Honoring Our Marriage on Our Anniversary - August 28, 2009

Participating in a Married Couples Weekend, February 2003

It’s difficult – no make that impossible – to write this without crying along with letting the words flow. The last two wedding anniversaries that Craig and I had, he was in the hospital with infection surgeries. Last year he was in Intensive Care and didn’t remember later the little party we had in his room. This year Craig is probably more with me than he was last year! However, I’m still mostly commemorating the occasion by myself…with a little help from my friends. Am I feeling self-pity? Sorrow for the change in my circumstances? Pissed off that I’ve been “abandoned”!? Yes, yes, and yes. And yet, others are encouraging me to honor the good and celebrate that we actually stayed happily married for these 10 years. I can be in that frame of mind, too. I loved Craig’s smile, his hugs, the warmth of him against my cold feet, his passion, his singing and music, his thoughtfulness in making us tea in the mornings and evenings, his enthusiasm about yard projects, his commitment to keep trying to build unity even when it seemed impossible to me, his loyalty, his steadfastness, his peacefulness…. I have been so incredibly supported and encouraged and championed in these years. Whatever work or goal I wanted to take on and do, Craig made it possible for me to try. When we met, Craig was well known for impulsively jumping into situations. He was willing to totally shift this pattern, and we learned together how to be very proficient at making consultative decisions. He was willing to transform his relationships with his family, and working together with me, he made great progress in healing them. He had the strength and confidence and love to allow me to greatly influence him in positive directions. And I did my best to allow him to do the same for me. I’m a far better person today because of the years I spent with Craig and the gentle touch of his nature on mine. We did many types of service to others separately, but we did many together. We loved “projects”! We realized early on in our marriage that we were both very capable people, and others asked both of us to do much. We agreed to not say “yes” to others without consultation, and we created a set of decision-making questions to help us determine whether anything we said “yes” to would have a detrimental effect on our marriage. We felt that maintaining our marriage was a primary form of service to ourselves, our families, and to others watching us be happy together. So, it was important to us to not be on overload and overly outward-focused. Balance and moderation were vital. Craig and I were very compatible in many ways. We didn’t like watching television, preferring to read. We did not want pets in our home. We loved to pray together, and did our best to do it daily, even when one of us was traveling. We liked to be hospitable, although he was always more relaxed about it than I was able to be. He loved to give house tours, and it took some coaching for him to give me a few minutes to hide underwear or tidy up! We were highly intentional in creating a marriage that would work for us both. Before marrying, we wrote down a list of commitments for what we wanted our marriage to look like (see below). Before these years of illness and now absence, it was our practice to re-visit our list on our anniversaries to assess whether we were on target or needed to set goals to address something that wasn’t going the way we wanted. Our biggest ongoing challenge was being too serious and having difficulty with lightening up together! One year at a marriage conference, we learned that it was vital for couples to have fun with one another to stay happily married. Once we realized that it was the responsible thing to do to have fun, we did very well with almost weekly date nights! Doing the Marriage Transformation Project together was both a joy and a challenge (www.marriagetransformation.com). We were honestly thrilled to be making a difference for so many couples. However, we ended up using most of Craig’s vacation days traveling to do workshops. So, vacations got pretty non-existent in later years or we did runaway weekends. Gradually over time, the day-to-day passion of the project became mine more than Craig’s, and we were beginning to have consultations about whether there was another passion that might draw him more fully into participation. With the marriage project, he became primarily background support with finances and planning discussions. I wonder now what his passion will be as an angel!? Craig and I were committed to having a happy, low-conflict, peaceful marriage, and I think we did great at achieving this. He did learn the skill of letting me know when he was upset at me. I had less trouble in that area! But both of us were good at clearing things up promptly, forgiving, and moving on. Being good at consulting and sharing together helped a lot. We had some pretty heavy issues over the years…finances, my parent’s divorce and father’s re-marriage, his father’s death, his son’s brain tumor, running a home-based business, kids living or staying with us, blending families, the parental consent for marriage process with two of our children, and finally Craig’s own brain cancer. So, it’s not that there were no issues in our lives. It’s just that we did well at facing them and holding one another as we worked through them. Before we got married, we recognized that we were likely to have a handful of challenges living with one another. He wasn’t all that into cleanliness and thought I’d be obsessive about it. I eased up…somewhat…and also showed him lots of benefits for it, so he adjusted well J. He was concerned about my judgmentalism…well, what can I say…it’s still pretty automatic, but I’m much better now at shifting into being loving and accepting after years of his example and influence. It took time within our marriage to recognize that while Craig was very gentle and laid-back in temperament, he never liked to do anything slowly. He walked faster than me, always eager to get to the destination. I mostly learned to call him purposeful instead of impatient! But, it was a test for me at times, as we then didn’t hold hands on walks as often as I would have liked. I suppose when I reflect on moments that I loved the best, at least those which can be mentioned publicly!, I am transported to places where we traveled and spent time. I remember our being in Hawaii early on in our marriage with our four parents. The helicopter over the lava flow, swimming with the dolphins, diving among tropical fish, jumping into enormous waves, and watching the waterfall…it was splendid. We branched off of a business trip of Craig’s and did a weekend on the Outer Banks of North Carolina by Cape Hatteras, where he got his Native American flute. We celebrated our 5th wedding anniversary at Lover’s Point near Monterey, California. We traveled to China and Florida to visit family. Later in our marriage was Israel and spending days together at the Bahá’í Shrines praying together. We recognized at that time that Craig was feeling very challenged spiritually, desperately wanting to feel more connected to God. The trip got him started on that reconnection, and the journey with cancer completed it. We began our marriage with the struggle to re-balance after our need to be together collided with the speed at which we connected after Craig’s separation and divorce. The whole family had healing to do. Craig and I made the conscious choice to not have further children, although at times it was a sorrow to not have one together, particularly for me. We’ve done our best to love each other’s children, and that’s been good. When the first grandchild came, Karida, we were delighted to be together as grandparents. When the second one came, Aidan, both Craig’s son (the baby’s father) and Craig were dealing with brain tumors, and it was more challenging to spend time together and to bond. With the third one, Giuliana, Craig is with her spiritually, but I’m being Nana “by myself”. Craig being gone as a grandfather for both the current and the future grandchildren is a major sorrow for the kids as well as for me. We ended our physical marriage with the family hugely healed, but with the test of Craig’s illness. We did our best as a couple to keep our marriage strong during cancer’s disruption. At times, I felt more caregiver than wife…but then taking care of his needs was part of being a wife. Throughout his cancer journey, as best as we flexibly could, we still dated, we still made love, we still consulted, we still prayed, we still moved forward with our spiritual development as people, and we still served others to the best of our ability. I then did the final physical service to him of helping his close friends with his body washing and shrouding and letting him go into the ground. Now he’s spiritually surrounding me, in guardian angel/protector/helper mode…just as he was here, but so much more powerfully. I have moments where I feel as if I’m having a normal conversation with him. There are times when I’m floating in the ocean and feeling surrounded by sunlight that I feel the light of his soul very present. Then at other times, my own grief or periods of intense emotions get in the way of feeling him near. It’s all part of the adjustment process. From a Bahá’í perspective, Craig and I are married for all eternity…our souls are connected because of the bond of love and friendship between us. From a family perspective, we are all adjusting to what this means. Some days I feel as if I’m still part of the blended family, and some days I wonder whether the rest of the family thinks I’m still part of them. I wonder about blood connections, marriage connections, love connections. Craig asked me to do my best to stay connected to his family, I promised to try, and I’m doing my best. Craig and I talked about whether I would re-marry (the Bahá’í teachings allow for this). We agreed to make no promises on the matter but simply to trust that the future would unfold and be clear as we went forward. He really wanted to ask me not to, though, which was simply a great testimony to how happy we have been together. I’ve been sad this week as our anniversary approached. It’s hard doing an anniversary “alone”. I was determined not to tie grief to certain calendar dates…and here I am doing it. It’s good for me to take this time to grieve, though. It’s also good to take this time to celebrate the really extraordinary accomplishment that our marriage has been and will continue to be. I’m grateful for the family and friends who encouraged me to do this writing. Much love, Susanne p.s. Here is my funeral tribute to Craig in case you missed it: www.claricomm.com/SpouseTributetoCraig.pdf FROM OUR WEDDING PROGRAM: Honoring Their Union: Susanne and Craig United in mind, heart, and soul, we affirm that the intent of our relationship is to create an extraordinary family. Our commitment is to: · Treat each other with love, honor, respect, courtesy, and integrity. · Support and encourage each other's personal growth and transformation and the transformation of others. · Honor and respect our own and each other's physical, mental, emotional, and spiritual needs and assist each other in meeting those needs wherever possible. · Fully express and share all aspects of our selves and our lives. · Deal with issues that arise as soon as possible. · Be fully conscious, fully present. · Maintain some time alone. · Cherish, honor, and respect our children by nurturing bonds of communication and love. · Build and maintain loving and open relationships with all family members. · Enrich our lives with separate and mutual friendships. · Pray separately and together daily. · Read and deepen on the Bahá'í Writings together daily. · Be examples of service to ourselves, each other, our families, friends, and communities. · Be playful, have fun, and incorporate humor into daily life. · Act with integrity in all things, particularly in our finances, our work, and our service commitments. · Enrich our lives with the arts. · Be patient, accepting, and nurturing, maintaining the constancy of our relationship through times of adversity and when we are not being our best selves. Fill Thou, O God, our homes with harmony and happiness, With laughter and delight, With radiant kindliness and overflowing joy. That in the union of our hearts, Thy love may find a lodging place And Thou Thyself may make this home of ours Thine own. ~ George Townshend

Susanne’s New Blog – August 13, 2009

Shortly after Craig’s soul flew to the Kingdom of God, the family agreed that I should stop posting messages to this blog. However, recently through an intuitive friend, Craig asked me to keep blogging so that all those who had been reading of our journey would know how I was doing. I’ve agreed. However, I’ve decided to set up a new blog instead of continuing this one.

You can subscribe to receive postings via email or simply check the blog on occasion. The link to Susanne’s Boat Ride is www.myboatride.blogspot.com. You’ll have to read the first posting to know why I picked that name!

Love,

Susanne

Michelle's 1-Month Tribute to Her Dad, August 1, 2009

Dear Friends:

We decided as a family to end blog postings for Craig's blog, but sometimes there are worthwhile exceptions! For those who are wondering, I'm doing well...having a granddaughter on July 16th helped! My emotional experience is much like Craig's daughter Michelle describes below...except that I also have the "practical triggers" of emotion going on while doing thank you notes, reading condolence cards, and handling the myriad of details of completing the affairs of someone's life. Craig's bedroom is now back into being a prayerroom and is far more special for his time spent in it. I'm grateful for the comfort of having his soul nearby. I hope you'll appreciate Michelle's reflections.

Love, Susanne

Reflections on the life and death of my dad

It’s the one month anniversary of my father’s passing and I had the bounty today of reliving the whole story for a dear friend of mine, and decided that it was time to write about my experience for myself and anyone else for whom this will touch.

I will start recounting my journey by saying that I am comforted by my belief/certainty that my dad is not gone – he is just in another spiritual world, but that (as I tell my daughter) he can still see me with “special eyes”. Therefore I still have my father – I will just have him in a spiritual sense until I join him one day in that other world. It is hard to realize that I won’t see him physically, and that will always be painful (especially at significant occasions, or maybe just silly or inconsequential ones..) but I have to say that his death was such a blessing…a blessing to have had the healing time we all needed in our relationships with him and each other, a blessing to have had him as a father, a blessing to have been with him at his deathbed while he moved to the next world, a blessing that he did such an amazing job of dying…

This is not something that we tend to talk about – dying well. But since all of us have to do it at some point or another, we might as well do it well. And my dad did, and his journey to this point was incredible.

As you probably know my dad was diagnosed with cancer a few years ago and journeyed well with it (he refused to call it a fight because that denotes a struggle/war and he was peaceful by nature). He was strong, courageous and radiant through the whole process. He spent MANY hours in prayer and meditation and was content with God’s plan for him. I use the word content when describing him many times and what I mean by it is not happiness (who actually is happy to leave behind one’s loved ones?) but a inner serenity/calmness/peace that God will provide and protect him and his loved ones. When word came from his doctors in February that there was nothing more they could do, he was content and spiritually radiant. Of course he was sad, sad for what he would be missing here: being with his children, seeing his grandchildren grow up, having more wonderful years with his wife, being able to have more years of service to others (something that always gave him great joy). But since the verdict was given he was determined to die well.

Many times people die with things unsaid, unresolved, unfinished. My dad (and all of us) had the opportunity to say what we needed to say, resolve things that were not, and finish every thought, emotion, and story. In the months after my dad’s prognosis was considered terminal, he went through a spiritual transformation – something that he had always yearned for. He had always yearned to feel close to God, to feel in His embrace, to express himself emotionally and spiritually to those around him – yet he always felt like he got in his own way. He had a hard time expressing his feelings and never truly felt the connection to God the way he wanted to (even when on spiritual pilgrimage to the Baha’i Holy sites). In the remaining months (we had about 5 months with him as he was dying) he was finally able to express what he wanted to, he became physically affectionate (the first time in my life that he stroked my back or freely held my hand), much freer in saying “I love you”, “I’m sorry”, and “I’m proud of you”. These last two were for my brother who had been estranged from my father for many years. They were finally able to make amends and truly love (or at least finally express the love they always had) for each other after 15 years of misunderstanding and pain. This healing was so important to them and to all of us – and my dad made sure to make it happen. Each of us in our turn (my sister and I, my mom and others) also spent time clearing up old issues, forgiving him for past things (no parent or spouse is perfect), asking for forgiveness for things we had done, etc… There were many tears but at least we had the chance to do these things while he was still with us. And that forgiveness allowed me to truly let him go when the time came…

Many people become bitter, depressed and sad in their final time here on earth, but he was determined to die with “his eyes wide open”. Spiritually he was so radiant and content in his final months, weeks and days. At a special “going-away” party that we held for him where 300 people attended, he was the one consoling everyone who came to see him. He was content, he was thanking them for all the things they had done for him over the years, he said he would miss them and would pray for them from the next world. I cannot really explain it because it seems so surreal that he would be so calm, in a world where people fear death or can’t bear to think of it. But he knew that he would not be going into oblivion, he would be in the next world, which as Baha’is we believe is as close to us in this world, as we are to a baby who is still in the womb. He would not be able to physically touch or speak to those whom he loved, but he would be near and reunited when they joined him in the next world.

In his final few months he increasingly lost his ability to walk and speak (the effects of the brain tumor) but his eyes still sparkled. He did everything he could to not be a burden on others (though of course he was dependent on us (mostly my step-mom) for care). He would get frustrated, especially when we would try to get him into bed, help him eat, etc.. (things he’s been able to do since was a child!) but he would never take it out on anyone or really get grumpy. His greatest frustration came from not being able to express himself in words anymore (now that he had gained the ability to finally express himself!) but as his speech diminished, the expressiveness in his eyes got stronger. Until finally on his deathbed his eyes were the only way he could communicate.

In his last week he had chosen to stop taking his medication and to stop eating – this is not uncommon for someone who is nearing death as they lose interest in these things – and my step-mom honored his request (which must have taken great courage/detachment on her part!). A few days later it seemed that his hours were numbered and all of us kids assembled (I drove in from Dayton, Ohio, my sister from Washington DC and my brother lived locally). When I came into the room I remembered being struck by two things 1) how still his body was (he was not able to move any of his body anymore) 2) how expressive his baby-blue eyes were. He was clearly with us and was very “present”. He was not agitated, he was not in pain, he was – as always - content. I was very sad when I saw him – it is very tough to see a parent (especially one who is so young) in such a state. I held his hand and cried for a long time.

We (myself, my sister, step-mom and another dear friend) ended up having the bounty of being with him for 2 days and were there at the amazing moment when he passed. It was such a spiritual moment though physical all at the same time. It was as if we could feel his soul moving on, while we were there to hold his hand and cry, and sing him to the next world (his greatest joy was music!). I feel blessed to have been able to “birth” him into the next world. I was originally worried that I would have a hard time of it. I’ve never been near someone who is dying nor had to deal with death much in my life. But being able to serve him in those two days was such a blessing. I sat with him, sang to him, held his hand, prayed with him, laughed with other people who were caring for him, wiped his forehead. And he died with a smile on his face…

I will always miss him and will always keep his memory alive by telling stories about him to my kids. About how he would sing every day, how he played the guitar, flute, dulcimer and recorder. How he was always generous with his time, energy and resources. How he showed his love through his actions and would always do everything he promised to do. How he was watching his grandchildren grow up from the next world and that he loved them and were proud of them. That he was always working towards creating unity between people, creating positive relationships, creating better communities. How, as his headstone says “He lived to serve.”

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In this last month since his passing, I have been doing better emotionally than I expected – in fact, it seems that some of my dad’s contentment has rubbed off on me. Not all the time though: I have times where I am sad, where I cry, when I am upset about what we won’t get to see him at (my daughter’s next birthday, my sister’s wedding). But on the whole, when I think back to those last days and hours with him, I am happy. Sometimes I feel guilty saying that, but if this journey allowed my dad to have the spiritual transformation he always wanted, the healing our family needed for so many years, and the blessing of peacefully helping him into the next world, then why shouldn’t I be happy? Death has to happen to all of us, and his could not have been more amazing or more of a blessing for those he loved. True happiness is spiritual and all of our family (now in two different worlds) have been blessed with what we needed for our spirituality and personal growth. And when it comes down to it, the spiritual life of our souls is what matters in the long run, long after our physical bodies return to the earth.

I know my dad will always be with me and always loving me and my whole family. I miss you Dad...

Michelle (Farnsworth) Tashakor

Graveside Service – Lake View Cemetery – July 3, 2009

The morning of the service, I awoke to the sound of rain at 6 a.m. The forecast was for sunshine, so we had not ordered a tent covering at the graveside! I sent up a quick prayer for the storm to wander off, and at the time of the service, the skies were just overcast but not raining, thankfully.

Craig and I had not particularly planned the graveside service other than choosing Dustin Dornbrook to read the Bahá’í Prayer for the Dead. When it became clear that there would be close relatives unable to attend the funeral and only be at the graveside service, I delegated planning of the service to Michelle and Leah. They asked people to sing and play music, which was beautiful. There were additional prayers/comments offered spontaneously as well. A number of friends were also able to be there who had missed the service the night before.

I had a few moments of private farewell at the casket at the end. We all chose to leave before the burial…enough images in my head without that one added as well. You can see photos of beautiful and historic Lake View Cemetery at this link: www.lakeviewcemetery.com.

The video recording of the graveside service is attached at the end of the one of the funeral service, if you wish to watch it. Go to www.dejohnfuneral.com and click on Craig Farnsworth’s name. The video is under the Memories link.

As far as I’m currently aware, this posting is the completing one for Craig’s blog. It’s been a blessing to be in touch with so many people globally through this medium. Your prayers and spiritual/emotional support have meant so much to us. Watch in the future for our book on empowered ways to journey with cancer. Please keep me and our children in your thoughts and prayers as we go forward.

Love,

Susanne (susanne@marriagetransformation.com)

Honoring/Funeral Service Day, July 2, 2009

In the morning, Holly’s daughter Renee drove me to the cemetery to arrange for Craig’s burial on Friday. We just had to go to the office, not the family plot, so few emotional triggers – more like a business transaction.

A team of people began doing setup at 3:30 p.m. at the Slovenian Society Home where we had rented a hall for Craig’s Honoring Service. He didn’t like the word “funeral”, even when I pointed out that the word “fun” was in it! Since our focus was on honoring him as a person and his service accomplishments, “Honoring Service” was what we chose to call it. I was so grateful to have trustworthy friends and family doing those tasks so I could relax and not arrive until time for things to begin at 5:30 p.m. Craig, I, and the kids had decided not to do a formal receiving line. However, there was often a line that formed near me when I stood still! It was wonderful to greet so many dear friends.

Knowing that I would not be able to write effectively about Craig at the time of the end, I began writing my tribute to him months ago, read a draft to Craig then, and then edited it every now and then since. Members of our Toastmasters group greeted me before the funeral (they had canceled the meeting that night to be there), and I admitted that I hadn’t practiced my “speech” out loud or memorized it. They assured me no one would be evaluating my grammar or delivery that evening! Here is a link to the document of what I said: www.claricomm.com/SpouseTributetoCraig.pdf

Craig’s three children did a tribute to their Dad – with eloquence from the heart and many tears. We went through the family photos months ago, and they put together a wonderful slide show to display to everyone after they shared. (You can see it on the video – see details below.)

Craig’s best friend Nik Tressler had been working on his tribute to Craig for months as well. He had the opportunity to read it to Craig on one of his many visits to our home. I really acknowledge Nik for being open with his love for and grief about Craig. He arrived at the lectern with a roll of paper towels in hand for his tears! You can read Nik’s tribute to Craig at this link: www.claricomm.com/FriendTributetoCraig.pdf

At the end of the service, the pallbearers carried Craig out. Unexpectedly, the funeral director invited me to accompany them down the aisle – yet another difficult “good-bye”. I wrote a note to myself the following morning: “How many times and in how many ways will I have to say good-bye to him?”

The funeral home is testing a new service of taping and webcasting funeral services. Since this option is new for them, they offered to do Craig’s for no charge, and Michelle and I instantly agreed. With close family and many friends unable to attend due to pregnancy, short notice, and it being a holiday week, we were grateful to offer this and thereby include more people in viewing it and reaching “closure” with Craig’s passing. There is a link on the funeral home’s webpage - www.dejohnfuneral.com - to information about Craig and his honoring service and graveside service that will be available for quite a while. For only the next 90 days, however, you can watch a video of the funeral/honoring service and graveside service. Craig Farnsworth’s name is listed on the home page, and you link to all information from there. The written program is at the View Obituary/Notice link and the video of the service is at the Memories link. Please advise the funeral home or their video service if you have any technical difficulties (in other words, not me!)

The service began at 7 p.m. and was followed by refreshments, so it was around 11 p.m. by the time Holly and I got home. Michelle and Leah dropped off memorabilia and other things by midnight. So, Holly and I got into bed by 1 a.m. A very late night! But a blessed service for all of us.

Love,

Susanne p.s. Bless my computer support folks who have been teaching me how to do multiple complex maneuvers on the road that are allowing me to do this stuff from Mom's in Canada! Yay!

Preparation Day – July 1, 2009

Our friend and hospice art therapist, Barbara Trauger-Querry, arrived shortly after Craig passed. She helped guide the funeral home personnel and us through how to respectfully have Craig leave our home, and she supported us in our choice to watch him carried out. She had them leave his face uncovered so we could still see him. It was very emotionally wrenching to watch him physically leave our home for the last time.

I had done an extensive notification matrix, so we all began making the calls and sending the emails to let people know what had happened. With the funeral scheduled to happen in only about 36 hours so that burial was completed promptly (encouraged for Baha’is since we don’t embalm and because of the July 4th holiday), our pre-planning was a huge benefit.

Michelle (Craig's eldest daughter) and I only needed to have a brief meeting with the funeral home to finalize arrangements. The facility was on standby and then ready to go (the funeral home wasn’t large enough, so we had to rent a hall in the community). We already had the program created, so it just needed quick editing. Friend Janet Lyon was the logistics coordinator and already had an extensive team of people lined up to do refreshments and facility setup. I had the memorabilia for display collected and organized. We knew where to copy the handout of the program and which two people there knew how to fold and staple it properly. Craig had chosen all the participants, so we just needed to confirm their availability and willingness. All of us responsible for doing tributes as part of the program had already completed preparing them. There were enough last-minute things that came up to keep us busy in the middle of our exhaustion, that we were very grateful for Craig’s and my foresight in planning ahead.

A few posts ago, I mentioned a quotation that included the concept of things lining up in the hours of waiting. By the time Craig passed, almost everyone that he had designated to do primary tasks was available to participate…something that had not been true in the days and weeks prior to July 1-2. Nor would it have been the case by July 3-4.

It is a Bahá’í practice to have a ceremonial body washing and preparation for burial done by close friends and family, and we did this for Craig in the evening. After the morning experience of seeing his body leaving, I had very mixed feelings as I headed to the funeral home. The men who agreed to help me were Nik Tressler, Rick Eastburn, John Cunningham, and Ban Twaddell. Of the five of us, only Rick had done this before! But, everyone turned out to be wonderful companions for Craig and I in this process. I had read some general instructions and gathered the appropriate materials months before, but this was a very new experience. We prayed before entering the room and prayed before we began. I played some of Craig’s favorite music on a CD player. It was possible for me to participate in the washing, but I chose not to. The guys carefully and respectfully washed him head to toe. The funeral home had already shaved him, but the guys also shampooed his hair, and I dried it. Over recent weeks, his hair grew longer and very curly, and I cut a lock of his hair to keep in a pouch that our friend Cindy Hall sewed for me for that purpose.

After the washing and drying, I placed a gold ring on Craig’s right ring finger that was engraved with: “I came forth from God and return unto Him, detached from all save Him, holding fast to His name, the Merciful, the Compassionate.” (Photo at: http://www.bahairesources.com/products.php?id=3140 ) Rick took attar of roses (rose oil) that he has carried to various holy places in the world and sprinkled some on Craig’s body. We then needed to shroud his body, which is essentially wrapping it in cloth. I could use silk or cotton and chose cotton, which seemed more a match for Craig. I chose to use royal purple king-size sheets that matched the amethysts in our wedding rings. Cindy had taken the pillowcases and cut and sewed them into ties that we used to then wrap around Craig to secure the shroud and Craig’s arms crossed over his chest in place. Craig wanted to be buried with his prayerbook that contained petals from the Shrine of Bahá’u’lláh and a few other special items, so we tucked it inside the shroud. I pinned my “I Love My Husband” button to secure the flap of cloth on his shoulder. Rick sprinkled more rose oil on the shroud. We ended with a further prayer followed by song with me holding my hands on both sides of Craig’s shrouded head. I had invited Nik to lead us in song, but he was too emotional to do so. I then led us all in singing a Bahá’í prayer: “God Sufficeth”. At the end of singing, Ban began to laugh, and explained that often over the years Craig’s friends (usually tenors) got into difficulties singing when they asked Craig (a bass) to lead the singing. They had the opposite problem with me leading! Good thing I’m alto and not soprano!

I left the funeral home feeling so much more peaceful and happy than I had in the morning. Our friend Melodie Yates spent the night with me (the kids all moved over to be together at Dave’s home). She assured me that I didn’t need to automatically wake to check on Craig but to delegate “caregiving” duties to her. I was able to sleep 7 straight hours…what a blessing.

Love,

Susanne

The Final Stretch – June 30-July 1, 2009

Since it’s now July 5th, I’m looking back and the details are already blending and fading, but I want to share some about the final hours of Craig’s life here on this plane of existence.

We had occasional times of men visiting Craig and being with him for periods of time during the day or evening, including Craig’s son Dave. However, at night it was women accompanying Craig. We referred to ourselves as midwives (Michelle, Leah, Holly, and I) and it felt very much as if we were creating Craig’s room as a warm, loving, caring space for him. We stroked his head, massaged his feet, held his hand, put cold cloths on his forehead, adjusted his covers and pillows, and saw to his comfort as much as possible.

As you know, we stopped giving Craig morphine on Monday evening. He stayed essentially pain free in his head from then on. However, on Tuesday evening various issues began to arise. He seemed to be having more active seizures/tremors happening that caused him to be reaching for his face and head and potentially hurting himself. His legs and hips were more restless. We had Tammy, one of the on-call hospice nurses come to the house to help us assess how to ensure Craig was safe and as comfortable as possible for the night.

Tammy helped us pad all around Craig with towels, sheets, and blankets. We put a thick comforter on the floor in case he had a seizure bad enough to fall out of bed. We put a sock on his hand to protect him from scratching his eyes. She gave us normal saline to gently put in his eyes, as dehydration had left them dry. She gave us swabs for his lips and mouth to soak in his favorite liquid (Mandarin Orange Spice tea). We then met as a team to discuss how to handle the nighttime issues that could arise, how to recognize signs of death, and what to do when he passed. We then felt more confident and empowered by having specific tasks to do.

As Tammy was finishing up, we received a telephone call from Debbie Boyd-Tressler, who had been intuitively communicating with Craig. As you know, we had backed way off from interacting with Craig the previous night – little touch, very quiet, and so on, even though his eyes were often open. We were concerned about interfering with his process of letting go of this world. Debbie shared with us that there was nothing we could do that would interfere with his process, that he was filled with joy, and that whatever would make us happy was great for him. So, we touched him, played music, sang, prayed, and interacted with him all night! What a joy!

Once Craig had fluid in his eyes, he stopped reaching for them. We figured out that his hand was reaching for his head because his hair hadn’t been washed since Sunday morning and his head was itchy, so Michelle used the no-rinse shampoo and got his head clean and “scratched”. He then calmed down and quit reaching for his head. His auto-adjusting air mattress had been deflated since the power outage, and sciatic pain was reoccurring (he hadn’t wanted the mattress turned back on). Once we got it restarted and pain ointments rubbed into his back and hip, the leg and hip restlessness stopped. The major seizures we expected at the end did not happen, and all our ministrations calmed his whole body down. It was an amazing experience in effectively reading and responding to his body language!

I had a long stretch of hours with Craig by myself. As his breathing began to change around 4 a.m., I woke up Holly and then the girls and we spent a couple of hours with him praying and playing music. We put on the CD of Craig’s music and sang along with it. Kim Klein, our primary hospice nurse came in before her shift at around 5:30 a.m. and checked him. She had to leave at 7:30 a.m. for a staff meeting and told us that it would still likely be a few hours. So, the girls and I went to bed for a bit and left Holly at his bedside.

Around 8:30/8:40 a.m. Craig’s sister called and woke me, so I checked on him and was assured he still was “stable” and not yet exhibiting the end-of-life signs and so went back to bed. Within minutes, I was called to immediately come to Craig’s room. Instead of a gradual stopping of breathing, his heart and breathing seemed to simply stop, and we noted his passing around 9 a.m. We also noted how appropriate it was that he died on July 1st, Canada’s independence day, since I was born and raised there! We then spent about 30 minutes praying and saying our goodbyes. We called the funeral home and Kim to come. Craig’s son Dave headed over to the house to have his time to say goodbye. He had been in to visit each day but left the night shifts to us. He arrived expressing how happy he was that his Dad was now free.

Love,

Susanne

Craig Has Passed - July 1, 2009

This is Leah, Craig's youngest daughter, writing on behalf of Susanne. As of 9am this morning, July 1, 2009 Craig's soul was finally free from his body. He was not in pain and the whole experience was very peaceful and of course musical and prayerful by those of us at his side (Susanne, Michelle, Holly Timberlake, and me). Susanne will be writing a more thorough depiction of the experience when time permits. I am writing to pass on the funeral details.

Dear Friends:

The following are the arrangements for the honoring (funeral) service for Craig Farnsworth:

Date: Thursday, July 2, 2009

Visiting times with family:

Before service: 5:30 – 7:00 pm

After service: 8:30 – 9:30 pm

Time Service Begins: 7:00 PM

Place/Address:

Slovenian Society Home

20713 Recher Avenue

Euclid, OH 44119

Directions:

I-90 to E. 200th Street, going north. Turn east (right) off E. 200th St. immediately after Discount Drug Mart onto Lindbergh/Recher. The street dead-ends at the parking lot for the Home. There is not a clear sign for the building until you enter the parking lot.

Special Notes:

Chairs will be set aside at the front for family and readers. Light refreshments and visiting with family will follow. Please contact Janet Lyon at (216) 691-9540 if you would be able to arrive early (4:00 pm) to help with set-up.

You can visit the funeral home’s website at www.dejohnfuneral.com after 7:00 pm tonight for further information, to leave a message, etc.

Graveside prayer and burial and will occur the following day July 3, 2009 at:

Lakeview Cemetery

12316 Euclid Avenue

Cleveland, OH 44106-4393

Please gather at the Euclid Gate at 10:00 am for procession to burial location. (Cemetery plot is at the corner of Foothill Road and Ravine Road - Section 42) (Maps available at the funeral)

Donations are preferable vs. flowers and can be made to:

Baha’is (only) may donate in honor of Craig Farnsworth to:

Baha’i National Fund

Baha’i National Treasurers Office

1233 Central Street

Evanston, IL 60201

www.bahai.us

All may donate in honor of Craig Farnsworth to his and Susanne’s cancer support center

The Gathering Place

23300 Commerce Park

Beachwood, OH 44122

Online donations: www.touchedbycancer.org

Donations can also be made for research through the:

National Brain Tumor Society

East Coast Office

124 Watertown Street, Suite 2D

Watertown, MA 02472

www.braintumor.org/fdonate/

If you would like to send flowers, the funeral home would prefer that flowers be delivered to the funeral site – the Slovenian Home -- rather than to the funeral home. Ask the florist to deliver after 10:00 am on Thursday July 2nd only. Do not send flowers on Friday.

Slovenian Society Home

20713 Recher Avenue

Euclid, OH 44119

Update on Craig – June 30, 2009

We had no power for about 3 hours this morning after a severe thunderstorm, and no Internet for another 3 hours or so after that, so I’m just now able to be in communication. Gratefully, our next-door neighbor Frank Rodgers is a whiz on sorting out technical issues and helped to get our wireless network back up and running.

This morning was a repeat of yesterday morning – at 4 a.m. the end-of-life symptoms kicked in and we thought that was it. However, although his blood pressure is running approx. 60/40, his heart rate is staying up around 130 beats/minute to compensate. Until his heart rate drops, he is sustaining life. Craig’s eyes are still staying open continuously, fever of 102, and mild seizure activity. He is still doing some communicating with us with his eyes and eyebrows. We stopped the morphine last evening when Craig began to seriously resist the doses. He does not appear to be in pain any more, and we have not needed to resume them.

Leah, Michelle, Holly, and I did the nighttime and morning shifts and managed to get some sleep each. Last night we left Craig in fairly peaceful state, doing little to disturb him. Today we have done some praying and singing at his bedside, alternating with peaceful periods.

We are reflecting on the way this process is similar to baby birthing – predicting timing, pain, and moments of uncertainty are all parallels.

We have also been learning from our hospice team and each other about how to interact respectfully with Craig, telling him before we touch him what we are going to do and asking for his “yes” or “no” via eyebrow movement if there are choices. When someone comes to visit who has not seen Craig one-on-one, or when it’s clear that I need one-on-one time with Craig, there is a natural flow out of the room to give the space and time needed.

I’m noticing that at times I’m trying to say reassuring things to Craig, like it’s okay to close his eyes and assuring him that he’ll be fine and the angels are with him. Then I pause and realize that he is far more in tune with these things than I am!

Love,

Susanne p.s. Someone commented that it must be difficult to do these postings at this time. Actually as a writer, it is helping me to process and accept the experience, and we are so grateful that it has helped us create a community that is praying for us and supporting us. Craig and I are also deeply committed to contributing to others, and we feel that this communication is fulfilling that commitment.

Update on Craig – June 29, 2009

From about 4 a.m. on all day we expected Craig to pass. Nancy (sister) spent the night with me and all day here. His blood pressure was very low and all signs were that he was close. His children all arrived by the afternoon, and it seemed as if he held on for them. However, he is still with us. He is dying with his “eyes wide open” though – very conscious and aware all day (See blog from April 22). He communicated with us with his eyebrows, eyes, and body movements quite well. Our hospice nurse, Kim, was with us most of the day. Our music and art therapists came and spent time with us, with Ginny singing, and Barbara helping us understand the process. Craig began to refuse the morphine during this evening, but he does not seem to be in pain. There have been continuous apparent “mild” seizures happening. We are now doing shifts with daughters Leah and Michelle and Holly and I. Nik just left. So, we are quiet and peaceful and still expecting Craig to pass tonight. There’s probably more to say, but that’s all I can manage at the moment.

Love,

Susanne

Snoring the Day Away – Maybe! – June 28, 2009

Holly and I more or less managed the shifts last night. Craig got agitated at 4:30 a.m. or so at the end of my “on-duty” time. We noticed times when he would stop breathing briefly and that it didn’t seem as if the morphine was keeping up with the pain. Of course, we also began wondering whether it was “the end”! (It wasn’t.) The hospice nurse visited and helped us work out an increased dosage with the doctor. That has then kept Craig comfortable today…although it means often hourly medication. We then continued to do shifts until mid-day.

A friend brought food in today, so for those who are concerned about my well-being, I’m eating well, I promise! Deb Boyd-Tressler (Niks’ wife) came for a while this afternoon so I could nap, and she spent time intuitively communing with Craig. She helped me learn his body language for when he is awake and when he is asleep, even though he is “snoring” away. It’s funny that he hasn’t snored throughout our marriage (a blessing!) and now here he is doing it at the end! It’s actually simply congested breathing. Deb said that Craig is so busy visioning internally that he does not open his eyes, even when he is awake. He was able to let Deb know that the morphine is helping him, and we should continue it.

My challenge this morning was coming up with enough help to be able to have someone awake with Craig on a 24-hour basis. The solution at the moment is that my sister-in-law is coming in from Pennsylvania for the night tonight. Her husband may come in after that if we need help. Tomorrow the nurse will reassess Craig to see if having continuous hospice care is appropriate – that assessment will now happen on a daily basis as well.

The day has been gorgeous – sun and breeze through the house all day. We are playing the Long Healing Prayer for Craig periodically (www.projectmelody.com) and other music and in between enjoying the quiet and holding his hand.

We appreciate all the loving and encouraging comments on the blog and on Facebook, and we know that there are many others out there silently praying for us. We feel well accompanied!

Love, Susanne

Pain Starts and Friends Help – June 27, 2009

Nik Tressler and I spent the night with Craig. He was peaceful, but kept twisting and turning in the bed until he looked like a pretzel. But, we kept putting pillows around him, and as long as he seemed comfortable, we left him be. The hospice nursing assistant straightened him out while bathing him, but he seems to still want to curl back up. During the day today, it has been clear that he was beginning to experience pain in his head. We are dependent upon body language, but grabbing his head and rubbing his forehead seem like clear signals! The hospice nurse visited and confirmed that we should begin morphine for him. We started with a low dose spread out at a four-hour interval, but we are now on a higher dose and at every two hours. He’s running a fever of a bit over 100 F. The congestion is very entrenched in his chest. We have seen Craig’s eyes briefly a couple of times, and he does seem to understand us when we talk to him.

A couple from our support groups – Cheryl and Les – stopped by this afternoon. Holly Timberlake joined us later on this afternoon. She and Nik did spiritual visualizations for Craig. She has also recorded one for me that you can listen to on her website, www.todaystapping.com. See the menu on the right side for Susanne’s Journey below the link for Craig’s Birthing Meditation. Holly and Nik sent me upstairs to rest and listen to it while they helped Craig. Very helpful! Nik has just now gone on home, and Holly and I will do the night shift. We’ll have to set the timer for every two hours for the medication, and we are planning to do alternating three-hour shifts of sleeping and waking to keep him monitored.

Love,

Susanne

Different Today – June 26, 2009

After a full, alert day yesterday, Craig went soundly asleep at about 10:30 p.m. last night and slept all night. However, this morning when we tried to wake him, it was clear that it wasn’t really possible to arouse him. He is not in a coma and still responds with facial expressions and noises to the unfortunately necessary things we are doing to him (enema, catheter, bathing, etc.). But, he does not open his eyes and isn’t generally interacting with us beyond a random “okay” once in awhile when we tell him something.

Full-time hospice care ended today after it was clear that Craig was somewhat stable. We still have 24-hour access to the on-call nurses, and he will receive visits all weekend, but friends and I will be monitoring him for challenges. His chest congestion keeps coming and going, as his heart is now apparently too weak to effectively remove fluids from the lungs. Right now, he is in minimal pain as far as we can determine by body language. If that changes, he’ll be assessed and probably medicated. Otherwise, he is now on no medications, food, or liquids.

Barbara T-Q, our art therapist, came by this afternoon and glued the last poem he did in his art journal. We had hoped he’d be able to paint today, but that activity now seems to be done. I’ve played music and prayers set to music for him off and on all day…the same pattern we had in previous days. It’s a beautiful and quiet day, temperature in the 70’s, with the windows open to a light breeze. I now have a desk set up outside of Craig’s room with the same view into the trees that he has from his room. It’s been harder to focus today on doing anything though…too restless to settle down for much of anything for very long.

Thank you all for your prayers for God’s will and Craig’s peaceful transition (and that we have the strength to effectively handle any last minute adventures!).

Much love,

Susanne

p.s. We also appreciate your prayers for daughter Jennifer as she approaches the birthing transition with our granddaughter on July 16th.

Craig Amazes Us Today – June 25, 2009

Hospice and I are somewhat in crisis responder mode – suddenly stopping steroids and anti-seizure meds without tapering is not the usual pattern. So, all night and day we have been wondering what consequences were going to emerge. Instead, Craig was awake and alert practically all day from fairly early in the morning. Lately he has been sleeping most of each day, so this was a big change. His speech was clearer and he actually came out with phrases and sentences instead of just an occasional word. The congestion in his lungs improved, and the coughing significantly decreased. His kidneys were functioning better. His appetite was good, too. So, quite baffling, but very nice!

Craig is now on a soft diet that can be easily swallowed, so I made applesauce this afternoon, one of his favorites. For the first time in a couple of decades – at least – I also made some pudding so he would have a non-dairy version (less congestion). So, we are experimenting with what he can eat and what tastes good to him.

Tonight Craig tried to communicate some more complex matters, much to our mutual frustration. I understood from him that the angels are still doing their “pre-visit” and “preparing” him. They helped him feel better today. And they want us to do three things. Unfortunately, that’s where the communication broke down and all I got was “Let us begin”! The angels are apparently still the same crew, however at some point recently Craig also saw ‘Abdu’l-Bahá (son of Bahá’u’lláh, the founder of the Bahá’í Faith).

So, we have had brief visitors, read, listened to music, interacted with the hospice nurses, reaffirmed with Craig that he wants to continue to stay off the drugs, and wandered through the day. I got out to the grocery and post office and had a nap in the middle as well. It was 90 degrees, so we were shut in the air conditioning all day and then we turned the computers off for a couple of hours while thunderstorms came through. The night nurse is now on duty, and the plan is for me to sleep upstairs again and leave her to help Craig. I got up once last night as needed, but otherwise slept well.

Each morning, our lead nurse visits and we will re-evaluate our need to have someone here continuously. It is too soon to stop it yet. One day at a time…

FYI, some have expressed interest in the quotation I recently posted about Bahiyyih Khanum. Here is a link to the whole article about this amazing woman.

www.claricomm.com/Bahiyyih_Khanum_Tribute.pdf

Love,

Susanne

Medications Stop; 24-hour Care Begins; June 24, 2009

For the last while, Craig’s medications to keep treating one symptom or another kept increasing, instead of decreasing. When the proposal came to us this afternoon to add one more that would keep his lungs and heart functioning, we entered into a consultation with our hospice nurse. Craig is on a high enough dosage of steroids at this point to be very clear in his understanding and clear in his brief responses. He has emphatically indicated that he wants all primary medications stopped.

We were also at the point today where he could no longer safely swallow pills and we would need to crush them and put them in applesauce, pudding…

Hospice licensed practical nurses will now monitor Craig on a 24-hour continuous care basis here at the house to watch for and help us deal with seizures, brain swelling, pain, and so on. We have plans in place to respond as appropriate and needed. He is okay with us administering medicine for pain and to calm his coughing – comfort management only.

He spent the last 2 hours listening to spiritual music and is now peacefully resting. Because he’s already had his full dose of steroids today and his morning anti-seizure medications, it is likely that it will still take some time for both reactions to the absence of medicines to set in and his body to actually start to shut down.

The hospice spiritual care person was here this afternoon and gave me a Reiki treatment after the decision was made…that was helpful. I’m doing my best to stay calm and centered and know that all of your prayers are what is helping hugely.

Much love,

Susanne

The Time of Waiting – June 23, 2009

Sunday was Father’s Day, and Craig was delighted to hear from all his children and his eldest niece. He felt a bit more energetic, sitting up on the side of the bed for two meals. The night then was difficult, with lots of congestion, coughing, and breathing difficulties. This meant little sleep for both of us. Yesterday he was very quiet, sleepy, and minimally responsive. We raised the steroid level yet again, hoping to keep ahead of the tumor growth and swelling.

Hospice and the oncologist evaluated his situation with us yesterday. The vital signs are still about the same, but his lungs are definitely in worse shape. We started a new drug last night to clear out some of the phlegm, so he slept better. Our friend Holly Timberlake also spent the night and took the lead caregiver role, so I slept upstairs in my bed with the door closed and got caught up on sleep a bit. Blessing!

We had study circle here yesterday evening, although Craig wasn’t up to having some of it in his room. The participants still visited him and perked up his spirits though. Our friend Nik also came in during the evening, so he, Holly, and I surrounded Craig’s bed with prayer and love.

I’ve thought a lot lately about the passage below written by Marjorie Morten about Bahíyyih Khánum (daughter of Bahá’u’lláh) and its applicability to and lessons for Craig and I at this time:

“The word mazlúm, which signifies acceptance without complaint, has come to be associated with her name. She was never known to complain or lament. It was not that she made the best of things, but that she found in everything, even in calamity itself, the germs of enduring wisdom. She did not resist the shocks and upheavals of life and she did not run counter to obstacles. She was never impatient. She was as incapable of impatience as she was of revolt. But this was not so much long sufferance as it was quiet awareness of the forces that operate in the hours of waiting and inactivity.

“Always she moved with the larger rhythm, the wider sweep, toward the ultimate goal. Surely, confidently, she followed the circle of her orbit round the Sun of her existence, in that complete acquiescence, that perfect accord, which underlies faith itself.

“So she was in life. And when she came to die her failing faculties threw into sharper and more intense relief the nature of her heart and spirit. It was as if she first let slip away the mechanical devices of the mind and the transient sense perceptions while holding fast to the end the essential elements of her being, unclouded by extremity of bodily weakness and pain. Still her smile spoke strength, serenity, tenderness and the love that is both recognition and bestowal.” (The Bahá’í World, 1932-1934, Page 181-185)

Love,

Susanne

Craig’s Physical World Narrows – June 20, 2009

Craig has spent almost a week now exclusively in bed and in his room. Each day we have asked if he wants to get up, but we will now probably stop asking. His wheelchair is now folded up in a corner, and the parts of our home that were moved to accommodate it are moving gradually back into place. The TV is now outside his doorway so we can watch a movie with him in the bed. It’s a weird transition—not wanting to assume he’ll never get up again, and yet seeing that he just doesn’t have the energy to do so either. The nurse and I yesterday moved his bed so he has a better view out the window and all of us have better access to care for him from both sides of the bed (it was against the wall). I’m beginning to give the caregiver some days off, because there just is not enough to do.

Craig’s vital signs are constantly changing. Heart rate, blood pressure, and temperature are all ranging above and below normal daily. His lungs are more congested, so I’m doing breathing treatments more often and occasionally cough syrup when the coughing is making sleep impossible. He’s generally eating two small meals daily. It’s clear that Craig just wants to sleep and wander in spiritual space, so having physical interventions (bathing, breathing treatments, pills, etc. etc.) are a test. I often simply sit at his bedside and hold his hand…or simply let him sleep (and keep checking whether he’s breathing!).

Craig’s mother and sister drove over from Pennsylvania yesterday for a lovely visit. They had not been able to be here since Easter/late April, so it was good to see them. Betsy, Craig’s support group leader at The Gathering Place, also came for a visit with him yesterday. Music and Art therapies were both canceled this week, but he’s still open to them happening next week…we’ll see.

It’s becoming harder for me to leave Craig for any length of time. I’m wondering too much what is happening in my absence, and he seems to need me close by. I am still taking occasional breaks though – got to the grocery (he’s enjoying the cornmeal mush again), dentist (no cavities), and massage therapist (lovely) this week.

Love,

Susanne

Fever and Coughing – June 16, 2009

The rest of the day yesterday was difficult in many ways. When the hospice nursing assistant and I tried to get Craig out of bed with the lift, he slid out onto the floor (gently). So, we needed the local helpful firemen again to get him into bed. He then chose to spend the remainder of the day in bed.

In the early evening, he began coughing, and breathing treatments, cough drops, Vicks Vaporub, etc. etc. didn’t stop it all night. Finally by the third breathing treatment around 5 a.m., the coughing stopped and we got some sleep. The hospice nurse came and checked him during the night and discovered that he is now running a fever. She ordered cough medicine for him in case we need it from now on, too.

Craig has run a fever all day, although Tylenol is keeping it down somewhat. He ate a piece of toast and some blackberries is all. While it’s possible he has an infection, it is more likely that the tumor is now affecting his ability to maintain a normal temperature. Bonnie Schaefer, a friend from my support group bought and brought me a new humidifier for Craig’s room, since that is helping his breathing. Our old one was way too loud! I caught a 2-hour nap in the afternoon while Craig slept. He has again spent the day in bed.

Our friend Bob Horn stopped by this afternoon and was able to get Craig to laugh a little with his stories. He asked Craig if he is “bored”, to which Craig quite clearly responded that he wasn’t. The spiritual part of this adventure is keeping him interested! John Cunningham is coming this evening along with the caregiver so I can go to my support group. Last week Craig got so sad about me leaving, that I thought having a friend here might help.

Hospice at this point is saying that Craig has fairly extensive healthy physical reserves, so it is taking time for his body to actually shut down. It will likely (not guaranteed!) be a gradual process. Craig and I together with the nurse decided to keep him on the higher dose of steroids, because the swelling in his head and neck is becoming more uncomfortable.

Love,

Susanne

Heavenly Stairs vs. Physical Ones! – June 15, 2009

So, if you picture the stairs that we run up and down all the time, Craig would have easily made it to the top of the staircase sometime this weekend. This morning when I commented that the climbing seemed to be going very slowly, he agreed! So, the only conclusion I can reach is that the heavenly variety works a lot differently than the earthly kind! He says he is still being accompanied up the stairs by the same people though. The emotional push and pull for everyone of this process of preparing for him to die and then him continuing to live is exhausting.

He spent the weekend wandering between here and “there”. Friends flowed in and out visiting, saying prayers, and singing for him. He shed tears often in the process. He spent some time up in his wheelchair. Yesterday we sat on the back porch for an hour or so holding hands and listening to prayers set to music. I shed a few tears then as well.

I realized that I needed to have friends come almost more than Craig did. Sometimes the alone time is a blessing. However, sometimes it’s very hard to be here alone doing everything. It was good to have Holly here with me on Saturday evening/night/morning, and up with us during the night helping. I’m struggling a bit more with taking care of myself right now. Patterns of sleeping, eating, exercising, etc. are all more random. Usually I can get back to sleep after being up with Craig, but at times, it’s difficult once I’m wide awake.

Craig is now very shaky and losing his balance, even sitting on the edge of the bed. So he now requires support and assistance with virtually everything – eating, using the urinal, getting positioned in the bed. I gave the caregiver (and us) the weekend off, but he’ll be back today to help. There’s a pile of bedding to launder and dirty dishes to handle, so good to have help back.

One of the interesting challenges now is that in trying to reduce Craig’s head pressure discomfort from the growth of the tumor, we have increased the steroid levels. The side effects of this drug include increased appetite, thirst, and urination. So, at a time when all of these had begun to significantly decrease, they are back increasing again. This drug is not intended to extend Craig’s life, only increase his comfort, so we are questioning whether that is really true. We meet with our nurse later today and will discuss this together.

Love,

Susanne

Quick Update – June 13, 2009

Craig is still physically with us and spent the afternoon out of bed. After I read him his email messages, many of which moved him to tears, he simply wanted to sit quietly in his wheelchair. At one point, he didn’t want me to touch him or move him and said he was “there”. He seems to be wandering between this world and the next one, zoning in and out and confirmed that he’s still walking up the stairs.

Our friend Nik joined us for a while so I could sleep (last night was a constant series of waking up to help him and finally a breathing treatment from hospice about 6 a.m.). When I got back up, I was able to help Craig express that he’d like Nik to sing to him, which he did, and prayed with him, too. So, peaceful time… Our friend Holly is coming in for the evening and to spend the night, so I’ll have company and help.

Susanne

Stairway to Heaven, June 12, 2009

As Craig is spending more time in bed, he often sits on the edge of the bed with a wooden TV tray in front of him with his meal. Tonight I pulled in a chair and my own tray and we ate together – baked chicken, dressing, carrots, and potatoes. After dinner we drank tea and ate cookies and talked.

Talking these days is mostly Craig saying single words so I have some idea of what he is thinking about. Then I ask questions that he can answer with “yes” or “no” so I figure out what is on his mind. We got talking about the angels. He motioned with his hand that they were higher than him and on his left side. Pleasant is no longer with him (I asked if he had to go back to work, and Craig said “yes”!). His Dad, Kevin, Janet, Becky, Debbie, Pearl, and now Jet Andrews were there tonight.

I asked if he is seeing the angels in the daytime now or still only at night. He is seeing them at both times, but not all of the time. I asked if he sees them only in his bedroom (“no”) or if he now sees them elsewhere in the house and out in the driveway, where he likes to sit in the sun. He said “yes”. I asked if he had seen anyone famous like Christopher Columbus, and he said “no”. I asked if he had seen ‘Abdu’l-Bahá or his heroes Mulla Husayn or Quddus, and he said “Oh!” “No!” and looked very surprised. I commented that maybe that was why he hadn’t left yet, that he was waiting for them. He said “maybe”. The only people he has recognized with him are friends from the greater Cleveland area who have passed on and his father.

I curled up in the bed next to him for a while. At one point, I was laying watching him and he suddenly stared straight ahead and said “Oh! Stairs!” Through questioning I was able to determine that he was seeing a set of stairs floating in the air, that the angels were wanting him to climb the stairs, that the climbing once he began was “easy”, that he was not afraid, and that the arrival “plaza” that he painted in last Saturday’s painting was at the top of the stairs. He said a couple of times that “they are there in spirit”. I asked if they wanted him there in spirit, too. He responded “yes”. He then had a brief time of confusion where he didn’t understand quite where he was and what I was asking him related to the stairs. He said “this may be the last time I see you”. I asked if he wanted me to call and gather the few people he had said could be at his bedside while he was passing, but he didn’t want that. He just wanted quiet.

We played a lot of music all evening. During the time of the stairs, the song that was playing was a Bahá’í quotation, “O MAN OF TWO VISIONS! Close one eye and open the other. Close one to the world and all that is therein, and open the other to the hallowed beauty of the Beloved. (Bahá’u’lláh, The Persian Hidden Words, #12) Amazing!

There is a prayer Craig has been asking for since Saturday, but we have been totally unable to figure out which one he wants. We decided tonight that the angels could probably help him find it, and he smiled in relief and said “yes”.

We did our normal bedtime routine of changing his clothes and getting him in bed. I now have to use the lift to place him in the bed high enough so that his lungs don’t fill with phlegm. We lay together and listed the “roses” of the day. I cleaned up the kitchen from dinner and then went back in to sing the Healing Prayer with him, which I’d forgotten to do. I said a second prayer as well and kissed him goodnight.

It will be a late night – Medical Services is delivering breathing treatment equipment and medicine to him around midnight in case we need it. The sublime and the practical together...

Love,

Susanne

Music, Paintings, and Poetry, June 11, 2009

Much to Craig’s delight, he now has his guitar back that he loaned a friend. It has been his faithful companion since at least college days. The music therapist filled him with joy when she played “his” songs on it for him this week. www.claricomm.com/CraigGuitar.jpg

We’ve been talking about our current hospice painting and poetry but haven’t really shared it, so I’m doing this posting to attempt to do a little of that. On June 6th, Craig painted an abstract depiction of his journey toward the next world. www.claricomm.com/LivingUp.jpg In response to questions from his daughter Michelle and I, Craig shared these words about it:

Living Up

Narrowing passageway

I’m going along it

Traveling on a river

There’s a plaza, an arrival place, a compass [far right of painting]

Traveling here, arriving there

People with me throughout history

Very nice at end, less people

More help at beginning, less at end

I’m in the middle, I want to be at the end

There are things to walk over first [orange lines]

- Craig Farnsworth, June 6, 2009

Today in art therapy, he painted in his art journal a painting he entitled “Soul Completion”. www.claricomm.com/SoulCompletion.jpg The circle represents Craig, and inside are the angels and Craig together, singing, praying, and communing. Today for the first time Craig did his painting in bed instead of up at the table. www.claricomm.com/ArtinBed.jpg

On June 5, I painted “Intimately Touching The Dying Process” www.claricomm.com/IntimateDying.jpg. I then shared these words:

(Context: If it’s so hard, why aren’t you putting Craig in a nursing home?)

So when I began today, I used the flesh tone for the gift of touch,

and then drew with the fingers of touch

In the center part of the gift of having Craig here with me at this time

Is that we can hold hands

I can lay with him,

Put my ear on his chest and hear his heart beat.

And I’m intimately touching his most basic physical needs

As well as his need for emotional and spiritual touch.

We’ve been intimately touching on the gift of our marriage

And I’m intimately involved in helping him speak

And companioning him as he struggles with living and dying

It feels like a privilege at this time to

Help him with his journey

And to powerfully choose with him

How to beautifully die.

- Susanne Alexander, June 5, 2009

This evening we watched a movie that we both enjoyed, and then we listened to Bahá’í prayers set to music for about an hour. Last night was difficult as Craig’s lungs filled up with phlegm and it was a struggle to get him positioned in the bed for greater comfort. It was scary listening to him have difficulty breathing. I didn’t call hospice fast enough for help with him…I’m still learning about doing that! I’m hoping he won’t be coughing as much tonight and we both sleep better.

Love,

Susanne

The Race and Physical Shifts, June 10, 2009

On Sunday (June 7), Craig requested that his daughter Michelle and I represent him on the Craig and Stephanie team for the annual Race for the Place fundraiser for The Gathering Place (our cancer support center). Our friend Stephanie died of pancreatic cancer about 18 months ago. We had about 28 on the team and raised about $1200. It was a bit sad doing it without Craig, that’s for sure, but good to do it nevertheless.

Here are the photos: www.claricomm.com/RaceforthePlace2009.pdf

Our uneventful period ended over the last couple of days, as Craig and I are dealing with things coming out of both ends of his body again. Thankfully, the hospice nursing assistants and our caregiver helped with the cleanup process!

Kim Klein, the hospice nurse, and I assessed Craig today. We have been lowering the steroid level for the last 10 days. However, it’s clear that brain swelling is now uncomfortable for him. He is experiencing pressure around his forehead and temples. There’s also swelling in front of his ears and at the base of the neck. So, the dosage will now ramp back up somewhat.

There continues to be some lung congestion and capacity reduction as well, but he is still sleeping well and the coughing is not generally keeping either of us awake. He’s still sleeping a lot and eating only small amounts, but still recognizing visitors and clearly understanding most of what is said to him.

Love,

Susanne

The Sacredness of Accompanying Craig – June 6, 2009

Each day brings new opportunities for attuning to what Craig is feeling and trying to communicate. He is grieving leaving this world. In particular, this week he has been sad about the relative shortness of our marriage (almost 10 years). And at the same time, he’s sad that the dying process is taking so long!

I reminded Craig yesterday and today about our Bahá’í wedding vow, “We will all, verily, abide by the Will of God.” In fact, we sang it together today (as we did at our wedding) so I would be clear that he heard it. I have asked him to “go with the flow” and not try to agitate for or force his ending here to go at any other pace but what God wills.

My Dad sent me an email this week that included the phrase “in intimate touch with the dying process”. That became the subject of my artwork yesterday with the hospice art therapist. I feel so privileged to be accompanying Craig in this process. The love in his room is palpable. Craig’s artwork yesterday was all about locks and keys. We think he’s searching for a way to unlock the door to the Kingdom of Heaven.

Today Craig has been accompanied by his daughter Michelle, who just arrived for the weekend. For the first time in their lives, they painted together this afternoon. Of Craig’s two paintings, one he described as including many angels gathered together singing. The other was of traveling from a wide place through a narrowing passageway and out to an open “plaza” at the other end. He said he was in the middle, but wants to be at the end.

We got an email yesterday from our dear friend Holly. She said, “every breath is an opportunity for awareness of breathing in the Holy...” So we breathe in and out each day and experience the sacred. She stopped by this evening and brought us dinner, so we breathed together!

The hospice nurse yesterday said Craig has lost more lung capacity since Wednesday, but his heart rate was back to normal. The steroid levels continue to drop. All else seems stable at the moment.

Love,

Susanne

Craig’s Body is Slowing Down – June 3, 2009

This week Craig is spending a lot more time in bed. He’s still getting up for brief periods, but he’s lower in energy. He goes in and out of sleep, and I and various visitors wander in and out. Sometimes I play music. His appetite and body functions are slowing down. He has decided that it’s time to lower the steroids he was taking, so we are gradually ramping them down each day. However, he will likely stay on a maintenance dose to help prevent seizures. He can only communicate in a limited way, but he is still understanding what is said to him.

The angels (many of whom he recognizes) are singing to him some nights, and he’s very happy to hear them. As with most things in Craig’s lifetime, he is struggling with the patience to wait for God’s time to catch up with his! But, we know it will soon.

I’m now sleeping on a fold-out couch in the family room, which is close by his bedroom in case he needs me during the night. I went to the support group by myself last night – very sad to do. His group members and mine both missed him very much.

Our friend Holly Timberlake has created a podcast for Craig to help him with the process of being born into the next world. If you wish to listen to it, the link on her website is http://www.todaystapping.com/craigs-birthing-meditation/. (Free Real Player or Quick Time software seem to be best for playing it)

The hospice nurse just left. For the first time, there is beginning to be some diminished capacity/air flow in Craig’s lungs and some increase in his heart rate. They will monitor him closely over the next few days.

Love,

Susanne

Staying at Home – June 1, 2009

After the last postings, when it was clear that this part of our journey is physically difficult, especially on me, a few people asked why we didn’t go ahead and move Craig to a nursing home. Let me try to address that.

We consider and experience our home as sacred space. It is full of spiritual vibrations, prayer, and love. The view out the back windows is of a ravine full of trees. We can see the sunset down through the trees and catch glimpses of its reflection on Lake Erie in the distance. It’s very quiet, especially in the evening and at night. We can sit and pray together over a cup of tea. I can crawl into his bed with him for snuggling at bedtime. If he’s hungry for ice cream, his favorite flavors are in the freezer nearby. Friends and family can easily stop in or call. Craig’s painting supplies are easily accessible, and the CD player is handy for favorite music. I know when he needs to sing the short healing prayer. If I need to work or rest, my office is upstairs and the bed close by. I just needed some daily help, and I have that now.

The staff at the nursing home seemed caring and helpful. But, overall, I just couldn’t see it working for Craig. The nursing home reeked of urine. The residents and staff make the place full of activity and noise. Craig is losing enough mental abilities, that the new place would be confusing, and it would be difficult for him to rest or figure out new routines and even how to work the bed controls. We think that this time of challenges is actually very short. We are confident we can cope for a limited amount of time. Then I plan to sleep for a couple of weeks!

And…life has unexpected curves, so we’ll continually re-evaluate as needed!

Love,

Susanne

Is There Any Way to Do This Well? May 29, 2009

Our hospice art therapist gave us a timely reminder today that what we have been going through these last weeks is very much like the birth canal transition for babies. It’s often messy and full of pain, but the outcome is generally a happy one! Craig just wants calm, quiet space to wind down his life. But dealing with his physical needs just seems to keep requiring more people and more fuss. Wednesday night was a brief trip into hell. At the end of the evening, I wrote this to the hospice nurse:

“Okay, I give up. I can’t do any transfer any more. My neck’s out. My back’s out. And the Hoyer lift and I are having swearing pitched battles with one another. I tried tonight to get him from the bed to the bathroom…in a hurry because he thought he had to have a BM and didn’t want to have it in the bed. I had trouble getting him straight in the sling. I’m having trouble all the time pushing him in the lift, getting the legs of the lift to stay apart (they keep moving back together) and then getting him far enough into/straight into the chair when I’m doing it by myself. I’m not strong enough to lift him back into the chair. He had no strength in his legs and couldn’t help. I finally dropped him in as best as I could into the seat of the chair, but we were both so stressed that he had a mini-seizure. Then I got him to the toilet because he still had to go and we weren’t fast enough so he peed all over himself, his clothes, the floor, and me. And no BM. I had to keep holding the commode chair steady, because he’s so heavy and off center, that every time he moved, he almost tipped over. And then we held each other and cried. But then I couldn’t get him off the toilet, so the firemen had to come help get him off the toilet and back into bed [six of them in our little bathroom when we only needed two!].”

We then sat and listened to a spiritual music CD and ate pizza and waited for the on-call nurse. So, we calmed down and re-centered a bit. Someone came yesterday and did some re-training with me on the lift, so I actually did use it successfully at bedtime last night and tonight.

Yesterday was calmer (thank you God!). The hospice nursing assistant got Craig washed at 9 a.m. and he went back to sleep and got up about 1:15 p.m. We spent the afternoon and early evening with me reading our new “Empowered Healing” book to him all the way through and making edits. Then he was ready for bed around 9 p.m. Today we started another new routine. Craig sleeps in until a hospice nursing assistant comes at 11 to shave, bathe, and dress him. They then get him up for breakfast/lunch. We now have a new daily caregiving service, and they’ve sent us a very strong man who puts his arms all around Craig and lifts him from one place to another! So, that helped today. I got to the chiropractor and massage therapist and got the kinks out of my own body while they did that. And I got to miss the enema party with the hospice nurse at the same time! Yay! [Note: We evaluated whether to send Craig to a nursing home and decided to try the daily caregiver instead.]

I’ve been so accustomed to doing excellent caregiving for Craig that I’m frustrated at not being able to handle this period anywhere near as well as I would like to be. But, the team is rallying, and I’m trying my best, and we are muddling (“laboring”?!) through it all!

Love,

Susanne

Craig’s Paintings, Songs, and Poems – May 27, 2009

Over our fireplace mantle are now two framed displays, both including Craig’s paintings and poems from 1998. See photo, www.claricomm.com/CraigPaintingsPoems.jpg.

We previously shared the one poem that Ginny Kalley, our music therapist composed original music for. She has now completed the second one, “The Wind” (the painting on the right side; Here Comes the Sun is on the left). Here are the words:

The Wind

The wind is clear

The wind is clean

The wind is blowing, clearing the cobwebs.

The moon is bright

The moon is light

The moon is shining like as a beacon.

The stars are glistening

The stars are listening

The stars are leading the man to open.

Running, running, running

Singing, singing, singing

The wind, the moon, the stars.

The path has a freshness.

The dust has been removed.

The way has become clearer.

The wind is carrying a song

The moon is lighting the way

The stars are piercing the sky.

~ Craig A. Farnsworth, November 11, 1998

In the center of the photo is a mandala drawing done by Ernie Horvath of our cancer Spirituality Group. It depicts the Sunrise and Sunset of Craig’s life.

Love,

Susanne

Craig Learns to Fly, May 25, 2009

Okay, I’m starting to recover from caregiver meltdown last week. Our hospice nurse, Craig, and I have been in brainstorming mode trying to figure out how to not burn me out and wreck my body. And how to keep Craig home instead of down the road in a nursing home. As Craig is becoming harder and harder to transfer (As testimony, there’s an array of bruises on his posterior from landing on the arm of the wheelchair), we explored whether to confine him to bed. The decision was “not yet” – and we got him his own personal flying device – a Hoyer lift. See photos:

www.claricomm.com/CraigFlying.jpg

www.claricomm.com/Craig-Annie-and-Hoyer-Lift.jpg

Craig’s initial response the night the lift device showed up was complete resistance. I got very frank about an “attitude adjustment” – it was let the lift stay or he could consider either being bedridden or moving to a nursing home! Now he’s decided it’s fun…in spite of my challenges driving the thing and operating three separate controls on it! He also agreed to an increase in the steroid dose, which is helping him talk better and making bathroom transfers easier and safer.

Over the last few days, it became clear that I could no longer safely transfer Craig in and out of the shower either. Hospice is now providing a daily nursing assistant to bathe him in bed and get him dressed and up in the morning. That’s very helpful.

I was able to get to a massage therapist and chiropractor on Friday and then had a respite day on Saturday. Unfortunately, friend Nik Tressler then got stuck with our ongoing saga of Craig’s digestive system. He took Craig out for a nice breakfast. On their return home, diarrhea and vomiting both hit simultaneously – thankfully in the bathroom. They blessedly cleaned it up and didn’t call me, so I continued on with resting and relaxing and dealt with it from 4:30 to midnight instead. We are trying to determine whether one of the medicines is causing this…that’s our best guess at the moment. Craig’s getting very tired of rice, even though I’m varying his diet with rice cakes, cooked rice, baby rice cereal, rice milk, Rice Krispies, Rice Chex… It’s getting broken up with bananas and applesauce, too! So, we hope to resolve this very soon…

Craig is talking about it being “disorienting” that he is wandering between this world and the next one. He says it’s “weird” and it’s “easy to go, hard to stay.” We talked about the possible wisdom of this transition taking time, being gradual, and at times being difficult. He painted three pictures this afternoon about wanting to be with the angels and about the angels “singing beautiful, clean, and clear.” It was the first I knew that he had heard the angels sing.

We hosted our weekly study circle tonight and began it with a brief memorial service for relatives of the group who had passed away. Craig shared about two of his “angel guides”. We used a beautiful CD of music called “Fire and Gold” by Elika Mahony (www.elikamahony.com) – heavenly. We then began studying the section in our book about “Life and Death”, so Craig’s experiences kept coming up all evening.

Every day now is different. Routines are virtually non-existent. Two days lately, our morning couple prayers happened at 9 or 10 at night. I’m getting better at eating while Craig is sleeping and not waiting for him to wake up. I have to be vigilant to not miss doses of pills – both his and mine. There is a stream of people in and out of the house at a time when Craig just wants peace and quiet…but unfortunately, that would mean me doing everything, and that’s not possible. So, we cope one day at a time doing the best we can.

Love,

Susanne

Tough Day, May 20, 2009

Craig and I have agreed that I won’t get too graphic on the blog. Some days that’s a tough agreement to keep!

The diarrhea from 10 days ago turned into constipation and the treatments for that turned back into diarrhea in bed about 4:30 this morning. While trying to get up, Craig ended up on the floor, and we needed the firemen to help get him up and help me with him. Then the cleanup. Then the hospice nurse. Then more cleanup. Done about 9 a.m. Tried to sleep, but the neighbor needed to edge his lawn for an hour, so a nap later worked instead. Upon Craig waking up, we discovered that adult diapers are more made for old women with small bladders, not Craig. So, the bed got changed twice today.

It’s times like these that it’s harder to take my own advice and say “O God!” instead of “O s—t!”! We got through it all with perseverance, tears, prayer, and gratitude. I said to Craig at one point that at least it wasn’t as bad as the prison in Akka! Baha’u’llah, His family, and many early Baha’is in the 1870’s (I’m bad at history, so the date’s approximate…) were banished to there in northern Palestine(now Israel) for being too spiritually popular in Iran, Iraq, and Turkey. There was no water to drink or wash in, no food, high heat, foul air, cramped in small rooms, illness, and more. At least we have hot, running water, supplies from hospice, firemen and nurses to call for help, rubber gloves, diapers, and washing machines!

The rest of the last few days have been fairly quiet. A highlight was Thursday night’s cancer-spirituality group where we talked about labyrinths, a meditation/prayer tool that helps people center themselves with God. On Sunday, we went to one at Ursuline College, about 20 minutes from our home. I pushed Craig in his wheelchair around the path, and we made it to the center for some prayer. Here is a link to a photo so you can better see what I’m talking about.

The angels have been back visiting Craig a couple of nights in this past week. Mostly the same people, but Bill Fountaine was new. It’s amazing how many people we know who have passed on to the next world! Quite a crowd to greet Craig!

Craig is sleeping more these days. He’s had a couple of days where he has slept until after noon. I get lots of writing done, but it’s strange to keep adjusting to when to do meals and other activities. His legs are getting weaker – I’m often now pushing his wheelchair around the house instead of him using his legs to get around. And he has an infected spot on his “good” leg that we are treating. But, we are still successfully transferring him from here to there…most of the time!

So, we keep going…one day at a time.

Love,

Susanne (and Craig)

Numbness is Spreading, Books are Growing, May 13, 2009

Much to our amazement, it’s now been three months since treatment stopped. The original forecast was that Craig living more than two months would be amazing. So, he continues to astound.

Craig calmed down somewhat today, and that actually seemed to help him communicate better. He was also able to sing more words, which apparently comes from a different part of the brain, so some phrases came through more clearly. I was able to read to Craig new parts of “The Journey” book about his life and some from the latest one on the Fact-Based, Spirit-Guided Path, and he was able to indicate his approval and some input.

Kim Klein, our hospice nurse, checked Craig out today. She is trying to get a speech therapist out to help us with some communication techniques. Craig’s blood pressure, which was fairly high for him on the weekend, was back to normal. However, we discovered during the exam that numbness is now spreading down from the right side of Craig’s face, where it has existed for months, into his right shoulder and down his torso, front and back. We assume that this is linked to spreading of the tumor through the left parietal brain lobe.

Tonight we watched the movie “Guess Who’s Coming to Dinner”, about an interracial couple in 1967 wanting to marry. It was a movie we had both seen before, but we enjoyed seeing it again and being amazed that in our lifetimes, such a marriage went from being illegal in many states to now when someone who could be their child is President.

Susanne

Crying Myself to Sleep, May 12, 2009

I cried myself to sleep last night. Grieving losses…feeling some lower moments…

We realized yesterday that the cane had become a superfluous item that we just kept moving out of the way. Craig’s not walking anymore. We can still transfer him between bed-wheelchair-commode-car by grabbing the safety (gait) belt around his waist – although even that is getting more difficult as his legs weaken.

Craig’s frustration level yesterday was very, very high (he was literally tearing his hair out!). He is thinking better than he can talk, and trying to make himself understood is getting more difficult by the day. Visitors often don’t realize just how limited his ability is because he has always been a good listener and they fill up the space with their words. Even my ability to interpret on his behalf is struggling.

We attended a visitation yesterday for John Schaefer, a member of Craig’s support group with prostate/bone cancer who died on Saturday. His wife Bonnie is in my support group. I’m glad we went…and it’s hard when I look through the eyes of wondering about Craig’s service.

I’m back in the middle of dealing with an ongoing legal issue with my business. It’s so hard to think strategically through challenges right now…I’m glad I have good help. But it’s a hassle I just wish wasn’t there!

“We carry around in our heads these pictures of what our lives are supposed to look like, painted by the brush of our intentions. It’s the great, deep secret of humanity that in the end none of our lives look the way we thought they would. As much as we wish to believe otherwise, most of life is a reaction to circumstances.” Paul Richard Evans, “The Sunflower”, p. 355

But, today is another day. The sun is shining. Craig is painting out his frustrations. And, we go on…

Love,

Susanne

Difficult Weekend, May 11, 2009

As we’ve mentioned, at the end of each day, we note the “roses” and “thorns” of the day…and there are always more roses than thorns. This weekend tested that scenario a bit, as either medication doses, tumor changes, or a virus hit Craig’s intestinal system. Managing Craig physically is challenging most days, but diarrhea added a new level of complexity and exhaustion (I got better at it by the end of the weekend, however!!). So, the hospice nurse was in twice for visits and adjustments. Today he seems to be mostly back to “normal” – Yay!

On the roses side, Craig’s daughter Michelle and granddaughter Karida were in for the weekend. They helped me make a giant pot of applesauce for Craig, which he loved. Being on a rice, bananas, and applesauce diet was not thrilling for him, but he was relatively compliant! Four-year old Karida (5 in June) drew us some great pictures, too. It was a challenge trying to minimize her awareness of Grampa’s difficulties. On the other hand due to her mother’s excellent preparation with her, she was also able to briefly talk to Grampa about passing away soon.

I ran across a quotation recently that seems like it fits what I’m feeling and facing:

“There are times, it seems, that God throws a cosmic switch that moves the tracks beneath us, hurling our lives headlong in a new and uncertain direction. Of these times just two things are certain: It’s best we don’t know what’s ahead. We can never go back.” Richard Paul Evans, “The Sunflower”

Here are the last of the current batch of photo montages—I’m finally caught up! These ones are of Craig with friends:

www.claricomm.com/Friends_Mar-Apr_2009.pdf

www.claricomm.com/Friends_Apr-May_2009.pdf

Love,

Susanne

In the Peaceful and Creative Zone, May 7, 2009

I’ve been so busy writing other things, that I forgot about writing for the blog! My apologies…

We’ve been in a peaceful and creative zone over this last week. On May 2, we attended an all-day symposium on brain cancer at The Gathering Place. Our social worker at the Ireland Cancer Center, Jaime Hein Foyle, coordinated the event. Dr. Nock, our oncologist and Dr. Einstein, our radiation-oncologist, were both presenters, and we knew many others there as well. Craig made it through the day with only two short rests/naps, so we were quite amazed!

That evening, a new book was born as we talked about the day. For quite awhile we have talked casually about taking what we’ve learned and done over this 2-year cancer journey and write a book. Honestly, we figured I’d write it after Craig passed! But, here we are doing it, and I’m glad to have Craig’s input. The focus will be on sharing the tools of the “fact-based, spirit-guided” approach to cancer. It feels great to be book-creating!

On May 4th, Arlene Nedd Green came to visit. She, along with Pleasant Montgomery, visited Craig’s Sunday School class at the Federated Church in Chagrin Falls when he was a teenager and shared about the Baha’i Faith. This was Craig’s first introduction to the religion (he later became a Baha’i at Hiram College). Arlene now lives out of state, so this was the first time they had seen one another in about 20 years.

Craig’s legs are becoming increasingly weaker with some bouts of pain in them. We are managing it with increased steroids, ointments, and Ibuprophen. I couldn’t get him out of bed one day for a few hours until a caregiver could come to help. We were scared that the time of being bedridden had arrived, so we both felt relief when the steroids worked and he could get up. The steroids are helping him communicate somewhat as well, but we are doing more and more hand motions and guesswork. We got out this week to our support groups and today for haircuts, so we are doing our best to live as well as we can.

Craig’s still painting and giving me input on the two books underway when I read the content to him. The music therapist got him singing and drumming today, too. We have watched two movies and recordings of a variety show we both performed in years ago.

Craig sleeps until he wakes up or is ready to get up and shower, so our schedule these days is very fluid and constantly changing. I work and snack until he’s up and then fix breakfast for us both. Often it is so late in the morning that we only get in two meals and a snack during the day.

Here are links to a couple of photo montages (I’m catching up!):

www.claricomm.com/Craig_and_Family_Mar-Apr2009.pdf

www.claricomm.com/Craig_Living_Fully_AprMay2009.pdf

Love,

Susanne