Reblog: fighting childhood cancer

Mytwosentences 109.

From one of my favorite blogs. Edward can say a lot with two sentences and a photo.

SoCS: What I would like

I would like to spend a leisurely time writing an amazing SoCS post. I would like to snap my fingers and get everything organized and accomplished because there are many appointments and obligations coming up in the next week and a half, including helping a daughter move to another city for her summer internship.

Obviously, snapping my fingers isn’t going to cut it.

So, short and sweet and on to the next…
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This week, Linda’s prompt for Stream of Consciousness Saturday is: “ke.”  Use the letter combination at the beginning, in the middle, or at the end of the word you choose to base your post on.

Join us! Find out how here:  http://lindaghill.com/2015/05/22/the-friday-reminder-and-prompt-for-socs-may-2315/

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One-Liner Wednesday: truth

“If it is true, then science, psychology, poetry, and philosophy will also be seeing the same thing, but from different angles, at different levels, and with different vocabularies.”
– Richard Rohr, Immortal Diamond, p. 132

Please join us for Linda’s One-Liner Wednesday! Find out how here:  http://lindaghill.com/2015/05/20/one-liner-wednesday-love-is/

Sunday morning thanksgivings

The word Eucharist means “thanksgiving.” Here are a few things for which I am thankful this Sunday.

* I got to attend Mass with my parents. This has been a common practice over the last five years, after they moved into their senior residential community, but it has been a rarity lately. My mom has had a string of health issues, the most recent of which I wrote about here, so she hasn’t been able to get out to church many times this year.  This spring, Dad turned 90 and Mom turned 83 yesterday. I am also thankful to still have them with us and doing comparatively well. While they have had challenges, they are in better shape than so many other folks their age – and so many others were not blessed with this many years on earth.

* We prayed for those affected by the earthquakes in Nepal and took up a collection to aid them.  I was grateful for the opportunity to help.

* During the intercessory prayers, we prayed for Sister Rose Margaret on what would have been her 80th jubilee as a Sister of Saint Joseph of Carondelet. Rose Margaret died just before Christmas. She was an amazing person – bright, knowledgeable, an expert in Scripture and theology, skilled in pastoral care, an excellent preacher, kind, generous, loving, and Christ-like – with an Irish twinkle always in her eyes. Called to the ministerial priesthood by God, she was not able to be ordained under current Catholic doctrine, but she lived out priesthood every moment of her life as a sister. She had been an inspiration to Sarah’s Circle. At her sixtieth jubilee, Sarah’s Circle members attended along with the sisters in her order, so she had two circles of women with whom to celebrate her special anniversary. Today, I gave thanks for her time among us and her lasting legacy.

* When I arrived at Mass this morning, my mother told me that the memorial service for our friend Peter had been set. After Mass, Nancy, the music director and a longtime friend, and I had a long conversation about Peter, who had been her colleague for decades. Peter was the organist/choirmaster at Trinity Episcopal in Binghamton NY for many years, as well as the director of Harpur Chorale, the most select choral ensemble at Binghamton University. As accompanist for University Chorus, he was one of my first friends when I moved to the area and became one of the few people for whom I have ever worked when I served for two years as his assistant at Trinity. (Technically, my title was organist-in-training, which didn’t fit very well as I had been playing for over ten years by that point.) Peter was one of the few people left he knew me as a professional church musician.

Peter had incredible range as a musician. He could play organ repertoire across a range of styles well. He had a profound understanding of liturgy and service playing. He could teach choral music to children, teens, college students, and adults through the age spectrum up to seniors. He composed – choral arrangements, hymn introductions and harmonizations for organ, piano pieces. He taught piano and organ; he was my older daughter’s piano teacher for almost ten years. He could play jazz piano. He was a great accompanist, even managing the nearly impossible orchestral reductions for University Chorus rehearsals. He sang bass, although we didn’t get to hear him much as he usually had to conduct or play.

Peter was also generous, as a musician and as a friend. He collaborated well and managed to keep his cool, even in tense situations. He was a good storyteller and had led an interesting life. His sense of humor was gentle, rather than biting. While he spent most of his time on music, he also loved the outdoors, especially if whitewater canoeing was involved.

Peter’s death was quite sudden and we are still all a bit shocked and holding his wife, daughter, mother, and the rest of his family in prayer. We are also giving thanks for his life among us, doing what he loved, and sharing his gifts with us all.

visiting palliative care

First, to set everyone’s mind at ease, no one in my life has a terminal diagnosis. Sadly, it seems that most people when they hear the words “palliative care” think that it is the equivalent of hospice care, but it is not. Hospice uses palliative care services with those who are experiencing their final months of life, but palliative care is available to anyone of any age and diagnosis.

Palliative care is a team-based, multidisciplinary approach to managing pain. Frustrated by the poor pain control following the compression fracture and subsequent vertebral collapse that Grandma had last fall, and the loss of appetite, weight loss, and increase in a-fib that followed, we managed to get a referral to the palliative care practice in March.

We are blessed to be working with the amazing Sister Hermie. I know in some places all nurses are called Sister, but Sister Hermie actually is a Catholic sister. I’m not sure what order.  She is originally from Africa, but is working as a nurse-practitioner specializing in palliative care here in the US. She is open and engaging, with a lovely smile and ready laugh. She manages to get the medical information she needs by asking questions within the context of storytelling. Even Grandma, who is endowed with a natural New England reserve, is charmed by Sister Hermie!

We are so grateful for Sister Hermie’s care and expertise. She immediately added a medication to treat nerve pain and the improvement was noticeable in the first 24 hours. Grandma has been able to go down to the dining center with her friends on a regular basis, to go on short shopping trips, and to eat better and gain weight.  The pain relief has afforded the opportunity to move forward with physical therapy, which makes her stronger and more functional, although she has also had to accept that she will never be able to do some of the things she used to do prior to the break. She has started to add massage to the treatment mix, which will be especially helpful when the physical therapy treatments end.

While the pain is better controlled, it is not eliminated. There has to be a balance between pain relief and the ability to function. It’s not helpful for her to be pain-free but too drowsy to do anything. Still, she is so much better the last two months than she was in the six months prior that it feels like we have Grandma restored to us.

Thank you, Sister Hermie!

Unfortunately, palliative care is not being fully utilized. Even many of the medical professionals in our community don’t know that it exists, so they don’t request referrals. We had to research it ourselves and then ask the primary care provider for the referral, but it has been worth it. I encourage anyone with a loved one who is dealing with chronic pain, whatever the cause and whatever their age, to look for a palliative care specialist, if their current pain control regimen is not sufficient.

SoCS: growing up in the sticks

I grew up in the sticks.

It’s an expression I don’t hear much anymore. OK – I don’t hear it at all anymore. I’m not sure how widespread its usage was but it means to grow up in an out-of-the-way place. I grew up in a town of 200 people, give or take, in western Massachusetts along the Vermont border. We had a little general store which had the post office in it. We had a paper mill where most of the people in town worked. We had a school that went up through eighth grade. We even had a little bar/restaurant called “The Club.”

Everything else – big grocery stores, clothing stores, the high school, doctors, banks, etc. – was twenty miles away.

So, to me, where I lived was the definition of  “the sticks.”

I was surprised after I moved to Broome County NY – aka Greater Binghamton – that the definition of “the sticks” was different. In New York State, it seems that everything gets compared to New York City. There is The City, its suburbs and Long Island – and everything else becomes “upstate,” mashing together large cities like Buffalo, Rochester, and Syracuse, with smaller cities, towns, villages, and very rural areas, such as the Adirondacks.

So even though I live on the southern border of the state, just a few miles from the state line with Pennsylvania, I am “upstate.” I live in a town that is a hundred times larger in population than my hometown, about the size of the twenty-mile-away city that we used to go to for shopping and services when I was growing up. My current town is a suburb of Binghamton, which is a city with its own opera company, symphony, minor league baseball and hockey teams, and all kinds of other amenities that were much further afield when I was growing up.

Yet, because we are small compared to NYC, we are considered to be “the sticks.”

Go figure.
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Linda’s prompt for Stream of Consciousness Saturday this week is: “stick.”  Come join in the fun! Find out how here: http://lindaghill.com/2015/05/15/the-friday-reminder-and-prompt-for-socs-may-1615/

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adge by Doobster @MindfulDigressions

 

One-Liner Wednesday: education

“Educating the mind without educating the heart is no education at all.”
– Aristotle

This post is part of Linda’s One-Liner Wednesday.  Join us! Link here:  http://lindaghill.com/2015/05/13/one-liner-wednesday-throw-em-a-pool-noodle/

Mother’s Day

Last year on Mother’s Day, I was with my husband B in Honolulu with both daughters E and T and son-in-law L.  You can read about it here and here.

This year, B and I will be having Mother’s Day brunch with both of our moms and my dad in the dining room at the senior community where they all live. I am especially grateful to be able to celebrate Mother’s Day with with my mom and mother-in-law this year because the past year has been rough for both of them health-wise but they are both much improved and able to enjoy the day, which is oddly summery for mid-May.

Meanwhile, E and T are on an adventure together in New York City. They converged there on Friday, E from Honolulu HI and T from Syracuse NY, and are staying with my sister. E is attending Japan Day in Central Park because six members from jpop phenomenon AKB48 will be performing. E’s master thesis is about the fandom, especially the online fans outside of Japan, so this is a great opportunity for her to make connections and conduct interviews for her research. T has just finished her semester in her master’s program and came down to help her sister for the weekend. It is also their only chance to get together this summer because T will be doing an internship assisting with botany studies in New York State parks. (Way to go, T!)

I’m so happy that they will have this special long weekend together. Their bond with each other is one of the true joys of being their mother.  While B and I won’t get to see them together, we will get time to see them separately. T will get a couple of weeks at home before her internship begins and we just made reservations to go to Hawai’i in June to see E while L is in London working on his dissertation research.

The generations of our family illustrate that being a mom is forever!

when things come in threes

Three has been an important number for me.

I was one of three sisters.

Trinity has been one of the themes in my life, from church to a high school friend to the name of my younger daughter.

There are lots of sayings about events – good or bad – happening in threes.

“The third time’s the charm.”

This afternoon, on the third day since the events of the stream of consciousness post I wrote this morning, I read this call for submissions from Silver Birch Press, making it the third instance of dealing with the meaning of names in as many days.

I have to write a poem for this. It was meant to be.

I’ve already been through several drafts in my head and two written ones. I think I will be bringing it to my poetry group this week rather than what I had planned to bring so that I can have it in shape to submit.

Here’s hoping that this poem will be a good-thing-that-comes-in-threes…

SoCS: the meaning of names

On Wednesday, I went to hear my friend Pat Raube and Martha Spong  of RevGalBlogPals read from their new book, There’s a Woman in the Pulpit. It’s one of those rare times when a publisher offered a book deal because of a blog.  It was great to be able to attend the reading and get my book signed.

Pat’s reading included a reference to her daughter’s name – Joan – and for whom she was named. I immediately thought of a welcome ceremony that Pat’s soul-sisters of Sarah’s Circle had held for Joan as an infant, which featured a coat of many colors that Pat had made for Joan.  It also included a personal blessing from each person in attendance, given verbally at the time and recorded in a book which Pat gave to Joan when she turned sixteen.

When we had a bite to eat together after the reading, the Sarah’s Circle members in attendance were reminiscing about that day and telling stories about names and their meanings and how we came to be called what we are called.

Even though Joan is about to graduate from Oberlin later this month – with Michelle Obama as commencement speaker! – I remember that I had written my blessing to her about the origin of our name. Joan (and Joanne) come from a Hebrew root and I have heard them translated as “God is gracious” or “gift of God” or my favorite “God’s gracious gift.” The last is the one I chose to incorporate into my blessing for Joan.

When I was a first year at Smith thirty-six years ago, I studied Latin with Professor Skulsky. One day she went through the class and told us all the origin of our names, although she was disappointed that none of us had names with Latin roots, like Amanda, which means “the woman who ought to be loved.”

Years later, there was a rise in popularity of Amanda as a name for new babies. My younger daughter had a number of same age Amandas in her class. I wonder if they knew the meaning of their name…

[Update: This post now has a postscript.]
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Linda’s prompt for Stream of Consciousness Saturday this week is: “name.”  Please join us! Find out how here:  http://lindaghill.com/2015/05/08/the-friday-reminder-and-prompt-for-socs-may-915/

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adge by Doobster @Mindful Digressions