for Tom to see his siblings. They have a full list of where the kids are, need to go, and when they need to be there. It's amazing that I ever did all of this stuff on my own plus the rest of life.

In speaking with the director of my department at work, the question came up out having these folks, and others, stay with Tom and care for him while I go to work. I am sure that she *had* to ask. She wasn't at all surprised when I said, "No, they are here to help with the other things. I take care of Tom."

I have since committed to working 24 hours per week from home. I will use FMLA for the remaining 16 hours needed to keep the benefits going. For the most part, this is working for me. I have the freedom to work these hours however I need to with the exception of the meetings (which I am able to join via phone). I am so blessed to have a director that is so supportive.

Today, I began working at 6:00 am. Tom was back asleep and Joe agreed, eagerly I might add, to drop BoBo off at high school. I got a lot done.

I took breaks to check in on Tom, wake him to give him his medications, and prepare his breakfast for him when the time came. He seemed pretty worn out today - perhaps from the cumulative effects of the daily radiation treatments or perhaps from the extra visitors that came during the weekend. He's hanging in there with us, and it's good to be able to be with him.

I return to the computer for more work, but my mind is not on work any longer. I too am slightly worn from the extra visitors, emails, and phone calls. Everyone wants an update, and I am too tired to retell the story. Besides, I've already said too much. I feel a twinge of guilt talking about Tom's health with everyone. Sometimes there is the empty silence in the phone line when I've given all the information that I am willing to provide. It tells me that they want to know something more, but know not to ask. That's good, because I really don't want to give an answer.

I've got some work to do. I take it day-by-day, call-by-call, email-by-email. And working serves as a little distraction as well as a source of income. I guess you could say that it's bill-by-bill as well.

Posted by Juls at 4:38 PM | Permalink | Comments (11)

Posted by Juls at 8:27 PM | Permalink | Comments (5)

I took advantage of a good situation. I pulled up my hair, donned my running shoes, and took Garminia with me on a run. My sister-in-law offered to accompany by riding a bike beside me, but I turned her down. I planned to create a little separation from the world around me by enlisting myPod's entertainment skills.

Right out the front door, I hit the road. At first it felt pretty foreign, but after my lungs adjusted I settled down. It wasn't just a little run either. I ran for 10 fantastic miles.

Posted by Juls at 8:13 PM | Permalink | Comments (8)

My name is Juls. I am a runaholic. It's been 7 days since my last run and it has not been easy.

I am sick. I need help to be strong and resist the urge to don my running shoes, pony-up my hair, and hit the pavement for a few quick miles. There are so many who are counting on me right now; I cannot let them down. Someone, please send help.

Posted by Juls at 1:46 PM | Permalink | Comments (5)

Well, it was bound to happen; I wore myself out. The headache that I'd been feeling in the past few days, the headache that I thought was from crying, has now been coupled with an annoying dry cough and a low-grade fever. It makes perfect sense, the bad run, the feeling warm, and worn out. It's time to slow down as much as I can. There will be no running, only resting.

I am fortunate to have DD here with me still. Although he tends to be a night owl, therefore waking up mid-day, his being here with us has allowed for some sense of normalcy to be maintained. He's helped convert the family room into a place for Tom. He's so wonderful.

Every little bit helps, and I am learning to ask for assistance. It is a hard thing to do. Nurses, even ex-nurses like myself, are great co-dependents. We feel the need to do it all. I've asked for some favors and hope that people will say no if my requests are burdensome in any way.

Our neighbor has agreed to take YaYa to school with her son. Since I am not working right now, this allows YaYa a couple of extra hours of sleep. I have also emailed to ask another baseball Mom (not the road-rage momma) if she could take YaYa to practice when she picks up her son at the school daycare. I guess she'll get her email today when she gets to work. I hate putting it out there so much; the story is hard to tell over and over. But I think that it helps people to understand my absence.

Speaking of absence, I discovered that BoBo has a baseball game today. I asked him if he'd like DD or myself to be at the game (assuming that he could only have one of us attend). BoBo said that he didn't know. I guess it was a little like putting him on the spot. Just after I had told the neighbor that I was looking forward to taking YaYa to swim lessons, as it would be a change in scenery, YaYa asked if DD could take him instead. "Okay", I said.

It's a strange place to be as I have always tried to do it all and be at all of the events. I'll miss some things, but be available for others. In the past, I know that some people have often asked why I do so much of the tasks, leaving Tom to pick and choose what he'll wants to attend. He was *always* working and I really was getting the better end of the deal. But, also, it was my choice.

Now, as my body screams for me to slow down, I have to let go a little more so that I can be there for the things that I am able to be at. I found my "good" prescription allergy meds and have restarted them (just in case), and I am drinking that airborne stuff. I'm hoping I can nip this in the bud before it fully kicks in.

Posted by Juls at 7:32 AM | Permalink | Comments (9)

Blogging is a tool, any many ways, that I use to get the best and worst of my feelings vented. My regular readers are a different sort of friend who will let me complain and perhaps offer a few words of encouragement too. If you blog, you understand what I am talking about.

My siblings are not bloggers and, mostly, they don't read my blog. But when I wasn't calling everyone back, but rather was giving updates to a few central people and instructing them to pass it on, drastic measures were in order - I guess. It's really hard to call everyone back. It is even harder to tell the story over and over, to answer the questions, and hear the advice. But everyone means well, and really just wants to help.

Carol did her best to give the update to my brother and sister, but she wasn't sure that she understood everything correctly. My Mom, then, suggested that my siblings read my blog. My first thought, when I saw the emails on this suggestion the following day, was surprise. Did they really think that I would put it on the blog and not yet not tell them?!

Needless to say, they were hit with the bombshell produced by one of my emotional lows during this experience. Linda called to say that she was so sad that I was feeling so devastated and lost. At times, that is exactly how I feel. Other times, I just do what I need to do and am fairly okay.

I have to tell you all, that there will NOT be a full disclosure of my situation here on the blog; honestly I never have put it ALL out there for you to read. I will let you know just enough to understand the shift in my running, and writing. I can't tell you how much of my experience will be poured out on the pages for all to read. I just don't know.

I will tell you that my BQ is no longer the goal for this year. I may not even run a marathon this year. But I will keep running when I am able to. As you know, my running is what helps me release the feelings of dread. It also helps me to be thankful for what I have TODAY.

As you may have guessed, it is my husband that is ill. The pain in his neck and shoulders turned out to be worse than I had imagined. It wasn't the heart attack after all, but it appears to be very serious. He was hospitalized for several days. During his stay in the hospital, DD and I spent most of the day with him. In the night, we would take turns breaking the visiting hours policy to sit by his side.

In the night, when I was all alone, waiting for DD to return home, I felt so empty and alone. The intensity was shocking. It hit me like when my children were born, and I realize that I had a capacity for love far greater than I ever imagined. Who knew that I loved this man *this* much? I knew that I loved him, but this surprised even me. I would cry all the way to the hospital as the thoughts of possibly losing him came into my mind.

In the wee hours of the night we would talk. What if this was the end? He gave suggestions for developing the best possible relationship with each our kids, and talked about what they might need in the future. And as for the unknown period of time with him, be it 1 year or 10, he talked of it as if it was a gift - if he had been in a car accident and died, we wouldn't have this time. We embraced eachother, holding on for as long as we are able. If I allow myself to get past the fear of losing him, and past the questioning of why did is this happening to him/us, I can give thanks for today and for my ever-loving husband.

Posted by Juls at 10:25 PM | Permalink | Comments (7)

I didn't get to run yesterday, but did have the opportunity to get out for a bit today. I arrived at the Ranch to find Garminia complaining that her battery was exhausted. YOUR battery is exhausted!? I was appalled at her lack of sensitivity for what I am going through. MY battery was certainly exhausted, but I wasn't bailing on the run.

Fortunately I would not be alone on this run. From my moving van I called up Mark to ask if he was game for a run at the ranch. Not only was he up for it, he was able to change and meet me at the park by the time I arrived. I left Garminia in the van and with my bare arm made my way to the usual meeting place.

I was greeted with a hug - which is unusual for Mark. As we began running, Mark said that I could talk about things if I wanted, or I could just run with him and leave conversation alone. I wasn't sure that I wanted to talk; I did NOT want to cry. We ran while I talked, and talked, and talked all the way up the hill until...I had to walk.

I guess my battery was truely exhausted. My leg muscles were sore too. I've been eating but not as much as usual. I eat out of duty and can only stomach small amounts. There is just too much that has gone on this past week. There is much more to come. Mark gave me a GU packet to eat. I sucked it down with some water and we turned back early.

I felt relief in being able to get out to run if only for a short, not so good run. Two of Tom's sisters have been visiting and helping out at the house - cooking, helping me clean, taking on the shuttle duties, and giving me plenty of hugs. Oh, how I need those hugs as the waiting game continues on.

Posted by Juls at 8:02 PM | Permalink | Comments (6)

Posted by Juls at 10:58 PM | Permalink | Comments (8)