Thursday, June 14, 2018

#100DaysToBraveSummer: Day 18 {Pray}

Today in the book we are challenged to be brave and pray, talk to God and that God is listening. After writing this post, I realize it comes across a bit negative about prayer, but I assure you its not. I'm at a good place on this subject now. Just read to the end. 😊

I don't really like to talk about prayer. It's changed for me. A lot. I know I don't think about it the same way as I did before Austin. I've learned that its not a way to get what I want, magic words repeated over and over again that will somehow convince the Big Genie In The Sky to grant me my wishes if I say them in just the right way and with just the right earnest heart. I know its not a way that God proves "he's got my back."

I do still express needs and wants, however, out of habit with just as much desire, but now with no supernatural expectations: "Please, Jesus, help me..." or "Please, Jesus, help him/her...." They are just generic phrases that really mean nothing to me except to announce to the universe what I want so I'm not holding it inside. It's not prayer. At least not to me anymore.

And I don't like participating in group or corporate prayer either. I had so much resentment towards God not "answering" when I was doing all the "right" things, that I refuse to pray that way anymore, especially not in church. I keep my eyes open. If I close them, they tear up as I listen to the list of needs and wants being announced, feeling these were just words, a list of demands, not any kind of communion. And just because the prayer ends with something like "but let your will be done", I know that was not the intent of the prayer in the first place, otherwise why even present a list? The true magic words "in Jesus name" are said in hopes of getting the results. The preacher or the congregants want something specific. The good thing, maybe, is I'm not quite as negative about corporate prayer anymore. I let it happen because that's what people seem to need. I just don't really participate. I just watch and observe wondering if that's what everyone else is doing too.

When I've had to pray out loud for someone in a small group setting or when my mom asks me to pray for her one on one. I panic at first. I know what they want from me. A prayer that requests a list for specific things to happen. And a prayer that sets up an expectation that could lead to disappointment if not fulfilled to their satisfaction.

In those circumstances, I find myself being very vague in my request during prayer and mostly saying things like "I pray for acceptance, peace and contentment" because that is one "prayer" I can pray and mean. And it's one that puts some of the burden on the requester to seek those things themselves instead of just waiting on the material miracle. It eliminates disappointment because it is achievable. At least in my mind.

I've come to find that the purpose of prayer for me is to seek oneness with God, the logos, the image I reflect, the vine I am a part of, the Christ that is with me and lives in and through me. It's to commune with His/Its essence. It's listening in the silence (hello "quiet time"). It's meditating on the stillness. It's seeking truth. It's breathing in and breathing out. It's sensing the Spirit. It's knowing. It's feeling alive. It's feeling peace. It's surrender.

Prayer to me is less about God listening and more about me listening. And that is how I pray.


Thursday, May 31, 2018

#100DaysToBraveSummer: Day 3 {You Are Braver Than You Know}

I tentatively joined a Facebook group to read this book/devotional (100 Days to Brave by Annie F. Downs) I've never heard of. I was supposed to start on Memorial Day and it goes through Labor Day, I think.

I usually avoid these kind of books because the author's picture is always a big perfect, toothy grin with perfect lipstick lips, and smooth, shiny hair with a head tilt that's just right. I don't trust them.

I don't trust them to tell me anything I don't already know, or I can't imagine they've been through anything like I've been through. They exude "I have an easy life." (I'll apologize now since I'm sure it's  not true. Everybody has something they've gone through. And an agent and/or publisher thought this person's experience was meaningful enough to publish a book about it.)

I'm always late in these book groups/studies. I get my book late. I try to catch up over several days. And then I get behind again. Eventually, I'll just shelve it along with the rest of the started-but-didn't-finish self help type books.

And with that said, even though it's technically Day 4, I am choosing to respond to Day 3 prompts today. Day 3's excerpt says "I never felt brave. But day after day, I just did the next thing, took the next step, said the next yes." And then the journal prompt says "Think back on your life. Journal about two or three moments you or someone else might label as "brave".

I laughed to myself. Two or three moments? I'm to the point where just getting up every morning is a story about being brave. So here is my journal contribution to the Facebook group this week. I don't know if this is a story of being brave, but it's definitely a story of putting one foot in front of the other and keeping on when everything in me said "I don't want to, today".

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Anxiety and sadness have been all over me this week like a thick, sticky syrup. I kept trying various tools I'd come up with that usually help, but I just couldn't escape it.

It started on Monday. I was ancy and felt my typical holiday guilt for not planning a family event for Memorial Day. No magical mom-generated memories around here. Instead I spent the day going from room to room spilling my angst onto everyone in my path.

Sometime in the afternoon, I was gazing out the back window when I noticed a weird looking bird sitting on the back wall. He had a little black plume sticking off the top of his coppery head. I'd never seen this bird before and had to google what it was.


It was a Gambel Quail. He was fascinating to watch because of that weird plume thing that kept bobbing up and down like a hypnotic watch. He kept marching up and down the wall. It was a nice distraction. I took some pictures.

Later, I tried to take a nap. I tried to read. I tried to watch TV. I sat in the backyard. Finally, my husband came out and asked if I'd seen all the little baby birds tumbling down off the wall into the backyard earlier. I said no and asked him to bring my camera so I could take a picture if I saw them. The male was still parading up and down the wall. I just didn't realize he had a family.

They were hard to find. The mother must have noticed me when I came out to the backyard earlier and had kept them pretty well hidden for a while. But after I stayed very still, I saw her venture out from behind a blue agave. Following in her foot steps were 8 chicks. They were so tiny, fluffy and cute, and the same color as the rocks; my eyes strained to see them. The way they darted and scurried after one after another, from plant to plant was so funny and terrifying at the same time. Every now and then, one would dawdle, and daddy quail would yell at it from the wall or fly down and herd it along.

I watched them for quite a while. The distraction helped push the mood into the background.


By Tuesday, I decided on a project, thinking the unfinished planning I'd done in the past couple weeks just needed to be followed through. Maybe that's what was bothering me. So I began moving Austin's day bed and equipment into the breakfast nook off the kitchen and moving all the dining room things out to the main room to be displayed where it was supposed to go in the first place according to the house design.

It was a lot of work and kept me really busy. I finally finished up Austin's part of the reorganizing project since one of Austin's nurses was arriving for her shift soon. I needed to make sure she had a place to sit in between Austin chores.

But by evening my anxiety bubbled back up.

Wednesday was the worst. I woke with dread, anxiety and sadness. The "sky-is-falling" in me convinced me this was my last day on earth. It felt ominous. I had one major job to do, and that was get Austin to and from his neurology appointment. I knew if I put one foot in front of the other, just like the project the day before, I could slog through the day and, at minimum, accomplish the task even though everything within me wanted to go hide in bed.

So I did it. The hour drive to the hospital with pesky drivers all up in my business went per usual. I found a handicap spot on the third floor of the parking garage. I adjusted to an unexpected reroute on the way to the clinic when the directory didn't show neurology in that building anymore, but alas, after walking over to the main building to find where they'd moved to, it was actually still in said first building after all.

I didn't freak out too much when the mother with the stroller took forever to exit the elevator so that it closed before I could get Austin's wheelchair across the threshold. I only spilled a little of my mood onto the intake nurse when she apparently didn't know the drill and I had to tell her what needed to be done.

I sat through the doctor's appointment answering questions about how Austin's seizure activity hasn't really changed. I was reminded about his almost total seizure control before Texas. I was given new instructions for increasing the ratio of his keto diet since it seemed to be the original controlling factor. I listened to concerns about the unexplained liver failure and why we were taking the ratio increase so slow. I agreed. The Texas experienced sucked, I'd rather not do a repeat.

I drove home into the afternoon sun and only dozed off four times on the final leg, each time jarring awake to see my car in the midst of drifting across a line or towards the construction cones. I repeatedly took deep breaths, determined to just make it home without killing me and Austin first.

I spent the evening sparring and poking with the family. Nothing I did or said and nothing they did or said felt good or soothing. It all just felt prickly.

I went outside and looked for my quail family. I snuck up and looked behind all my agave and cactus where I'd seen them hiding before. There was no dad stationed on the wall. They had moved on. It added a little to my sadness; I was hopeful for their survival, but I was sad I couldn't watch them anymore.

In fact, most of my Spring nesting birds were gone last night. My trees in the Spring are basically bird hotels with lots of loud squawking every night when the parents return to their nests. The competition for space appearing fierce, although somehow they all work it out. But now they're gone. Summer is coming, I guess.

I woke up today with a renewed sense of calm. Somehow I'd survived the past few days with hopefully as little damage to my family's psyche as possible. I'm sure the big kids will all need some kind of "my-mom-ruined-me therapy" eventually.

Oh, and I miss "my" birds.




Wednesday, May 23, 2018

The Boy {#StoryTweeting - *Childhood Book* Prompt}

This was my submission to a new thing on Twitter that I’ve been participating in once a week called #storytweeting. This week’s prompt was  “childhood book”. The stories are supposed to be non-fiction. When I think back about my childhood/teen years, I can see how much the characters in my books influenced my thoughts, actions, and expectations in life.

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As breakfast came to an end, she quickly grabbed a hot chocolate, the requisite daily devotional materials, and headed outside into the chilly, crisp air to "find a spot for her 'quiet time'", i.e. to look for the boy.

She'd seen him exit the youth camp cabin alone a few minutes before. Her junior high crush sported sandy hair, soft brown eyes, and a lop-sided grin. Popular and outgoing, yet also a hint of reservation and mystery, he was the perfect fodder for her imagination, a physical manifestation right out of her teen romance novels.

As the morning sun filtered through the trees casting hopeful rays across her path, she hurried along hoping to catch a glimpse of him.

She quickly slowed her pace and came to a stop when she spotted him near the creek. He stood on the small boulders at the creek's edge casually skipping rocks. She tucked herself into the shadow of a nearby tree.

"What could he be thinking about?" she mused, "an anticipated boy adventure? a cute girl? a disagreement with a friend?*

The next rock skipped 4 or 5 times as he stooped to pick up another one.

*Sigh* If only he was thinking about her. But she accepted she was an invisible introvert and bookworm, her looks plain except for too much eyebrows and an unruly head of dark hair that needed 21st century hair products yet to be invented.

He was still boyish enough to be a naive Henry Huggins, Tom Sawyer, or Huck Finn just planning a day full of adventure. But he was also mature enough to fit the bill as an irresistible 'Sweet Dreams' or 'Sweet Valley High' boy-next-door.

He turned slightly so that she caught the look on his face.

"Wait! Did she just glimpse deep brooding, sad expression?!" her heart fluttered with the thought.

If only she could catch his eye, and he could look into her soul, then he wouldn't be able to prevent himself from seeing past her dowdy looks and awkward social skills. He would know deep down that she was the only one that could tame his restless spirit and save him from himself.

It was so obvious. She was Jane Eyre to his Mr. Rochester. Like duh.

Thursday, March 22, 2018

I Have Something To Say

I want to tell y’all something. It’s important because it was life saving for me (like now I don't lie in bed everyday and think about all the ways to leave this earth), and I want to be able to mention and talk about it here in this space. Perhaps it might help someone else who might be feeling stuck within the confines of solutions that have been suggested to them so far (but aren't working).

I am mostly at peace. I say "mostly" because, duh, I'm human and humans are reactive, emotional, and thought-ridden. But if I'm not at peace, I know how to get back to it. I know how to work on it and towards it. I feel I'm finally aware of what "born again" means. A glimpse, an opening, a doorway, a breath, a release, surrender. Things in my life have not necessarily changed, but my perception has.

In the spring of 2016 (as best I can tell based on my blog posts, i.e. Fighting For Peace) while I was still struggling (and praying and begging God for help) to overcome the effects of my grief (overwhelming disappointment, depression, anger, rebellion) due to my “life situation” (caring for a medically complex child, unrealized expectations), my "you know I'm almost 80 years old" aunt (as she refers to herself), with whom I had recently reconnected, asked if I had read “The Power of Now” by Eckart Tolle.

So I read it (listened to it) which led to my reading (listening to) his second book “A New Earth” (which led to me listening to and reading them repeatedly over the last two years plus his selection books "Oneness With All Life" and "Stillness Speaks".)

Now I know what some of my Christian friends and family may be thinking, “Holy cow, the girl is reading and listening to new age heresy!” which is why I've been reluctant to talk about this outright before now. Don't worry, I haven't denounced "the faith", however, why should I keep a secret part of the reason I'm able to live again?

Obviously I read the books through the lens of Christianity. I mean, I've been a "born again" Christian since childhood, heard the teaching twice on Sunday and once on Wednesdays from the time I was born until I left for college. And even in college and beyond, I've done a pretty good job at making it to "Bible" studies and Sunday morning services, including serving in all the various capacities church membership entails.

But over the years, and specifically since Austin (and researching his brain, how fragile a brain is, how brains work, how it can change, the chemicals, structures, thoughts), I’ve experienced doubt and questions about some of what I’d been taught about God and the Bible. Yep. You heard me. I don't have child-like faith. This has led me to take Christian author's interpretations and Sunday morning sermons with a grain of salt, always filtering and searching for the nugget of actual truth.

So for me, it’s easy to read secular books in the same way - in fact, I feel like I've always read secular books that way. I filter and search for the nuggets of truth no matter what the genre, and I take in everything with a grain of salt. Because if there's One God, One Divinity, (shall I dare to go so far to say, One Consciousness?), then there is one Truth. And won't It (whatever It is) reveal itself within me no matter the source? For aren't we all created in One Image? If we seek, will we not find? Won't the rocks cry out? Hasn't God/Truth been revealed to us since the beginning through creation? The Word spoken and manifested? I could go on...

And so I've been open to consider everything that comes my way. Especially "accidental or coincidental" things that enter my path that I was not actively searching for or seeking (besides searching and seeking the Truth.) And I don't have to fear anything that comes my way because the One Spirit is not a spirit of fear.

Which brings me back to my aunt and those books I mentioned above. While I wouldn't say they paint the whole picture of how I overcame my funk (there were many other factors including blogging, other books, counseling, husband, kids), I would definitely say both my aunt and the ideas in the books played an extremely large part (as in a profound turning point) and still do.

So I wonder: Why couldn't I get this same result with my Christian background and all the knowledge that entailed? Why couldn't I find peace? Why was I drawn to reconnect with this family member who became my therapist, my confidant, my best friend? Why was I able to be open with her and how did she have the capacity to give me space, to listen without giving advice? Why did it take the way that author phrases things for me to finally begin to heal, "to see the light"? Why did it take this particular perspective and vocabulary? Why...?

Well...I have ideas. But they are just ideas. So I'll just leave you wondering, too.   :)

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But wait, I have something else to say: I love you Aunt Barbara! Thank you for opening your heart to me. Thank you for your unconditional love. I bequeath unto you all the heart emojis: 💛💛💛...

Thursday, February 15, 2018

Random Questions Regarding the Value of Life as Related to School Shootings and Mental Illness

My thoughts are in a jumble, but there's lots going on that’s taking up space in my head. Sometimes clarity comes with writing. But not always. So fair warning. It's pretty incoherent and without a conclusion...

Yesterday there was another school shooting.

Yesterday there were calls again for politicians, government, anyone to "do something, don't just pray, don't just talk, take action...create more laws, fix mental illness, make it stop."

Yesterday there were the usual debates between those desiring government intervention in hopes of eliminating mass murder and those pointing out how we allow "mass" murder everyday in the form of abortions (and even euthanasia) followed by the usual "don't change the subject" admonition from the "more gun control" side.

Yesterday someone pointed out that this is NOT changing the subject if you are looking at the big picture, that if life isn't valued when it starts or when it is ending, then why should we expect life to be valued anywhere in between?

Yesterday these conversations reminded me that legislating any of these issues, whether gun control or abortion, is just a band-aid. We can legislate all day long, but some people will still find a way to express their hurt by hurting other people, some people will still find a way to eliminate an inconvenience or to prevent or end a perceived suffering. They will find a way to live out their egoic selfish natures, to put their wants, desires, hurts, opinions, beliefs first. Some people will still value their own life, their selfish desire for revenge, or their dogmatic adherence to what they believe is a superior belief system over someone else's life.

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Yesterday I sat in a meeting with family members, a case worker, and a doctor. Our purpose was to determine the next steps on behalf of another family member who is currently hospitalized because they are refusing to eat. 

Yesterday we had to decide whether or not we could or should intervene if this person continued down their path of starving themselves. 

This person has adamantly and verbally expressed, as well as recorded in a written directive, that they do not want any interventions, specifically in the form of a feeding tube. 

This person has attempted suicide multiple times in their past. This person has tried every drug known related to depression and/or anxiety with no permanent relief. 

This person has undergone ECT shock treatments with temporary positive outcomes. This person's last experience with ECT went very wrong and they came out of anesthesia too early causing severe psychological trauma, anxiety, and recurring nightmares. This person refuses to use ECT again as a possible remedy. 

This person has suffered from a lifetime of anxiety and depression. This person has been suffering physically from severe tremors for the past couple years that were possibly induced or triggered from all of the culmination of drugs they have tried for treatment. This person suffers from extreme anxiety and doesn't feel safe unless in bed in a dark room. This person states they feel empty inside. This person is unhappy, miserable, and is passively-aggresively committing suicide using the only method they know they can control. This person does NOT appear to value their life anymore.

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What if we are able to cure or medicate mental illness away? What if we are actually able to legislate mass shootings and abortions out of existence? What if the government is able to forcibly bend people's will so that they can't give in to their egoic selves. Is this possible? Can legislation overcome humanity's bent towards putting one's self ahead of another? Will we all live safe and happy and value life then? How do we get people to see the bigger picture of how our lives are connected? How do we get people to want to sacrifice their own desires for someone else?

What if our family member's body finally succumbs to the act of starvation and starts to shutdown? What if this person can't resist intervention anymore? What if we can force our family member to eat at that point by deciding they will have a feeding tube? What if we insist that they keep on living no matter how they feel or appear to be suffering? Will that family member value their life then? Can we value their life for them? Do they need to participate in some way, show some sign that they want to live?

Can valuing life come from an external entity to be forced upon someone? Can we force people to see and know that we are all part of one Life, one Light, one Being, one Body? That by killing another we are killing ourselves? That by not valuing other's lives we can't value our own life? How can people become aware? Can it come through "doing something"? Can it come through politicians? Can it come through legislation?

Or does it have to come from within? And if so, how?


Thursday, February 8, 2018

A Hero's Tale by Michael Patrick HagEstad

A Hero’s Tale


Before I lay my head to sleep
Before I pray my soul to keep
     Tell me a Hero’s Tale

Tell me a story I may recall well
So I may my grandchildren tell
Speak of a man daring and true
Doing great deeds for me and you
Who does not need great powers or luck
Who relies on his skill in the times he is stuck
Sing of a warrior who lives by his creed
Who has great honor and takes care of his steed
Hold him up for the generations to see
How they should live and what they should be
Do this now as the sun sets low
As the campfire crackles and the embers glow
The time for heroes may have come and gone
But there is time yet for a ballad or song

     So tell me a Hero’s Tale
For this time is brief and we must regale
Our values and virtues through a Hero’s Tale


-Michael Patrick HagEstad

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Three days after Michael left for his second semester as a freshman college student, I found this hand written poem on a piece of yellow tablet paper sitting on top of papers that were scattered on our work desk, no heads up, no "hey, I wrote something, did you read it?" 

So after I noticed it, I asked him when he wrote it, and he said he couldn't sleep the night before leaving, and since he'd been mulling these words around for a while, he decided at 3:00 am to just write them down. So of course, I asked him if I can publish it on my blog, and he, of course, says "do what you have to do, mom". 

Wednesday, January 17, 2018

What Is A Special-Needs Mom's Purpose In Life?

Last night I had the privilege of having dinner with another special-needs mom. I met this mom briefly in passing maybe a couple years ago when her son's therapy appointment was scheduled after my son's. The therapist, turned friend, introduced us, and I'm sure I smiled, nodded and politely said 'hi' in my hurry to leave. But let's face it, usually when I'm introduced to another mom there, I don't internalize the meeting because I just don't have time for strangers in my head or heart these days. And besides that, most of this therapist's clients fly in and out from around the country (or world) as we once did, and I was sure I would never see this other mom again.

Well this therapist/friend must have mentioned my blog to this mom as I know she had done time to time with other clients. I'm flattered that she does this and so grateful because it might be theraputic to unload your thoughts on "paper", but it's a whole nother level of therapy to have your thoughts acknowledged and appreciated by others*. 

Because of my blog and Facebook posts, I got to know this mom a little here and there through her comments on those posts as well as private messaging on and off. However, over dinner, I came to find out last night she might be my number one fan, that she reads just about everything I write in my blog and on Austin's Facebook page, and that because of that she had shed tears during our trauma with Austin last year being caught up in our story and experiencing it right along with us. It was humbling to think a "stranger" could be so attached to Austin and me in that way.

But its not surprising, I guess. At least not with the many opportunities we have to share our stories on the internet and in so many formats. I've been caught up in other mom's stories and their kid's lives whether I've communicated with them or not, inspired by those mom's determination and dedication, amazed at their kid's incremental accomplishments, mourning over setbacks, occasionally jealous over those mom's seeming ability to do this better than me, and shedding my own tears if their kid's life ended too soon.

And I think that's why this mom and I could meet up and go to dinner together last night as if we'd know each other forever. When we connect with someone who is going down a similar path, we speak their language and we both "get it". And to have unspoken permission to discuss openly our individual trials and grievances and confess our fears to someone who "gets it" can be like hitting a reset button. It reinforces the fact that we aren't alone, and we have a chance to remind each other what our purpose in life is right now, at this moment, in this life situation. We have a fleeting momentary mission that has been laid at our feet, that we don't have to feel trapped (as I've felt in the past), that we have a choice whether or not to accept and surrender to that purpose.

And that purpose is not to be their doctor, to diagnose causes or to medically explain this or that although we will continue to seek out the best and brightest just in case something is missed. That purpose is not to be their nurse or caregiver, to feed and diaper, to administer meds and clean their spaces and equipment although we will continue to fight for the most helpful equipment and the best medications that might ease their conditions. That purpose is not to be their therapist, to teach and train these frail frustrating little bodies to accomplish the smallest tasks even though we will exhaust ourselves researching and trying every new intervention and therapy that comes along, some beneficial and some not. That purpose is not to start a foundation on behalf of our kid's rare disease or diagnosis, or to sponsor events to raise awareness. That purpose is not to host a Facebook group to connect other special-need's mom's, or to start a blog or write a blog post that might help other mom's not feel alone. These can all be good and noble things that we do and can certainly keep us busy and distracted, but they are not our purpose.

Our purpose and mission in life is one we have in common with all moms, not just the special-needs kind. Our purpose, if we so choose, is to accept and surrender to this gift in front of us, to attempt to make a difference in this one life, this one soul, to make sure this one light feels divine, unconditional love. Right now, in this moment. 

That's our purpose. That's our mission.

(Thank you, friend, for helping remind me of this last night! And don't be surprised if my next couple of blog posts aren't inspired by some of our discussion. Your acknowledgement that I seem somewhat at peace at this point on the journey has me analyzing how exactly did I finally get to this point of acceptance and surrender. And while I'll reserve the right to leave room just in case that changes (nothing is stagnant), it might be nice to document some of the things that helped me along the way, in case it can help someone else.)


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*I feel so lucky to live in this day and age of social media when you can hit "publish" and have our thoughts read and shared within minutes or hours. I think of the "good ole' days" when we might write in our diary or journal and its not until we're dead that someone accidentally discovers our thoughts on life situations or our stories. These days we have a chance to share those thoughts and stories with the world at our leisure for better or worse, hopefully for better, I suppose. So remember, Sharing Is Caring!