Thursday, January 23, 2020

MaryLee Webber - Eulogy by Marshall Webber

Surprise Baby

My Mom was born in 1943 as the surprise baby to Epps Marshall and Elena Lowe Marshall in the tiny desert town of Blackfoot, Idaho. Mom often said that she had four parents, because her eldest siblings, David and Anita, were both several years older and lavished extra care on their little sister.

5 year old portrait
The daughter of ranchers and farmers, Mom grew up in hardscrabble poverty. There was no running water on the property until she was twelve, so dashes out to the out-house in the howling dead of winter were part of her growing up experience.

Mom considered these inconveniences to be mostly irrelevant. As she described it, “We would have rice and raisin pudding for dessert because there was nothing else.
Feeding the Lambs
We kids had no idea we were poor, because it was our favorite dessert!”

David and Anita doted on their younger sister, giving her that “best beloved” feeling in her family. In that tiny house that David and their father Epps had built, David and Anita would swing MaryLee high in the air like a pair of dock-workers and chant, “Shadrack, Meshack, and A-BED-YOU GO!” and toss her flying through the air onto her bed.

The Epps McCord Marshall Family:
front: David, Epps, Elena
back: MaryLee, Anita
Riding horses, learning the piano, and playing games which required no electricity and no money were how Mom spent her childhood. She attended feeble, storefront churches which never managed to stay running for very long, and this too became part of her spiritual expectation.

So let me pause here for a moment, and at the cost of surprising many of you, let you in on the secret life of MaryLee Webber: Mom was brought up to have two modes of interaction with people: either politely public, or unguardedly personal. This was a regional and generational trait that let her gloss over personal conflicts, while at the same time letting some few people into her private life where things were a lot more zany than the surface that she projected for the public.
Zanier than you thought,
but only when you weren't looking.

So let me clue you in: My mother was so sharp, her brain should have been continued on the next three people. In her youth, she was outgoing to the point of brashness. She also sported a darkly macabre sense of humor that fed on the absurdities of life. If you remember The Addam’s Family line drawn cartoons that ran in the New Yorker, that was right up her alley: a vicious inversion of the proper 20th Century American family. In college, she cackled over the satirical and controversial Smothers Brothers Comedy albums. Throughout her life, she privately reveled in the skewed visions of reality from cartoonists as varied as George Booth and his strange cast of characters to Gary Larson’s “The Far Side” panels. These, of course, became running family “in-jokes” which my sister and I can quote as shorthand for almost any situation. During the most trying professional times of my mom’s life in the late 1990s, she regularly escaped into edgy animated shows like Ren & Stimpy, I AM Weasel, and Cow & Chicken. However, she rarely let her enjoyment of the absurd and dark humored show in public.

The siblings
As was typical for her generation, her older brother went off to University for a degree and worked a surveying job in the summers to put money away to pay for both of his sisters' college educations. 

The Beauties
My Aunt Anita worked for the local phone company before she left for college, and my mother would leave High School at lunch time and join her sister at the local lunch counter. The two beauties appeared in public as a pair of working office girls. This experience with her sister gave Mom a sense of hope that there was more “world” out there to experience beyond a dull life in a one-horse town.

Off to College!
Her brother David was eventually able to pay for Mom to attend Whitworth College in Spokane, Washington, in 1962 to pursue a photo-journalism degree. At Whitworth, she glutted herself on the college experience as only a small town girl could, siphoning up knowledge, culture and everything that always took an extra few decades to make it to her small town home. She left time for silliness, however. One of her escapades included piling into a VW Van at midnight with some friends, including one who, for laughs, styled himself as the Guru “Drawah.” They roared around the snowy, wooded campus until Drawah proclaimed a random tree to be THE sacred tree and did donuts around it in the VW. Mom later claimed that this was the closest she ever came to Eastern Enlightenment.

Between classes and silliness, Mom earned money on campus as assistant to the photo-lab manager, a World War 2 army photographer calling in his wartime benefits to get his degree. When this gruff character found out that she didn’t have enough money for bus fare to return home to Blackfoot for Thanksgiving, he took her home with him to his family of four. No, this was not my father. This was my Grandfather, research photo-journalist Bert Webber. That Thanksgiving, when he took his lab assistant home to his family, MaryLee met Bert’s number one son, Rick Webber.

My father was a seventeen year-old chatter-box, so excited about whatever he had just learned that he wanted to share it...whether you were interested or not. My mother’s father, Epps, was a loving, but “strong silent type,” as was typical of his generation. Mom found talking with Rick to be like drinking straight from the fire hose. Still, finally, someone who could hold up his end of a conversation!

When I was young, I always thought that my mother was just average smart, and my father was the really clever one because he could design, build, or improve anything. Somewhat later, I realized that while Dad was innovative in his field, my Mom was not only brilliant, but was also widely read across history, philosophy, and world literature. If I wanted to build something, I talked to Dad. If I wanted to know why to build it, whether it had been built before, and what the socio-economic consequences of building it were, I talked to mom. If mom got to me first, I usually wound up reading about someone else building it.

My parent’s courtship brought its own absurdities. Mom was grafted in to the Webber family 
in Spokane and joined in the hiking, camping and on one terrifying trip, spelunking, or cave-exploring. My grandfather, Bert, continued as her professional mentor and shot poses of her to be used as portraits for her newspaper columns.

Since my Dad was about to do two years in the Coast Guard right out of high school, Mom agreed to be “his girl” while he was on the high seas. She was surprised and pleased when someone so young, travelling the world, decided that what he wanted most was to come home and marry her. Mom did mention that the communications arrangements were not very romantic, nor very private, especially ship to shore calls. “I love you. OVER.” “I love you, too OVER.” 

Richard Ebbert Webber and MaryLee Marshall, married on June 11, 1967

She let the mask slip a little there.

Modern female photojournalist in action, photo by
her mentor and future Father-in-law, Bert Webber
While MaryLee did complete her photo-journalism degree, she opted to teach high-school English instead. She had started to feel uncomfortable with the hyper-aggressive professional journalists who were disrespectful of their subjects. But her final decision was made by nearly being a side-lines casualty during an out-of bounds tackle at a football game she was covering. Five-hundred pounds of offensive and defensive players hurtling toward her as she tried to scramble out of the way in a mini-skirt.

As my father started his Engineering Degree at Idaho State University, mom started teaching English and Newspaper copy-writing at her old High School in Blackfoot.

The Webber Family, 1969

In 1969, I was born in my mother's hometown of Blackfoot. As young parents with adventure on their minds and no money, they worked like mad at their education and jobs and regularly camped all over the Pacific Northwest. When my Dad graduated, he got a job that could be a single income for the whole family. The exciting part was that the job was in New Jersey.

My Mom was thrilled to move to New Jersey. While in college in Spokane, she had made visits to Seattle during the 1962 World’s Fair and got a taste for what city living could be. For a girl from a one horse town, moving to the busy corridor between New York, Philadelphia, Baltimore and Washington, D.C. sounded wonderful. Mom came from the desert where sagebrush was as green as it got. Her move to the Garden State is one she never regretted. Small time girl goes to the big city…and only goes back to the small town for high school reunions.

The Webber Family, 1976
My parents moved to Westmont, NJ and mom stayed at home until a year after the birth of my sister, Leah, who was born in 1975. It was at this memorable point that MaryLee took my father gently by the throat and told him if she did not get out of the house to start working a mentally stimulating job, someone was going to get hurt. Mom went back to work in office management. She admitted later that it was more therapy than income. She loved being a mother, and was a great one. But there was more out in the world that she wanted to do.

About this time, my parents became involved with Laurel Hill Bible Church in Clementon. Until that time, our family had not been much in the way of regular attenders at church, though that slowly changed while my father was getting his degree. As his faith blossomed, my mother took her own faith out and gave it looking over and decided it was time to get serious, too. By the time my sister was born, my parents were at every service, every time the church doors were unlocked.

In an era when fewer American families gathered for meals, the Webber family usually ate dinner together in the evenings, with cloth napkins and with silver and china, a habit my parents set up so that from a young age, my sister and I could be taken out to any restaurant and have better table manners than most of the adults. (Tricky, mom.)

Moving up to the Stratford House, Sept. 1978
Mom’s clever modus operandi at the dinner table was the same one that she had used with her students while teaching High School in Blackfoot: "Get inside their minds, figure out how they think, so that you can help them succeed." She used the same method on my sister and I at the dinner table. Get us talking, distracted by the food, and then she and my father would often have a post-dinner debriefing where they discussed what my sister and I had said, where to apply pressure, where to back off, how to steer, and so on.

My parents were not trained in child development: They just did the things that they liked to do, took us along for the ride, and watched our reactions with great attention and then discussed our behavior in detail before adjusted course. Mom spoke with us and not at us. (Dad could carry on both sides of the conversation.) Our opinions were solicited to keep the conversation going. Most importantly, they confined their social guidance to ethical living, without any attempt to coerce Leah or I into their ideas for our careers or interests. Today, this is called “free-range parenting” and as a kid who was given his head to choose any subject to pursue, it was wonderful.

MaryLee, circa 1985.
This included our spiritual lives, where we were expected to understand the essentials of my parents' Christian faith, but the decision of whether or not to become believers in Jesus as our spiritual rescuer were necessarily up to us. Mom used to reinforce this by telling us, “You can only inherit customs from your parents, you can’t inherit faith. You must decide that for yourself. We want you to be the person God made you to be.”

I am truly grateful for my mom’s wisdom in being winsome and persistent when dealing with me, rather than trying get me into the kingdom of God with her boot in my back. I can say that I own my own faith, and I know that my sister can, too.

Our family changed churches in the early 1980’s, shifting our attendance to Grace Bible Church in Mount Laurel. Mom took up piano again for enjoyment and eventually learned enough about playing organ to offer to trade off with Grace Bible Church’s regular organist, Cathy Chattin, to give Cathy a break.

In their spiritual lives, mom and dad were a good compliment. Dad was an evangelist, the harvester who would encourage people to make their final decision for a life of following Jesus. As a teacher, my mom was a planter, a sower of seeds of spiritual thought and consideration for a later harvester to come along and help. The Gospel of John, in the 4th chapter records Jesus describing the need for both types: “What joy awaits both the planter and the harvester alike! You know the saying, ‘One plants and another harvests.’ And it’s true.”

My parents enjoyed the role of “auxiliary parents” to many here in this room today. 

My mother’s own experience of having been brought in to the Webber home on a cold November and my father’s enthusiasm for trying to parent any kid within arm’s reach helped set her on a course of loving and supporting kids and young people around her who were not her own family.

Webber Family, 1993, with our new 'plus one',
Brian Rykaczewski. They were married March 5, 1994.
One of those young people hanging around was my sister’s boyfriend, Brian Rykaczewski. When Leah was seventeen, Brian asked my parents for their permission to marry her, presenting a meticulously drafted plan to have both of them living on his single income within just a few years. To the shock of many, my parents said yes. My folks recognized Brian’s Christian faith, his drive, and his sharp business acumen when others only saw his youth.

MaryLee Webber
Certified Medical Assistant
Over the years, my parents worked a variety of jobs to keep food on the table. When Mom tired of the chaos of her office management job, she switched to medical office management.

This is the stress point where some marriages fly apart. Instead, my parents reverted to what they called, “Run the deer.” One wolf chases the deer while the other one rests, and then they swap. My father had worked while my mother had started Leah and I on our way through childhood, then they had swapped, and my father went back and retrained. Then he “ran the deer” while my mother re-trained as a Certified Medical Assistant, and back and forth over the years, each one back-stopping the other in various jobs while the other one took the next step up in their professional career.

This was exhausting. They often excused their lack of vigor in life with the quip, “We had a bad decade.” Still, when opportunities permitted, Mom escaped into historical fiction where she often found the lift of a happy ending to keep her moving forward.

Marriage of R. Marshall Webber to Sarah Boyle, June 21, 1997, in Fresno, California.
Mom got a daughter-in-law in 1997 when I married Sarah Boyle. Mom also got someone who shared her passion for historical fiction and could also keep up in conversation about a wide variety of historical, philosophical, and cultural fields. Having looked up to my mother as someone who could keep up with a broad array of subjects, I had unconsciously gone looking for someone who was as brainy as she was. She also got to switch to Grandma or “Mimi the Great” mode
Playing Piano with her first
Grandchild, Grace Rykaczewski
when her kids started supplying grandchildren. She was happy to take out her bag of teaching tricks for a new generation.

Mom eventually found a way to squeeze what she loved into one job. At my father’s urging, she pursued a Master’s degree in Adult Education from Widner University. When things got hard financially, she stopped for several years, writing it off as a missed opportunity.My father kept leaning on her try to go back and finish. Much to her surprise, Widner was happy to bring her back in, and she completed her Master’s degree. All of the cords of her professional life were finally braided together: Teaching, anatomy and physiology, and medical records management, to students that needed a confidence boost, and the opportunity to let her personal zaniness out of the box a little to keep her student engaged.

Back teaching, her first professional love. Still with Rick, both older and wiser.
She taught medical office management and medical assistance at Burlington County Institute of Technology to both adults and teenagers. She truly loved her students and sparkled as each one of them took wing in their new career. Her greatest disappointment was being forced into retirement by BCIT administration in 2008.

At the Rogers organ, Stratford Presbyterian Church
In recent years, to supplement her retirement income, mom began playing the organ at the Stratford Presbyterian Church. It was an ideal arrangement, she said. The congregation loved having an organist, and mom got to hear solid exegetical preaching each Sunday. For those of you here from Stratford Presbyterian, thank you for welcoming my mother in.

As some of you know, my father was diagnosed with a muscle wasting disease in 2000. By the time my mother retired, he was rarely able to stand. 
With the Rykaczewski family:
Leah, Collin, MaryLee, Rick, Grace, Brian, and Lilly.
Mom chose to care for him at home, even as he struggled to be out participating in symphonic bands with friends. She once cracked to me, “I married a younger man to take care of me when I was old. Oops.” They were able to get by together until both were diagnosed with cancer within a week of each other in 2015 
These times were particularly tough. But my mother, who always considered memorized Scripture to be her backstop in bad times, began repeating Second Timothy Chapter One, verse Seven to herself regularly: “For God has not given us a spirit of fear, but of power and of love and of a sound mind.”

If you knew both of my parents, you knew that my Dad kept rolling ahead with an ever present grin on his face. Mom reverted to her small town stoicism which kept her going from a well of deep toughness and faith that God’s Holy Spirit would give her just enough juice to make it through each present day. She worked to make my dad comfortable until his passing in August of 2016, while at the same time working to care for her own cancer.

With the Webber Family (Nov 2019):
R. Marshall, Miranda Elena, Sarah, Alexander Matthew, MaryLee
When it became evident in December, 2019, that her latest flare up of the cancer would be her last, Mom said to me, “I got four extra years that I wasn’t expecting!” Indeed, she had made new friends, resumed old friendships, traveled, and for a few years, was able to relax in her retirement.

When she was in her final days being cared for at Tom and Lorita Boyle’s house, the whole family was gathered for dinner on the other side of the house. We munched, talked, laughed and made all of the raucous noises that large family gatherings do when they are happy together.

I snuck out to see how Mom was doing, and found her in the bed, limp as a rag, but grinning. “What’s funny?” I asked. “I am attending my pre-wake,” she replied with dignity. When I nearly choked at this macabre comment, she continued, “Really! I’m enjoying just hearing my family all together with love in the other room. This is better than a wake, because I get to attend. Most of all, I know that when I’m gone, this type of love is how things are going to continue for my family even in my absence.”

The most remarkable thing I can say about my mother was that in her final days, she did not look at death, she looked through death, as if it were a piece of glass. Most people, even those of deep faith, look at death with trepidation. Mom saw no ending, just a mere transfer point, as benign as crossing a train platform to switch to the express for Peoria. I have never known anyone who considered their dying days with more faith that her Savior would greet her at the moment of her passing, and with so little worry for what she was leaving behind.

Wednesday, March 20, 2019


(I have children. Of course Cars 2 would be my reference for fragile.)

I had promised to blog more in 2019. I had promised a lot of things. I have a compromised immune system now. Lots of things are harder. But what I didn't expect was that the hardest part is not the things I can no longer do physically (I really did like mowing the lawn myself), but the emotional pit falls I keep stumbling into. In the past, I have been terribly judgmental of people whose bodies are failing and how they didn't keep up with the changes emotionally. They didn't accept their failure with grace. I now understand (a bit more) how difficult that is. I'm not accepting my limitations with grace. I'm snapping at my children for not picking up their rooms because in the past, I could have helped. I'm spending all that time lying down reading (which isn't, in itself the problem) except hardly any of that time is spent reading scripture. Instead, I am reading escapist books because I don't want to confront my anxiety about my fragility. I am broken in ways I can no longer hide.

I do not have the spiritual gift of faith. I have friends who do and they encourage me a great deal, but I have an average faith. It maintains itself intellectually out of habit but often feels like it fails me when I'm in an emotional ditch. How do I maintain my faith when it blossomed from going to church 3-4 times a week for services and bible studies and fellowship when now, it's a good week when I can manage, physically, to go once? I have volunteered with our Youth Ministry program for years and now can barely attend one meeting in 7. What do I do now? How do I live like a disciple essentially from my bed?

If you know me, you know my children are on the autism spectrum. Which means we live a life full of procedures and routines, because there is comfort for all of us in that. But, lately, I find that I crave the routine even more than they do, because it means I know what to do next. I was a good student in school because it was easy (sorry; I came out that way) and because it gave me a concrete path to follow of what to do next. I enjoyed pleasing my teachers the same way I enjoyed pleasing my parents. When I worked outside the home before I had kids, it wasn't much different. Then they were small and home all the time, and I had plenty to do. But now, they are away at school much of the day (except this winter, when someone was home sick, with me, at least every other week) and I have to spend most of my day resting anyway and the silence is oppressive. Shouldn't I be doing something?

I have a feeling the next year or so, I will be finding new ways to do things. I'm not sure I ever wanted a contemplative life, but here I am, with one shoved in my lap. I will never believe God doesn't have a sense of humor.

Saturday, February 2, 2019

7 Things to Look Forward to in 2019

(I started this blog post 2 weeks ago and then we got the flu. We did all have flu shots so we didn't feel like death, but it's been a lengthy recovery for me. So, trying this again.)

1. I have pretty much given up on television beyond the live tennis and futbol (Liverpool FC) that I watch. We still watch Doctor Who, of course, and Star Trek Discovery was interesting, if only for the excellent casting. But I don't like sitcoms and I've lost my patience with network series. We also don't do any streaming beyond Amazon prime. But I love movies. I've been trying to see Aquaman for six weeks. We did manage to see Into the Spider-Verse on Boxing day (it's excellent and beautiful) and I still want to see Mary PoppinsBumblebee and Ralph Breaks the Internet. Maybe A Star is Born. Like my books, I need my movies to have happy endings. Life is hard enough before adding sad fiction on top of the regular depression.

******Saw Aquaman last Saturday with my mother. Very fun; very pretty.******

Upcoming films to look forward to?

  • What Men Want looks very interesting even though I despised What Women Want
  • Isn't It Romantic could work.
  • Captain Marvel
  • Shazam! looks very funny.
  • Hellboy might be fun.
  • Avengers: Endgame
  • Pokemon Detective Pikachu could work. 
  • Aladdin. Maybe. I love the 1992 film.
  • Godzilla: King of Monsters
  • MIB: International could be fun.
  • Toy Story 4
  • Spider-Man: Far From Home
  • Lion King might be pretty.
  • Hobbs & Shaw absolutely.
  • Jumanji sequel; the first one was so funny.
  • Episode 9. Of course.
2. I read a lot of books. I love Goodreads because it helps me keep track of what I've already read and, more importantly, what I want to read next. However, my TBR pile hasn't fallen under 600 for more than a year and it's currently running at 682 while I'm (technically) reading 18 other books. I also am an equal opportunity reader: audio, digital and paper are all utilized, depending on where I am and how I'm feeling. I listen to lots of audio books in the evenings when regular headaches don't allow me to focus my eyes.

In 2018, my favorite new writers included

I also continued to read

Two male writers on the whole list; (well, Ilona Andrews is a husband and wife team, so 3). I guess I have favorites. But I am always interested in a male writer who can write women well.

Many of the writers I follow on Twitter encouraged those of who identify as WASP's to read books by authors who aren't. I've read at least a dozen excellent books and am trying to keep diversifying my author choices. I also managed to start reading romances with characters who are on the autism spectrum. Since I live with autism daily, I avoided it for years, but I've been pleasantly surprised by the quality of writing by Talia Hibbert especially.

3. I have never read the Bible all the way through before and am still working on that project. I'm using The Message edition at present and am currently in the midst of the Psalms. Of course, alongside is Anne Kennedy'Nailed It devotional as my companion. I expected to be able to speed through the Psalms but am finding them more challenging than expected. Somehow I quail at the thought of calling down God's power on my enemies, but I have no difficulty complaining to God about my problems. I expect reading through the prophets during the current political climate will be very interesting.

4. I am continuing to learn how to adapt my life with my new limitations due to my chronic Epstein Barr. I do still have grumpy moments when I can't do anything but lie down on my bed, but audio books help. We have a wonderful library with access to books in paper, audio and ebook formats and I take advantage of it often. And our church helpfully posts Sunday morning messages on its website

5. In March, I will take the children to San Diego to attend a final memorial for my grandmother. We have not been to CA since 2015 and so I have a niece, a nephew and a second cousin I've never met. Bring on the babies! Well, toddlers. The youngest is currently 15 months old.

*******************Insert another 2 week break**************************

Really, I just need to finish this blog post.

6. I am looking forward to a time when every encounter with my twelve year old daughter isn't a fight or a negotiation to get her to do homework. We've had a couple of ugly weeks here. I know she's trying to find out who she is in the midst of her disabilities, but this is painful. Any prayers for her well being welcome.

7. I'm actually feeling better this week, which probably means my naturopathic MD has found the right dose of LDI for me. It feels weird not to be exhausted every single moment of the day. But I'm sure I will adjust. Of course, I'm taking my daughter to see him this week. That will be interesting.

And here's Kelly.

Wednesday, January 2, 2019

I Took A Shower Today

Anne Kennedy, whose blog you should already be following, wrote glancingly about some new self help book about washing your face, and I've continued to think about her words in the weeks since she posted this. I don't wash my face every day and it started me wondering about why "self care" is so difficult for people with depression.

Then I was reminded of one of my favorite passages from Kathleen Norris' The Quotidian Mysteries: Laundry, Liturgy and "Women's Work:"

Our culture's ideal self, especially the accomplished, professional self, rises above necessity, the humble, everyday, ordinary tasks that are best left to unskilled labor. The comfortable lies we tell ourselves regarding these "little things"--that they don't matter, and that daily personal and household chores are of no significance to us spiritually--are exposed as falsehoods when we consider that reluctance to care for the body is one of the first symptoms of extreme melancholia. Shampooing the hair, washing the body, brushing the teeth, drinking enough water, taking a daily vitamin, going for a walk, as simple as they seem, are acts of self-respect. They enhance one's ability to take pleasure in oneself and in the world. At its Greek rook the word acedia means "lack of care," and indifference to one's welfare can escalate to overt acts of self-destruction and even suicide. Care is not passive--the word derives from an Indo-European word meaning "to cry out," as in a lament. Care asserts that as difficult and painful as life can be, it is worth something to be in the present, alive, doing one's daily bit. It addresses and acts on the daily needs that acedia would have us suppress and deny. Caring is one response to the grief of the human condition. (pg. 40-1)
(P.S. She also reflects upon acedia at more length in her book Acedia & Me: A Marriage, Monks, and a Writer's Life.)

One of my biggest struggles, living with chronic Epstein Barr, is finding the energy for self-care. Showers take a huge amount of energy and have to be planned almost days in advance. And I have to be very careful about the temperature of the water in my shower; if it's too hot, it will take more than an hour for my body to cool off again and I'll feel exhausted afterwards. Winter actually makes showering easier instead of harder because it's already cold outside and my body has that external help.

Then there are the days when acedia has me in its grip and I just don't care. I go to bed thinking, Yet another day I should have showered. This is why I attend a weekly Bible study at my church. I need reasons to get dressed and presentable at least one weekday morning. Well, I first started going when Alex was a toddler because they had free childcare, but that was 14 years ago. Now I go for me.

So, today I managed a shower, clean clothes, a quick trip to the grocery store, and several more calls to the pharmacy to find out why they haven't filled Miranda's anti-anxiety prescription yet. Apparently, the insurance company is sitting on it because it's expensive. And they're gone for the day. I left a voicemail.

It's like the company is schizophrenic: Miranda needs her meds to be in liquid form now because pills make her vomit and THIS IS BIG DEAL and takes weeks for approval. But Alex's testosterone shots? No big deal. Here you go. Isn't this a controlled substance? And you're just handing it to me for ten bucks? My insurance company shouldn't be my biggest cause of stress. Oh, wait, it's America in 2019. And I'm ranting. Time to stop.

Please, subscribe to Anne's blog and read Kathleen Norris as soon as possible. If I like you, I might loan you my copy.

Monday, December 31, 2018

Brain Fog

Brain fog is a general term for dysfunctions in focus, learning, 
and memory that can create brief episodes of confusion, disorientation 
and frustration. Brain fog is a source of anxiety for many patients.
--random Google quote; true, though

2018 did not go as planned.

I know, tell me something you don't already know.

I had plans. Specifically, I had blog plans. I was all ready to retire this particular blog and start a new one (I hope I have it saved somewhere because I cannot even remember the title). I was all set to post photos and poetry (not my own) to bring our far away friends and family up to date (somehow, it's become too hard to write Christmas letters anymore--too many feelings, too little rest) and then 2018 came screaming into being as the year of the adolescent girl in the house who is terribly unstable.

Everyone who has experienced adolescence with autism has warned us that it's like life is turned up to 11. And they are right. And our poor girl got my genes which means puberty = instant clinical depression. Lifelong. Just a wee bit discouraging. So we spent the winter and spring trying to rebalance Miranda with meds and counseling and additional supports at school. And we made some headway. But then summer came and all the things that were fun last summer that we planned to do again, she hated. And then September came and we needed to readjust her meds again since she'd grown several inches and ran smack into two more medical crises. Which we are still trying to recover from. If I never have to take her to another doctor's appointment, it'll be too soon.

Our poor boy's body decided not to start adolescence on it's own, so we're using medication to jump start his system and consequently waiting for his next shoe to explode.

In June, I was diagnosed with chronic Epstein Barr, which means I tend to run a low grade fever almost all of the time and thus have limited energy and wear short sleeved shirts if the temperature is above 40 degrees F. I got a lot of reading done this year because I spent so much of it flat on my back.

So here I am, at the end of 2018, trying to scrape through the constant brain fog (an actual side effect from the anti-depressant that allows me get out of bed in the morning), wondering what was the year for?

The famous Eugene Peterson quote, "A Long Obedience in the Same Direction."
One of the advantages of having classified children with IEP's is that you work with teachers and case managers who are required to keep creating new goals for your children once they've achieved the previous ones. You keep moving forward, regardless of how many tries it takes to make that next step. You keep in touch with the teachers frequently so you're all steering in the same direction.

Find Ways to Start Over
I had a particularly bad day with Miranda recently. By noon, everything had gone wrong and she was sick, again, and then threw up the antibiotic. So, I took a tranq, took a nap, and started over at 4 pm. I have to keep remembering she is not the same as I am and doesn't do things my way. I can't force her to do much anymore, so my persuasive skills and patience have to be what I reach for first.

Remember Significant Achievements
Alex started the Work Study program at Archway in the fall of 2017. They have a successful program of training kids with his kinds of abilities to work in the outside world. We were enthusiastic; he was not. For more than 6 months, it was the worst part of his week and he resisted all attempts to make it anything but personal torture. But his teachers persisted, and it slowly got better. And then it got better at home. He can (almost) clean his room without assistance. He does the trash, the recycling, the mail without complaint. His sister whines for days about taking 5 minutes to empty the dishwasher while he just carries on and gets his stuff done.

Say Goodbye to (Most) Chocolate
I am a chocoholic. I started binging on chocolate candy when Miranda would spend so much time screaming and refusing to be comforted (years 2 and 3 were pretty painful). My body doesn't tolerate alcohol very well and my current anti-depressant hates it, so a glass of wine is a difficult thing for me to swing. So dark chocolate Reeses peanut butter cups and York peppermint patties became my best friends. But when I was diagnosed with Epstein Barr, I realized the large amount of refined sugar I was eating every day was not helping my immune system. So I went through a typical 30 day withdrawal period (seriously not fun) and survived it and feel better on the other side. The holidays are difficult, as they are for many of us, but I still feel better.

Aside: I have been complaining, in recent weeks, of the overwhelming amount of sweets that are everywhere at holiday parties and celebrations. And yet, with my parents' help, we gave out several dozen plates of fudge to all the teachers, therapists, case managers and bus drivers that my children have accumulated this year. Hypocrisy much? We give fudge because it's economical to do in large piles to the large numbers of people we want to thank. And it's a family Christmas thing. Sigh. Again the classic American problem where healthy food is expensive and refined sugar treats are cheap.

Looking forward
I expect 2019 will be as complex medically as 2018 was. Thankfully, I have amassed a pile of good doctors and therapists to help us through. I am starting to rearrange my life to accommodate my decreased energy and am thankful for the many others who are picking up the slack. I am thankful for my church and the many ways I am encouraged by my involvement there. I look forward to seeing my extended family in San Diego in March as we celebrate the life of my paternal grandmother who passed earlier this month. And, if you stalk me on Goodreads, you know my TBR pile never gets smaller. Now if I can just find the time to go see Aquaman.

Friday, December 29, 2017

7 Final Takes for 2017

(Christmas picture of my family with my parents)

1. It may come as a surprise to some, but I will be retiring this blog in the New Year. Passing for Normal has served its purpose. If you read my posts in the spring, you watched me come to grips with the diagnoses of my children and my acceptance that their permanent inability to pass for normal will always cause me a portion of grief. But I've also come to accept that I will never pass for normal, so there we go. It's time to leave the past in the past and look forward. 

(And since Anne Kennedy went from An Undercurrent of Hostility to Preventing Grace, I have a process to follow. But I don't think I can quite come up to her level of snark.)

2. Adolescence in children on the spectrum is much more exciting than that in neurotypical kids. Life with Miranda this year has run the gamut from fascinating because of the real live person she's turning into to hair-pulling frustration with her inability to get emotionally unstuck (love that ODD), with plenty of tears in between. She is growing and changing, which is good, but it's painful for all of us. But we do have support from friends and family and church and school and doctors and therapists, so we are constructing a new normal for her in 2018. She'll make it and will be stronger on the other side.

3. Then there are the kids on the spectrum whose adolescence is delayed. There's Alex, with his wonderful long hair (one year into working towards the goal of a man bun), but much shorter in stature than his younger sister and much more immature. We've been watching him carefully and will be consulting an endocrinologist in the new year about HGH. He's 14 years old now and his program at school has completely switched to a vocational pathway. Archway has been so good for him these last 2 years and we trust in their process. 

4. My parents had a fun year, flitting back and forth to CA to see the other grandkids (they are very happy to have 7) and then a long vacation/pilgrimage to Italy. Dad had his second knee replacement and mom had cataract surgery on both eyes and both are well at present. 

Love those darlings. Hope to see them next year.

5. My honey changed jobs in January and while, for the first half of the year, it was an appreciated new challenge, since August it's been crazy and crazy-making. Too much work, too few staff. Still, the opportunity for him to work from home on a regular basis was good for all of us. We miss him when he's not home. 

6. I only read about 150 books this year (I think last year it was closer to 220) but that was partly because I read Nalini Singh's Psy-Changeling series 2-3 times over the summer and I don't count rereads. Fun books, but incredibly impressive world building. Other new authors I loved on first sight: Mariana Zapata, Ernest Cline, Ben Aaronovitch, and Loretta Chase. Plenty of old favorites in my reading pile; stalk me on Goodreads if you want details. 

7. I didn't see enough movies this year, but I never do. Of course we saw the necessities (Jedi, Ragnarok, Guardians 2, Wonder Woman, Dunkirk, Blade Runner 2049, Kong, F8te of the Furious, and Logan). I still want to see Justice League, Jumanji, Darkest Hour, Logan Lucky, Baby Driver, Atomic Blonde, Valerian, Get Out, Molly's Game, Spider-Man, Cars 3, and King Arthur. Eventually. 

And that's the year.

Read Anne's list; she's always good. And here's Kelly

Tuesday, August 22, 2017

Vision, or Lack Thereof, Otherwise Known as Wandering in the Desert

When I was a child, when Keith Green's "So You Wanna Go Back to Egypt" (1980) was familiar background music, I did not understand why the Israelites of Numbers 13-14 refused God's direction to leave the desert and move into the Promised Land. They saw that Canaan was full of Canaanites who would have to be moved out by force, and they were afraid.

The child I was who was reading a children's Bible full of exciting stories remembered the miracles of Exodus only a few pages previous and was puzzled and scornful of a people who forgot God's faithfulness so quickly. I must have thought, God said he would help you. Why won't you move?

Ah, the innocence and inexperience of youth. When everything seems easy, your parents know everything, and every decision is yes or no. I miss the certainty I had as a child. It helped that I rarely had to make my own decisions about the future; I just followed my parents and trusted they would take care of me. And they did. They had a Vision of where we were going and I was happy to tag along, even though, at the time, I was highly suspicious of the two younger brothers they provided me with for the journey.

My pastor at Hope Church spoke eloquently about Vision last Sunday (you can hear the message here). He defined Vision as "a picture of a future possibility that can only be realized through effort and determination, a blueprint and fuel for decision making." And as he continued to talk about what Vision is and how it influences your life, I realized, sadly, that I don't have a Vision for my life right now. All I have is the day to day existence of survival. And I feel that lack of Vision keenly.

Friday marks the one year anniversary of the death of my father-in-law. And I thought, after all these months, that I was done with my grief. (I associate this Jars of Clay song with grief since I first heard it at my cousin's funeral in 2003.) I guess I thought a year was enough time to be reconciled to the loss of a parent, but it's still there.

I am reminded of my favorite quote from Everwood, from S02E01:

"After my mom died, everybody told me I was going to be okay, that it would take a little time, but I'd heal. That didn't ever happen, not really. What you're feeling right now, ... it doesn't ever really go away, not completely. It's not like you're going to go back to being the person you were before they died. That person's gone. It's more like . . . something inside your body breaks and your body finds a way to compensate for it. Like if you busted your right hand, you figure out how to use the left one. And, sure, you might resist for a while 'cause you get pissed off that you have to learn all this stuff again that nobody else does. Eventually, your body takes over for you and figures it out because if it was up to you, you'd just . . . look at your busted hand forever and try to figure out what it was like before."

I think grief has cooperated with my constant depression to act as a blindfold that prevents me from seeing an adequate, supernatural Vision. I have been able, in this past year, to walk in the familiar footsteps. I'm still the mom of two special needs kids, the household manager, my husband's lover and confidant. I participate in the church functions already on the calendar, see my doctor, see my shrink. But I always feel weighed down. All those things that previously energized me--prayer ministry, youth ministry, Bible study--I still do, but automatically. The good news is that when you invite the Holy Spirit into your activities, he still shows up, even if only half of you is there. But you remember how it felt before, when your heart was lightened by the process of sharing God's grace with others. And the absence echoes all around you.

Perhaps I am still trying to reach backwards, to the child who saw the world as black and white and found God's commandments easy to follow (or thought she did). Or to the 21 year old bride who was delighted by the kindness of her new father-in-law. Or even to five years ago when death didn't hang over my husband's family. I had a different Vision then. The way through seemed clear. I could see the Vision. But then life shifted and I lost my sight.

But, here, now, as August is falling away and September, the time of new beginnings, is nearly here, I can almost feel the hope of change. The boy will start 8th grade, happy in his school and friends. The girl will start fifth in a new school but with old friends and the promise of new ones. The husband now understands the new job he took in January and will have to decide how to fit the rest of life around it. And I, I can ask for a new Vision. A new pathway. A new hope for this future that is now, here, in my 42nd year. Altered by grief but refusing to let sorrow have the last word. I'm tired of wandering around in the desert. I want to walk in the Promised Land.