sweet and hard

Hi All,

I want to share a couple of the stories of the past week before they become ancient history. The first is Tuesday Chrissy and 2 yr old Theo were going to visit. Chrissy and I talked in the morning and when she hung up she and Theo had a conversation that went like this. These are Theo's words. "That Tara? David ok? Tara's ok. David ok. Tara sad. Tara's ok." This is the baby that was born two days before David and I got married. Chrissy showed up here with eyes in big wide circles, amazed at what she just heard from her little boy! And that was just the beginning of the fun.

David and I have been looking for a rug for the living room for many months. It is an old wooden floor and we wanted to be able to sit, roll around, do yoga, etc. on a comfortable surface. We had many conversations about what exactly we wanted to put there. So, last weekend when I was in Portland, I looked and found a very pretty soft wool rug with perfect colors for the space, yellows, reds, blue/greens - it complements everything and doesnt' even clash with the funky green couches!

Lauren arrived too, and while we were all here, I asked if they'd help lay out the rug. David was alseep in the room, we moved out some of the bulky furniture, and he kept sleeping, Theo was playing cars on the floor, David still slept, I told David I was going to roll his bed out of the room so we could put down the rug. Still sleeping, we rolled him out, brought in the pad, and the rug, got them all to fit well, rolled David back in, over the bump of the new rug, and still he slept. And then Theo stepped on the rug, wiggled his little toes in the soft wool, started to dance and make joyful sounds. Someone said, "Oh, it's the happy rug dance!!" and David woke up. He sat up in bed, looked at Theo and smiled. He looked down at the rug and made some approving comment like "mmm, pretty, yea nice." Theo said "Stand up David," in the vibrant way two year olds can, and David did! He squished his toes in the rug, interacted with us, and was alert for the next 20 min or so.

This was the first time I realized that even now, David loves fun, and may respond to jubilant energy from people, and so not to keep that from him. We had been mostly solemn and silent in the room with him. Good to know!

So, Wednesday night when I came back from a Come Boating! meeting, I opted to share exuberently the topics of the meeting. It was a recap of the past year, and part of that is that Community Sailing which was started by David in 2009, grew this year to 7 skippers and 100 or so people out on the water who wouldn't otherwise have had the chance. Also, youth rowing which David and Cameron started together in 2009 has grown to 1-2 boats each week, 30 or more kids rowing this summer, and one boat continuing to go out even now at the end of October!! When David heard all this he said "mmm, cool!" and some other appreciative bits. We could tell he was taking in the impact he's had, and hearing me when I said "David, you will live on in all of this. We will think of you, and appreciate you for years to come. You are such a wonderful youth sailing instructor, adult instuctor, and rowing cox for the children, always making it light and fun!!" It was beautiful to feel him shining hearing those words. (If you don't know about Come Boating!, it's a group that helps to provide public access to the water here in Belfast, and is what we were up to the day he first asked me to dinner!! Check out comeboating.org if you want to know more. There are some great photos!!)

Thursday my father came to visit at the same time Gary and Glennon were here. First we talked in the kitchen for a bit, and then moved into the living room where David was. David wanted to get up, and we had the thought to take him outside in the wheelchair as it was beautiful and sunny. Gary and I were trying to figure out the best way to help David, who's legs are weaker every day, into the chair, and my Dad stepped in. He said "Stand behind him, and lower him into the chair, he'll feel safer sitting down that way." That took two of us, but was the perfect thing. Then he started explaining how to place his feet for comfort, and to drive backward for safety through doorways, so I said, "Dad, do you want to wheel him?" and he did. I asked my how he knew all this, and he said he didn't know. My family had cared for my grandmother when she needed it, but he said it wasn't from that. We spent a sweet warm half-hour outside, listening to Gary play, and then it seemed time to come in. My Dad again wheeled him in, helped him to sit on the side of the bed and then did something I've never seen anyone do. He wrapped his big strong arms around David, one behind his back, and one gently under his knees, and as easy as could be, he layed David back in bed with not even a grimace. Now, I have never seen my father do anything like this before, and was pretty much in awe of the whole thing. In the next room, I hugged my Dad and thanked him, and we cried together about how amazing it is to care, together, for this most wonderful husband of mine. The other thought that came at that point for me was, "I've never seen you, Dad, do a nurturing thing in your life." That felt pretty intense, and I wasn't sure it was true, and it certainly didn't feel kind or helpful at that moment, so I chose to keep it to myself. But as I thought my Dad was leaving, I made my way to the kitchen, sat in the corner curled over my knees, and cried.

My Dad and I have never been super close. I know he loves me, and will be there for me in a crisis if I need him, but mostly he's always been absorbed in his own life, often overwhelmed, and not very available. So I cried about what I think I've missed not having him closer, and I cried in gratitude for the crack that David's dying seems to have made in so many people's hearts, the crack that lets the light in. There is so much love available here, and connections that David would be so happy to know are happening here because of him. Thankyou thankyou to all you open hearted amazing people for loving the way you do, and showing up for this cranking open of our hearts. And thankyou Dad for showing your tenderness and your strength, in a way that only you could do.

love to all,

Tara

a Baby!!!

David's daughter Lucretia sat on the bed, close, with David, holding hands, gazing at him, for many hours two days ago. Last night when David's sister and brother in law where here and the news came in that labor had started, there was a happy dance in the living room, including David who was very happy and excited that the baby was on it's way!! Today she gave birth to an 8 lb 4 oz baby boy around noon!! Everyone is doing well. Today David has been mostly sleepy and unresponsive, and didn't respond to the news that the baby had actually arrived. Will talk about it again tomorrow.

David really wanted to live to see this baby. Now he's still alive, and the baby's here. If you want, please send prayers that he's alert enough to greet this baby he waited for so long. If David was here, he'd probably say "Please envision me alert, peaceful and happy, holding my new grandson!" Group prayer has worked so well for David in the past, maybe it will help this time too.

Thanks. Tara

comments!!

Thanks so much to our friend Greg for checking into the lack of commenting ability. Greg says:

1. To comment, you select comments which shows other comments plus a window to comment
2. You comment.
3. You select a profile. (I selected Name/URL and wrote Greg, left URL blank)
2. Then post.
3. Then it asks you to type in a word (prevents spam).
4. You type the word, press post comment again.
5. Comment is posted, page comes back with your comment and another blank comment window. There is a note in black type with a yellow background saying it was published.

I posted using two browsers, firefox and safari. Both worked identically.

Hope this helps! It's so nice to have comments working again! Let me know if you still arent't able to comment. Tara

photos

The first photos are early October, David's gradeschool friend Andrew was here to visit and David said he'd really like to go sailing! Our friend Joanne was game for Captaining Cosmos, we invited some willing sailors, and we were off. The last two photos are yesterday fiddling on the deck in the sunshine. Oh the difference a month makes . . . We are incredibly lucky to be sharing this process with so many loving people, all doing our best to provide a good quality of life for David till he doesn't need that from us anymore.

update

Hi All,

Just wanted to say that for David, things are pretty much as they were a few days ago. There have been sweet moments and hard moments and hopefully I'll get to write a few of those down in the next couple days. He's still walking a little, eating a little, using the toilet, and coherent for short bits each day. For me, it's been an emotional couple of days and I've just been too rattled to sit down and write. We are now needing coverage night and day, and it's a task to fill that time. But just in case any of us thinks that's hard, I just made an SOS call to the hospice nurse who said her last conversation was with a woman who is the only caregiver for a person with demetia, 24/7. I can't imagine it. Here there are so many loving hands, and still, sometimes some aspect of this is more than I can handle gracefully, and I need to regroup.

Today I got out for a walk in the amazing fall sunshine, and ended up fording a stream. While in the middle of the passage, with a strong current pushing against my legs, I looked upstream and at the water rushing to me and past me. "This feels so good", I told my friend, " being in the flow. This is how I always want to be, the open channel that Life moves through". And I told her about how I'd been praying with some of the hard things that were happening, that I could just be open to what I knew to do, and be willing to do that. I shared that I realized I've been resisting some things, most of them subtle, that are painful and leave me feeling restless and agitated. I could see that pattern, and in the seeing, return to myself, or as I heard tonight, return to my capital S Self, the larger me that's connected to all things. Nice. So then I was breathing and aware of my body, mind, heart, peace. After that I noticed I experienced ease and clarity (till the arrival of the next resistance!).

Tonight it came in the form of trying to get David to use the commode before bed. I was the only person here (except for Cameron who is sleeping). David said he had to pee, so I helped him get up and over to the seat. The getting there was hard, me moving David's limbs, giving instructions, insisting that it was safe to sit down, there was indeed a firm surface beneath him, etc. None of this did David seem to appreciate, and he told me so. It's hard to know how much he's right about and I can do something to change, and how much is the fact that giving up control is really hard for most of us, and particularly for David who is so strong willed.

One thing the nurse said when I called asking for help, is that it's hardest for the closest people to care for the one who is dying. She said "I've been a hospice nurse for 20 years, but when my mother was dying, it was really hard for me to care for her". And I thought I was just missing a gene! In this case it occured to me that David and I have the history of living side by side for 2 1/2 years and while we have been deeply sweetly close, we also struggled over day to day trivial things. Lots of little stuggles. So no wonder that when someone he has less history with suggests that he do something, he does it, and when I suggest the same thing, he won't budge. That of course is frustrating for me and so we're in a familar struggle. And someone pointed out this week that I seem to want to control many things, and suggested I stop. I'm glad for the reminder, and I am trying, and am aware this is a long time stuck place for me.

Ok, a little sweet image: this afternoon David's friend Gary came to visit with Glenon, his wife. At the same time my father arrived. It was a beautiful sunny day and we sat outside for 30 mins or so, David in his 1st wheelchair ride at home, all of us gathered around, and Gary playing sweet fiddle tunes! At some point David started smiling at me, really intently and then he winked. Gary saw it too, and at first I thought it was a twitch but he did it again, and then Gary said "David, did you just wink at Tara?!! I think you're flirting with her!!" David smiled some more, and we laughed and laughed in joy and amazement that a guy who is hardly coherent could be clear enough to flirt with his wife! A nice moment to remember when the hard times come.

That feels like a good thought to go to sleep on.

much love,

Tara

no comments

Hi All,

It seems the blog isn't accepting any comments right now. I apologize for this as I know its frusterating to want to share some thing and not be able to! My email is tarademere@gmail.com if you want to write to us directly. And if you are really good at blogs and know something that would be helpful, please let me know.

love to all, Tara

A Powerful Dream

Hi all,

I did spend one very nourishing night in Portland with my good buddies there, and arrived home late last night. Thank you friends for loving me up, and thank you to the Yentes/Fulford bunch for being here while I was away! I'm told last night over dinner, David, his children and their partners and children, Chris, Jonathan, Margaret and Charles all sat around sharing sweet stories and appreciations of David. It seems like lots of love and connection going on and so that's good for everyone. David said there was a lot of laughter and seemed pleased by that.

When I arrived home David was resting in the living room, and Tyler was in the kitchen playing violin. What a sweet experience I imagine it is for David, even if he is only partly concious, to hear his son playing beautiful music in the house.

Then last night with David I didn't sleep much because he coughed a bunch and I got up to check on him often. Usually he was asleep again, but meanwhile I was awake! Uggh.

Tyler and Elsie spent the night, and we all had breakfast together this morning. It was so sweet to have the young people with us!!! David was somewhat alert, but also more confused than he's been, and imagining things occuring that the rest of us don't perceive. He did have a bit of time outside today, and a nap with his Dad in our big bed.

I received this email tonight from a friend who, at our wedding reception, stood up and said that he knew David and I separately, but mostly regarding spiritual commonality in both cases, and when he heard that we were getting married, he said "Well, of course!! You two are so much alike, that makes total sense to me!" Michael has just traveled to Japan with his Japanese wife and children, planning to spend three years. I will include his email to me and my response, as it will pretty much bring you up to date with the state of things here, on the physical plane, and on the spriitual plane. Thank goodness we have both.

Dear Tara and David,

It's 3am. I woke up suddently a few minutes ago from a powerful dream with you, David. You wanted to take one more dive from the high boards and you did it (amongst some resistance by the officials and some in the crowd!) in the middle of a diving meet. You were curled up on the bottom of the 20 foot pool and I asked you Tara if I could jump down to help him. After you said yes I jumped, swam to the bottom to you David and you had a big smile on your face. I had a hero's vision of carrying you to the surface but when I asked you David, if you'd like that, it was clear you were in a place of peace and didn't want to be rescued. You were ready to go. I held you for a few seconds, looked you in the eyes and gave you a kiss then pushed myself back up and immediately woke up.

While with you at the bottom of the pool, there didn't seem to be anything you were trying to say to me. It was enough just to be with you in the moment. Later, upon reflection, I got the message either from you directly or inspired from you and supported by the support of Tara's grace to try right living! What the heck? Just try to live my highest potential for awhile and see how it feels. In memory of you David, I will take that on! Thank you!

In the midst of trying to be present with you there was this pressure of being seen as 'doing the right thing' since this happened in public. Even though I knew I was doing the right thing by not rescuing you in the back on my mind there was the thought, 'what will everyone think if I don't bring him back?'. That seems to be a constant concern, or at least thought, living here in Japan.

This felt like the final good bye. If so, bon voyage! I love you and always loved being with you. You gave me so much through your authenticity and constant striving for life. May your life be an example for others to follow.

I love you too, Tara! My your life be an example for others to follow as well! I think it is. May you get all the support you need in these times.

With love,

Michael

P.S. Tara - feel free to send this to anyone.

Hi Michael,

Yes, yes, yes. Isn't it amazing that we could be that connected from across the world??!!! A True Oneness Experience!!!

This is actually helpful for me the way things are right now Michael. Just tonight I was sobbing on the phone with a friend because I was wanting David to tell me what he wanted in a situation where he was discontented, and he couldn't and I couldn't get clear about what to do. After a long talk with her, and this email from you I'm understanding to 1, know that it is enough for him, and for me, to just be with him in the moment, and 2, that I now have to decide for him to the best of my ability, how to care for him and keep him comfortable while he departs his body, even as it appears to be a painful process. This is such an intense shift from equal partners, husband and wife, that I havent' been able to wrap my head around that that is now my role here. And sometimes he is clear and our friend says that's ok, just don't expect him to be in the next moment. Mostly I need to decide for him, to take care of him, to mother him essentially. Wow, ok, I can do that, I just need to know that's my role.

I love that you saw David with a big smile on his face. Whenever I talk with him about the idea (and a belief that we share), that his soul if just fine, totally whole, and that he will be leaving this body which is a temporary "costume", and returning to being one with the essence of himself (God), he breathes deeply, sometimes smiling, clearly content.

Thank you Michael, for loving us so deeply, and for sharing yourself in the world this way. And yes, David would love for you and all of us to take the message of living our highest potential, and right living (what ever that is authentically for us), and run with it. That is what he has tried to do, and since we are all leap-frogging off each other, go for it, brother!!

With so much love, Tara (and David)

- Show quoted text -

coughing up blood

Quick update. David awoke coughing up blood this am. This will likely worsen with time, and is probably the cancer moving into the lungs. He bled for an hour, rested for a few, bled some more, rested some more, had the hospice nurse, me, then his children, parents, and 1st wife Chris here for many hours. Then tonight the UU Choir came and sang, 20 of them!! It was powerful and beautiful and David sang along to the first song, and then got up and danced to "So Glad I'm Here!" David made eye contact with most of the singers as he wandered around the circle. It was quite fun and magical. As he started back toward me I noticed his mouth was red, more blood finding its way up and out. The choir stayed for just three songs, which was perfect. And after they left, I sat there, holding hands with David and cried, mother Margaret on one side, Chris next to David on the other. I thought "they'll always remember you as the man who danced, David." and somehow that was just so sad to think, I guess because when he's gone, he'll be gone. No more David dancing in the streets. There are people who come up to David at the Co-op and and tell him how much they enjoy watching him dance at Summer Nights (music in the streets of Belfast). He usually wears these silly yellow shoes and people remember. Often once David starts dancing, other people venture out, and it's such a blast! One time he and I even danced in a rain storm on the corner of Main St and High. A band we liked was playing under a canopy, and we just danced, me in a long dress that was soaked before long. It was magical, and the musicians remind me of it sometimes, how great that was for them, and how they have hoped it'd happen again one day. So lots of tears here today, and also lots of love.

Due to David's need for more care, he'll be staying here at home this weekend with shifts of capable family and friends, usually more than one at a time. I'll be two hrs away, and can return at any time if needed.

I'll write again Sunday or Monday.

much love, Tara

The Swan

"The Swan"

by Rainer Maria Rilke

This laboring of ours with all that remains undone,

as if still bound to it,

is like the lumbering gait of the swan.

And then our dying—releasing ourselves

from the very ground on which we stood—

is like the way he hesitantly lowers himself

into the water. It gently receives him,

and, gladly yielding, flows back beneath him,

as wave follows wave,

while he, now wholly serene and sure,

with regal composure,

allows himself to glide.

http://being.publicradio.org/programs/2010/wild-love-for-world/poem_the-swan.shtml

Things are good here. Beautiful days with golden and red leaves, warm fires at 6 am and warm sun at noon. Lovely loving friends and family. David clear enough to say he loves us over and over. And thank you, and I'm sorry. For a moment he's the David I know so well. The one who listens deeply, looks me in the eye, opens his heart, will hear anything and love and love and make sure I feel him here. And then he's gone again, blank eyes, empty space.

A friend sent this poem today. It's beautiful and amazing, familiar. And I also notice I feel sad and angry. I'll include here what I wrote to him: Thank you for the poem. Tears came so immediately, recognition, . . . and then confusion. It seems right to me that this isn't our true home, that we are akward here, it's a struggle so often, this being human. And the going home, familiar, serene. So then sadness comes and I wonder, why are we here then, if it's so hard so often? A relief to think of David going home soon to be gently received!! And what about the rest of us?? :-) !!

We are appreciating the hospice support people. They are helping to make sense of all this, and also acknowledging that there is some that we are to experience, and not make sense of.

Love to all,

Tara

"followers" not working properly

I just want you all to know that we have heard that some people aren't getting these blogs sent to their email address even if they are "followers". So, that won't do for getting news out. We will figure out something different that is more effective and also simple for me to do!

Also, thanks to all for notes and calls and visits and food and love and sweet wishes and hugs and flowers and time and reflections and all the rest!!!!! It is wonderful to not feel alone in the midst of this most poignant time with David.

The news today is that David's body is functioning pretty well, eating, sleeping, walking, thinking and eliminating. He is quite alert in the awake times, and rests when he is sleepy. I'm planning to spend a couple nights in Portland this weekend and David is going to be with his folks. A little space will do me good, and we have been wanting a rug for the livingroom so we can be comfortable on the floor. I have a friends in Portland who know where to shop for good deals, so we'll do some of that. I'm hoping to take 24 hrs off every week or so, either for David to be with someone else, or for me to go off. If you'd like to be part of that, please let me know.

It's a beautiful sunny crisp day, 7:45 am now and David is up and washing a few dishes in the sink. He says "I'm really to weak to do this," and keeps on. Sometimes his futzing around is frusterating to me. He doesn't like how the jars are now arranged, he wonders why I didn't soak grains last night, he seems uncomfortable. I'm uncomfortable. And so I find myself breathing to calm the thoughts that are arriving full speed ahead. Be here now. Be here now. Woman in chair, sun streaming in, fire crackling, washer tumbling, body a little achy, breathing, ahhh. Breathing. Available, to self and others. mmmm.

Saturday

This morning David and I had a sweet snuggly morning time curled up in bed. He still has a bad cough, so our quiet moments were regularly interrupted, but it was nice to be close just the same. From my perspective he is the clearest he's been since hospice got involved 2 1/2 weeks ago. He says he's very foggy and confused, but I see a combination of clarity and confusion. At one point we were talking about his inquiry yesterday about "just lying down and dying." David isn't sure he can actually do that, but he thinks it may be worth a try when he's ready. First he wants to see Lucretia's baby. Anyway, at some point when we were holding hands and sitting with our temples touching, David said solemnly, "I hope things go well with Cameron." Knowing he meant "After I'm gone," I had a flood of tears thinking about how amazing it's been to have David in our lives as a nurturing, smart, fun, loving man, and how incredible it is that one day soon he won't be here. I imagine it will be both a relief and a great sadness when that day comes.

Margaret and Charles spent the afternoon here. It's lovely to have them nearby. They are deciding when exactly they will head off to Florida, and by car or by plane, probably in early November. Then they will return when things get closer for David.

Tara

tears

I notice that I said I'd try to write every day a little bit and that hasn't happened. I apologize to those of you who'd like more frequent news. It's fine to call too if you want, and I'll do my best here.

Yesterday David was quite physically able, getting around well and staying up for many hours at a time. Medications have been changed hoping to gain David increased mental clarity. It seems to have worked somewhat. He is able to talk a bit more about how things are for him, and hold a short conversation. Mental processing is still challenging for him. He can do simple things he's done many times before, like stir soup at the stove, but needs assistance using the inhaler that requires multiple steps to work properly, and is something David has never used before. Last night I found him in tears saying that he was unable to dial the telephone. He had been trying to look up a number on his cell phone and then dial it on the land line, and frustratingly wasn't able to. He asked me "How can this be?" And I hugged him and listened.

I'm told there will be so many things that David will be asked to let go of. In my clear moments I can see that each letting go can be horribly painful, if the thought is that it shouldn't be like this. Then I recall Byron Katie, one of David's and my favorite spiritual teachers lovingly saying "I don't see a problem" as she sat with a woman in the hospital with one leg swollen to 3 times the size of the other. Katie really sees like that, knowing each thing is as it should be because it is right now, and in that experience peace is possible.

So I hugged David and listened, and then I asked him if it is ok, all of this. . .? and he could almost find it. So I breathed and asked him "Can you really know it's a problem that you can't dial the phone? There will be so many things to let go of, each one painful, . . . or not. Go in and see David, what do you find?" And he started to breathe deeper too, and I could feel him coming home, if just for a moment. " This is the support I need", he said, "with you or other people helping me remember to do this." And I knew he meant that he'd felt peace in the midst of the confusion, if only for a moment.

If you've never done Katie work, this may seem like too much, as it is a huge brain stretch in the beginning. On our first date, over soup, David asked me about my life, in particular my spiritual life. When I rattled through "Alanon, Unity Church, A Course in Miracles, Eckart, oh and Byron Katie, I did her 10 day school in 2003" his eyes lit up! David had been doing Katie work for 7 years, and was thrilled to meet someone else who loved to "have her mind blown" and wake up a little at a time in the process. If you want to understand this more, there is a great website where you can listen to Katie doing the work live with people. If this is foreign to you, it may make more sense after that. www.thework.com For David and I, it's been one of the ways we connect, and support one another all along.

"Let's go have dinner" was his next request. And so we did.

After dinner he started to cry again, talking about all that is being lost, and he asked "Do you think I can just lay down and die?" I said I didn't think he could decide when that would be, but that, yes, that seems to be on its way. And I thought, "Oh, this letting go is so hard for us humans." I had promised Cameron I'd watch a movie with him, so I dialed David's friend Gary in Alaska, trusting that sharing love and conversation would be soothing to David. When David came upstairs later he seemed in a peaceful space, and ready for sleep.

visit to Maine Med, and a hike

David visited his Dad at Maine Med in Portland, catching a ride to and from with friends. It was a bit of a stretch to go, but he was very glad to be with his dad who will likely be coming home Monday. David's thinking and physical ability have improved steadily over the past week, and he is now quite able bodied again! Amazing. Yesterday on the way home from Portland, he and his friend Anne from Boston made a stop at Bradbury Mountain (which perhaps is really a hill), and did the 1/4 mile hike! This is quite a change from not being able to walk at all without support 10 days ago, and using a walker for everything a week ago!! He still has a deep cough, and is confused at times, but once again is living more than dying as much as we can tell.

I had some nourishing chuncks of time alone while he was away, so I'm living a bit more fully too. And it's really good to have David back as much as he is, for now.

Tara

time frame

Dear all -- actually, things are not as clear cut as they sound above. Today I'm not so sure about that plan to stop antibiotics and transfusions and I might not be dying --at least not in the time frame named above. Stay tuned... will write more very soon. David

a road trip

Yesterday afternoon David headed to Portland, getting a ride with a friend, so he could visit his father who had surgery on Tuesday. David was feeling quite well, we set up plan A, B and C and mobilized our friends in Portland to help if necessary. David met up with his mother who is staying down there, was offered a cot to stay over at the hospital, and will be returning sometime today. Charles is doing fine and expects to be home within a few days.

For me, it's a good exercise in going with the flow. For David that means following his heart, and his heart was with Charles! Might as well be where our hearts are!

Also, David's friend Gary visited yesterday and David shared his current "strategy" with us. His plan is to take antibiotics if needed, and get a blood transfusion if needed, to help him stay alive until Lucretia's baby is born. Then he said he'll stop those things and "will probably die of pneumonia like most people with Multiple Myeloma." Gary and I both agreed that that sounded like a reasonable strategy. And it may change.

love, Tara

Frazzled

I just realized I should probably say how I'm doing. Sometimes I feel frazzled like my nerve endings are all raw. The first couple nights after things shifted for David last week I felt like I used to after attending births- full of adreneline and not able to come down enough to sleep. The past few nights I've slept well, so that's helpful. I've cut back my hours at the store where I work into fewer days and shorter days. Yesterday I went there for 4 hrs, had good folks to be with David, but found myself feeling repeatedly afraid that things weren't ok at home.

11 days ago I had a nasty respiratory challenge where I spent one entire night worried each breath that it wasn't enough oxygen to get me to the next breath. I kept talking to myself, trying to stay calm, and litereally praying that I would make it to the morning. The next day I saw a doctor and learned that indeed I had severly restricted oxygen intake, just a few points away from justifying an emergency room visit. It has taken 10 days to get back to close to normal breathing, still sometimes I cough and cough, and perhaps some of the fear is left over from that. Death, so close by. Some friends have mentioned that in Chinese medicine, lungs are grief. So it's no surprize that I, who have never had resiratory vulnerability, am having it now. And I'm trying to find ways to nurture myself and to connect with the deep well of peace, ease and guidance that I have experienced as always available. I get there, and then I don't, back and forth like we all do, just particularly poignantly due to everything that is going on here.

We are going to hire someone to be here some of the time so we aren't so dependent on friends and family to cover the 24 hrs a day that's needed. We hope this will free us all up to be with David, to be relaxed or at least not totally fried for however long we are needed to be in super-care mode.

I am hoping to write a brief update most every day so you will all know what's going on.

love, Tara

stabilized

Hi All,

Just wanted to let you know things have stabilized a bit here with David. He is comfortable pain-wise, has times of mental clarity, is able to walk without a walker, and has been outside quite a bit, even raking for an hour on a sunny afternoon when he wanted to be alone. Sometimes he is confused about what is happening, feels scared about not understanding, and about his loss of independence.

He is taking and making phone calls again, is enjoying some days in the company of a group of loved ones, and some days resting quietly with just one person bringing food and support.

Food is arriving at our house everyday from friends and family, and we appreciate it so much. It's amazing after a day of coordinating care for David, caring for David, answering phones, talking to nurses, and trying to keep our home running smoothly, to know there is food ready to warm up, and I don't need to worry about feeding us. Thank you so much everyone!! I have heard from some folks who have loved David a long time, that they are so grateful to be making food and spending time caring for him, that it feels right to have some last sweet moments and some closure with their good friend. It's good for me to hear that, because our home feels like a community home right now, and I want people to feel comfortable being involved as they know to be.

If you want new blog entries to come to your email, and you haven't done so yet, please become a "follower". When David dies, and a ceremony is planned, this will be our primary way of spreading the word. Let me know if you have any problems with the blog or with signing up to receive new ones to your email.

Thanks, and blessings.

Tara