Eulogy and Envoy

Dear Readers,

Thanks so much to all of you who have followed Mom's story.  Since my last post, so much has happened.  We had incredible nursing care.  We had great family time.  And our mother had a beautiful send-off.  She was surrounded by her husband, all four of her children, four of her five grandchildren, one of her sisters, and her lead nurse from hospice.  Through it all she was aware and very much herself.  We were able to tell her we loved her, we would miss her, and that we would take care of each other the way she took care of us.

On the quote wall, she had written: "Our greatest glory consists not in never falling, but in rising every time we fall" (Oliver Goldsmith).  My sister found a small quote book of Mom's (given to her by one of her students) in which she had circled and starred some of her favorites.  Next to this Goldsmith quote she had written: "Of course."  Of course.  

I knew I would be sad.  But I did not expect the joy to be mingled in as well.  Her passing felt very much like a rising.  I now feel the full force of her presence more than ever, though I suspect the hardest part is yet to come.  My favorite part of the day is the moment I wake up, before I realize that this is real.  

Thanks to all of you who sent kind words, kind thoughts, or offered your presence in some way at this past week's services.  It was a comfort to the whole family and to her friends.  Several people have asked me for a copy of the eulogy.  Here it is (with more quotes from the wall!):

It is hard to be alive. For a lot of people it’s hard to wake up and the morning and lug their bodies out of bed, for some it’s hard to face what they see in the mirror, and for most of us it’s hard to find the daily courage and concentration to live the life that we want to every day. So many people have lived and died in this world that it’s hard to imagine that anything any of us do has meaning. It seems like with all the people that have lived and breathed that someone would have already figured out what there is to be figured out already. But, as I have been reminded in many ways throughout my life, you don’t know everything. But it’s nice to think each of us, by the end of our lives, can figure something out. And we can take what we have learned and pass it on to those who are just beginning their lives, to make it a little easier for them and for the world. 

Rosie Kelly, my mother, knew a lot of things. And at the top of list of those things was how to listen. She was a humble woman who knew how to take advice from her elders and from the 3 and 4 year olds she constantly corralled. She looked for beauty and wisdom everywhere. A concrete example of this is in the bathroom of the home she created at 1830 E. Dugan Hollow Road in Madison, Indiana. Taped on the bathroom wall, in perfect view during the numerous daily potty breaks, is a collection of sayings and quotes that my mother started and others added to. I never asked her why she began this, but I don’t feel like I am stretching the truth in thinking that it was her intention to provide everyone who passed through her bathroom with a moment of reflection upon their lives. I say this not to make my mom sound like a Buddha, imparting her priestly knowledge on anyone that she could, but simply because I am like her. I am easily distracted, especially by the beautiful and fun things of the world, of which she taught me there are many. And at different points in my life when I have found myself sitting on the toilet, a small moment away from the constant demands that come with being alive, I have wished for those quotes to be taped on the wall across from me so I could use those minutes of reprieve for thinking about the beautiful parts of life. 

So today I ask you, to take a break from the worry and demand of your life, and think about what a beautiful thing it is to be alive. What a beautiful thing it is we are all here together. And let us all take a moment to listen to handwritten pieces of advice that Rosie Kelly took time out of her life to stop and write down so she could be reminded —every day. 

The first is from naturalist John Muir: "When we try to pick out anything by itself, we find it hitched to everything else in the Universe.” 

or, as he said another way, 

"When we try to pick out anything by itself we find that it is bound fast by a thousand invisible cords that cannot be broken, to everything in the universe." — John Muir. 

She didn’t write it, but she lived it. I would often go looking for my Mom during or after school with some trivial question or request. When she wasn’t in her classroom, I would ask one of her fellow preschool teachers where she was, only to have them respond, “Where do you think she is?” And I knew the answer was always, “The woods.” She was constantly in awe of nature and taking lessons from it. One of Allie’s friends, Amanda Acker, said about her, “I remember her marveling at the plants growing up through the rocks.”  

She was someone who appreciated every inch of the world and viewed it as a gift for us soak in. From the countless beautiful flowers that she spent her free time cultivating to the snakes and spiders that we found around our house. I was taught never to kill snake or spiders. In fact we have about 6 books on how to identify different types of snakes and spiders. Because mom appreciated all parts of nature and took lessons from them. 

She looked at the cycle of life and death as just another part of nature.  As a nurse at Methodist Hospital, Rosie cared for patients who had severe head and neck injuries many totally debilitating, some fatal.  As a Lamaze instructor, she coached parents who were bringing new life into the world, many of whom invited her to attend and assist those births.  She knew the full circle of life intimately.  Maybe she had the ability to actually see those invisible cords of nature.

There is a picture of her on the beach, coffee mug in hand, the sun barely up, bent double, looking for shells.  Which leads us to another of her favorite sayings:

“Wisdom is oft times nearer when we stoop than when we soar.” — William Wordsworth 

Mom, she was a seeker.  She was curious. She researched and valued and was intentional. She sought out different approaches by reading and sharing with others. She never thought she had the 100% right answer but she was excited about that small margin of uncertainty. It left room for wonder.

I remember numerous times coming home and being upset at a classmate or a teacher and Mom relentlessly responding to my complaints with, “Well, how do you think they view this same situation?” or “Well, they are doing what they think is right” and countless times I was so frustrated! I just wanted to complain! I wanted to take the easy route of exclaiming that they were wrong and bad! But Mom gracefully led me down the difficult path of humbling myself enough to acknowledge that everyone is feeling what they are feeling. We don’t know everything. And everyone has a right to think, feel, and be the person that they are. In doing this she laid a great foundation for me, my sisters, and everyone who she had an opportunity to teach.  She taught all of us that all of us, ACTUALLY ALL OF US, EVERYONE WHO IS ALIVE, is a part of a family, and we should think, feel, and care about each other. 

A good example of this is when she gave her commencement speech to the graduating class of Shawe fourteen years after first having them in class. She looked at every graduate as they sat in their circle of chairs and called each one by name.  In order.  She did not have a seating chart.  Dad tried to talk her out of it.  What if she were nervous and stumbled on a name?  But she didn’t.  She looked at them then as she did the first day she met them— as complete, unique, whole individuals.  She really saw each one, as she did each child, each shell, each bird.  She bent to meet them where they were.  In so many of the moments of her captured on film, she is squatting.  To plant a tree, to talk to a child, to be where she can really see.

Which brings us to our last quote: “The greatest pleasure of life is love” – Euripides.  

And for this I am going to start with words spoken by my father: “Our commitment began when were 14 and 15, as a freshman and sophomore in high school. I had heard of Rosie York when I was an eighth grader, but I didn’t know who she was until I was a freshman.  She walked into the gym when I was sitting on the bench.  I liked her athletic walk and all the curves of her body.  But she really was just athletic.  I liked her short hair cut.  I liked her freckles. But the more I got to know her, I just liked how sweet she was and how she loved me back.” Now Dad, I would never have the unique connection you had with Mom, but I have to say we have all felt something like this.  Especially “I just liked how sweet she was and how she loved me back.” Love is such an easy word to abuse, misuse and often confuse with other emotions. But I have never felt love more than the love given by Rosie Kelly. She is a woman who constantly accepted those around her. From nursing to childcare, she cared for so so so many people.  Accepting each person and treating them with the same acceptance and care with which she treated her own children. It is amazing. I, her son, who lived with her for 18 of my 23 years of being alive, still am in constant amazement of her ability to love everyone around her, to take in every piece of so many people’s being and to accept and care for them. 

Let me take a moment to care for you all. Mom has gotten this love back a thousand-fold from the entire community, especially these past four years, and for that we are so grateful. Thank you. 

So you sitting there in those oh-so-uncomfortable pews, (sorry Father) I ask one thing of you today. One thing. Just know it is possible. It is possible to accept and love all those you come across. It is possible to be nice and kind to people right away. It is possible to open your arms and mind to everyone around and to love them, even if you don’t like them or even know them. And it is beautiful to love those who love you.  My mom, Rosie Kelly, showed me and my sisters that every day since we have been alive. So take today to love those around you and to remember Rosie Kelly. 

Much love,

jk

Scan Results and Charlie Parker

Hello dear friends and family,

As you may have heard, the results of the July 18 scan were mixed-- no visible tumor in the cerebellum but swelling in the frontal lobe (according to Dr. Breneman).  While we are of course happy that the radiation seemed to be effective in eliminating the tumors, we are facing the reality that Mom's condition is declining.  She is no longer able to walk or talk much and even eating has become a bit of a struggle.

At the appointment Dr. Breneman suggested that it might be a good time to contact hospice.  Yesterday, we met with two wonderful people, Tammy Eigel and Doug Schanding, both fellow Prince of Peace goers, to complete the admit process for hospice.  It was an emotional meeting; Tammy's daughter was a student of Ms. Rosie's in preschool and the two of them were kindred spirits. "Nettie loved bugs," Tammy said.  That pretty much cemented the bond.  But the discussions were fruitful and ultimately, we decided that it would be best not to seek further treatment at this time.  Of course, that can change, as both Tammy and Doug assured us, but for now, a little peace is in order.

The visiting nurses will be in today to do their first check-in.  A wheelchair has been ordered.  Dad expects to check-in with Dr. Breneman this afternoon with a few questions and to hear the results of the tumor board meeting.  So I will keep you posted as developments unfold.

To close, I will share another bit from the quote wall.  Charlie Parker's words were written in Mom's beautiful print: "Music is your experience, your thoughts, your wisdom.  If you don't live it, it won't come out of your horn."  She has been singing along lately as we sing.  Yesterday, the Chestnuts were "serenading" her with our regular Tuesday night practice.  She looked up and smiled for a moment.  She seemed to enjoy the personal concert, and I saw her fingers moving with the music.  I think she was dancing.

Dance on,
jk

Radiation Complete, Scan Soon

Hello friends and family,

Just wanted to write a little to let you know how Mom is doing.  She finished her radiation treatments (twenty-four in total) a couple of weeks ago and will have her next scan July 18th.  She has been able to get out and do things, but the going is slow and sometimes requires two people to help her get where she needs to go.  Most of the time, she can manage holding two hands, but this weekend it was nice to have wonderful people around and there could always be a support person on each arm (sometimes an extra or two to get the door or smooth a rug).  She went to the parade and watched from our good friends' front walk.  She joined the Cheathams for their annual fireworks party.  And she made it down to Aunt Georgie's Regatta festivities.  She is amazing.  She seems to really enjoy these outings.  And she loves seeing everyone, even if she cannot always express it.  As she was leaving Aunt Georgie's, she said, "I'm really glad Dad-- " and then she made a beckoning motion with her hand.  "Brought you?" I asked.

"Yes," she said.

Yes.  It always cheers me to be around her.  She seems relaxed and at ease most of the time, and if not, she has discovered that chewing gum helps relax her.  So we are stocked up on gum.  :)

Thank you all for your kind words, kind thoughts, kind gestures.  I was at the house early this morning and saw a quote Mom copied and stuck to the bathroom wall (if you've ever been to their house, you know about the quote wall):  "A good exercise for the heart is to bend down and help another up."  Many hearts are getting a lot of good exercise these days.

Love to all,
jk

What We Know

She did it!  She got that boy graduated and celebrated him in style on Saturday.  And yesterday she had a full and active Mothers' Day.  She opened her iPad (finally!  Esphyr has been waiting and waiting, but Mom insisted we wait) and the kids were happy to give tutorials.  Then we went out into the beautiful day and Mom joined in the Frisbee game (with Dad spotting).  She was amazing at catching for only using one eye.  (She's still having the double vision, so she's been using her painter's tape patch, which is a cheerful blue (see above).  I love it.)  Then we grilled out and and ate out under the pine trees.  Her appetite is good-- she enjoyed the burger and the sweet potato fries.  :)

Treatments should start this week.  She is opting for the longer course of radiation (five to six weeks) because it has a better chance of being more effective both in the short and long term.  Dr. Breneman and Dr. Morris decided not to do the chemo concurrently, so that will start after the radiation.  Dr. Breneman said that yes, of course, she can take a break for the wedding.  (Allie & Red wed June 14th in Virginia!)

One thing we learned is that there may or may not be tumor cells in the spinal fluid.  There were no cells present in the spinal tap (nor in the spinal scan, which would not show the fluid but shows that there are no spinal tumors), but there were protein levels that indicated that there might be.  At our last visit on Tuesday, May 6th, Dr. Breneman explained that the protein could be elevated because of contact with the known tumors.  This was encouraging to be because I had thought that it was a given that there were tumor cells in the spinal fluid.

So that's the latest.  Sorry I have not been keeping up as well as I should.  This is the end of my semester, so I have been grading many essays and answering lots of emails.  But I will finish up this week and hopefully keep you better informed.  Thanks all of you for your kind thoughts and words.  They lift us all but especially Mom.  As we were leaving Bloomington, Dad and Mom started singing "Cat's Cradle."  I just sat in the back, listening and thinking.  How lucky we all are.  All of us.

Love and gratitude always,
jk

Recurrence and Laughter

Dear Friends and Family,

Mom's MRI last week showed new tumor growth (three) in the cerebellum area.  This explains the pain she's been having.  Of course, we knew that it was very likely this would happen, we were not especially happy to hear the news.  Yesterday she had a full spinal MRI to determine whether there are any tumors there.  The results of that scan will go to tumor board today, and the board will recommend a course of treatment.  Then, Mom will decide whether to accept their recommendations.

I admit that I felt pretty flattened Friday and Saturday after the news.  But Sunday was a nice day; we spent most of it with Mom and Dad, and she is laughing a lot and getting out-- we walked half a mile in the gorgeousness of spring.  In her words, "I don't want to dwell on it."  It being the cancer of course.  On our trip yesterday, we just marveled at the red buds and new leaves and the amazingness of spring.  It was a great way to celebrate Earth Day (minus the driving and gas-burning, I suppose).  She listened with the kids to Roald Dahl audio books, and again laughed a lot at Dahl's brilliant sardonic wit.

So think of her, as I know you do, but when you do, laugh.  Or at least smile.  :)  She is.

We'll let you know what the board says.

Cheers,
jk

News from Dr. Breneman's Visit

Hello all,

The visit with Dr. Breneman Tuesday was reassuring if not entirely clarifying.  Basically, he stressed the main point: no tumor is recurring, "the scans are clear."  That's always good to hear.  He also said that the Trental did seem to do its job, at least in the cerebellum.  Swelling was better there but not in the frontal lobe.  The swelling in the frontal lobe was probably caused by her 2010 radiation, he thinks.  He also said there is gliosis, or scarring, there as well.  For this, he recommended trying Memantine, a drug that has been typically used to treat Alzheimer's patients but has also recently proved effective for people with brain injuries due to radiation such as Mom's.  So she agreed to try that.

As for the nausea, it has subsided somewhat since going off the Trental.  Dr. Breneman referred Mom to an endocrinologist to determine whether the thyroid and her hormone levels might be contributing to some of her struggles (extreme fatigue, for example).  He said they might need some "tweaking." So that will be on the horizon.

He also suggested using a cane until her balance improves.  She was comfortable with that, and it does seem like a good idea, at least for now.  As part of the exam, Dr. Breneman had her walk across the room, and it was difficult for her.  She needs props, as they say in yoga.  And in yoga, the guiding principal is to honor your body.  It is different every day.  So she is honoring her body by modifying according to the needs of the day.

Dad has been working from home most of the week, so that was nice.  And Mom got to visit with her sister Jane yesterday.  I am looking forward to sneaking in a visit sometime today or tomorrow.  I always love to see her.

Thanks for all your kind thoughts and words.  March is almost here!  That's something to celebrate.

Cheers,
jk

Rough Week, Better Weekend

Hello friendly friends,

Just wanted to let you know that last week was rough.  After being intolerably sick while taking the Trental, the doctor OK'ed going off of it for two weeks to see if that was the cause of the nausea.  Well, the nausea seemed to be the same or even a little worse after stopping the Trental, which was discouraging.  Plus, Mom didn't seem to even want to eat or be up off the couch much (can you blame her?) because she was feeling so sick.  It was to the point where it was beginning to be cause for alarm.

Thankfully, Saturday and Sunday were much better.  She ate a little more and kept it all down (more than a small victory!) and perked up enough to actually have dinner at the table.  Another victory.  Emeka and I had a couple of events to attend, and I was worried it might be too much for them to keep the kids, but if anything it seems to have had a positive effect.  The power of grandkids.  I was saying something to that effect, something like: "You guys worked your magic," and Esphyr's head jerked around to look at me with eyebrows raised, her voice rising too: "You mean we have magic inside us?"  Yes, my dear.  That is what I mean.  Kid Power-- learned it from a certain clown I know.

So I began the weekend near despair and am coming out of it feeling a little encouraged, hoping today is another good one for Mama Rose and that tomorrow Dr. Brenneman will have some useful piece of information for us.  I'll let you know what he has to say.

Happy last week of February,
jk

PS Mom has started to get some fun mail.  Thanks to the senders!  It really does brighten her day.