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.

Sunday, June 11, 2017

7 Reasons Why I Haven't Been Blogging

So the last two weeks have been rather quiet around here, for a number of reasons. Let me innumerate them:

1. Both kids got the stomach flu, but not at the same time. Miranda had it last week and Alex had it this week. So by the time I got her all cleaned up and healthy, I had a headache for two days and then he got sick. However, I am happy to say he does vomit in the toilet now. Big improvement. She was not to skilled. She has a loft bed so when she got sick, she just leaned over and covered the floor, and then went back to sleep. Not a drop on her. I, however, discovered that gravity is not your friend when cleaning up slop. It creates a rather impressive splatter pattern.

2. My doctor changed my anti-depressant cocktail. I've been having pretty serious nausea from my meds and we tried one variation last month that didn't improve matters, so last week we tried something else. If you've taken SSRI's, you know that you should pretty much give up on a regular sleep schedule for at least two weeks. Caffeine and naps help, a little. You mostly just wait it out.

3. Since I've been mostly brainless for two weeks with sick kids and an unsteady neurological system, I've read 11 books, mostly by Nalini Singh. I am definitely enjoying her Psy-Changeling series, which is part of the para-normal romance genre. Her world building skills are excellent and I like most of her main characters. A couple of them haven't worked as well, but no one can write the perfect novel, year after year after year. I'm now in the middle of book 12.

4. End of the school year! Alex's last day is this Wednesday and Miranda has 7 more school days. I did manage to get Alex's teacher gifts delivered last Friday (more fudge, like at Christmas, because it's just easier to do in bulk; Alex's "teachers" number 12 people). I'm not sure I'll have enough fudge in this batch to finish up Miranda's people because she is leaving behind her elementary school and moving on to the Intermediate School next year so I might need to make more this week for extra people we don't usually honor.

5. My parents are on pilgrimage in Italy. I'm so glad they are able to take this trip but it makes life a little more complicated here at home. Thankfully, Mimi the Great is still here and one of our favorite babysitters is back from college for the summer.

6. My aunt and uncle from San Diego were here visiting this week and we were able to share two evenings with them. We haven't been able to travel to see them recently so it was nice to catch up.

7. The words just aren't flowing as easily as before. I wrote the first ten blog posts in minutes with very little revising and so I've probably picked all the easy topics and it's going to get a little more challenging moving forward. Or I have lots of memory gaps; 2007 is pretty hazy for me. But I hope to get back to it when things slow down again around here. In a week or so.

Here's Kelly.