I Have A Story; I Have A Secret

Austin is finally trialing an eye gaze system thanks to his OT and SLP at school. We have the gadget for a month. 

When they first hooked it up, they were demonstrating how it worked for me. They calibrated his eyes and then put it on a page for ‘places to go’. 

He almost immediately zoned in on the ‘house’ icon and kept staring at it so that it kept saying [I want to go] “home home home home home home….” We were like, no not going home yet, buddy! Ha ha ha.

But after I left and was sitting at work, I realized that the house icon looks kind of similar to the Blues Clues house at the beginning of the show! As you know Blue’s Clues is one of the only 3 shows he likes to watch, and probably his favorite. 

So I think he thought that tiny house icon was his Blue’s Clues show and was staring at it waiting for it to play! 

The size of icon didn’t matter because sometimes at home he touches the iPad enough to make the app small in the corner. So he is used to trying to find it, and he will watch it even if small! 

I’m just impressed how quickly out of all those screen of icons, he zoned in on “his “show”. He’s pretty smart when he wants to be, if that’s what he was doing! 

*I’ve included video below of when I first hooked it up at home today. He was all over  the place.

Then there was a long pause as I listened from the next room. 

Then he ‘said’ something like, “I have a story. It’s a secret.” 

So true, buddy. So true. 

Can’t wait to hear it!

Rebranding His Story

As we get closer to Austin’s 12th birthday, I felt the urge to change the name of Austin’s Facebook page to better reflect his story. I feel like we aren’t in the more desperate phase of “Praying for…” anymore. (I mean, prayers are always accepted, needed even, obviously.) 

I mean I heard myself accidentally say out loud to my husband the other day (more or less), “I finally feel like Austin is going to be here a while so I bought him his own puke rags with name labels!” So, yeah, it landed just like you think it did. 😂

I realize how weird it sounds and like I’m an awful mom, like I haven’t loved him fully. 

But being told Austin wasn’t going to be compatible with life and that he wouldn’t  or shouldn’t survive, I guess I’ve existed on the brink of constant anticipation of loss for years. And, for me that translated into building a wall around my heart and mourning early and often so maybe it won’t hurt as much if such a loss actually occurred. 

Well, I guess with almost 12 years of surviving, Austin has ‘maybe’ convinced me that I can chip away at my wall a little and perhaps stop mourning his loss while he’s literally alive and lying next to me. ❤️

I mean, when you think about it, he’s really just been such a trooper all these years; choosing life over and over again even when things seemed dire. So there’s no reason at this point to expect anything different from him. He’s going to fight to live. That’s just who he is. 💪

So that’s why for now, I’ve changed his Facebook page name to Austin Chase: A Choosing Life Story.

Let’s all sit with it and see how it feels. ☺️

On Brain Hemispheres, the Corpus Collosum, and Consciousness

This is for my science-y peeps who probably roll their eyes every time I mention crying. Well, read on my logical, reasoning, questioning, Spock-ish friends! No crying today.

I’m just always curious and never satisfied with what I know. I feel like there’s always something more. 

So ever since finding out about Austin’s Dandy Walker brain malformation, I’ve been interested in all things brains. Some of Austin's most interesting brain descriptions include the following:

• Dandy-Walker malformation with large posterior fossa cyst
• Macrocephaly
• Hydrocephalus
• Agenisis of cerebellar vermis
• Agenesis of the corpus callosum
• Severe brainstem hypoplasia
• Mild cerebellar hypoplasia-left greater than right
• Large multiseptated supratentorial cyst
• Decreased supratentorial normal gray matter structures
• Gyral abnormalities with heterotopic gray matter in bilater cerebral hemispheres

Well, this morning I was reading some super cool stuff about right and left brain hemispheres and how it's possible each hemisphere might have its own consciousness and reality, but because the left typically has speech, it might be the only side we "hear", while the right side might not be acknowledged because it is essentially "silent". 

And between our hemispheres are fibers called the Corpus Callosum. It's the part that connects the two sides of the brains and sends info back and forth. These fibers existing between our brain hemispheres might also be the reason we perceive a complete unified identity rather than two separate identities. 

However, Austin has the above listed 'agenisis of the corpus callosum' which means his fibers are absent or diminished. 

So do you can see how this gets interesting? Does he have two personalities? Does he have two consciousnesses? Can he switch between them based on which side of his body is receiving input or stimuli? 

I don't know! But what if?

So if you want to play along, read the attached excerpts from the book I’m reading on my kindle, Waking Up by Sam Harris (he's a neuroscientist and philosopher) and tell me what you think! 💫🤔🧠🧐

The Lightness and Love of Living Again

The neighborhood is buzzing with chainsaws as folks cut up and remove tree-victims of last night's storm. She gives a cursory glance out the front and back doors. She doesn't see any downed trees of her own, only patio furniture tossed around the yard and at the bottom of the pool. A Texas Sage shrub is holding a chair in its branches.

She feels some relief that she can put off the yard clean up, sit down, read, drink coffee, and write, while waiting for Austin to declare he's ready to be up.

About a month ago she told you about a downward spiral she felt her moods and thoughts were heading, and what she was going to do about it. 

So she did it. She re-read some books. She listened to the podcasts that resonated with her the most. She immersed herself in where she found salvation before.

And now she can feel the lightness and love of living again. 

She knows she can be free of the mental suffering brought on by her habit of reliving past stories or creating future stories as long as she can remember to bring awareness to the present moment. The past holds stories that don't exist anymore and the future holds stories that will never exist as she imagines. The only thing that truly exists is this present moment, what Tolle calls the "Now." 

But knowing and doing are two different things.

(And speaking of this Now present moment, Austin is howling about being aware of not being asleep anymore....)

ON WRITING ABOUT DOWNWARD SPIRALS

Last week her aunt texted and mentioned that she (her aunt) had read her blog post. She asked her aunt which one because it had been awhile since she had posted, and her aunt said the last one, and she said, oh, she thought she (her aunt) had read it already, and her aunt said, "No. I have read similar, but not that one, I don’t think...." 

And that jarred her. Like stop dead in her tracks kind of jarring. Her aunt's comment woke her to the realization that she needs/wants to be done writing about her downward spirals. Done with complaining about her life situation. Done with the public wallowing. She's been there done that. Over and over. She just needs to be done.

So she has decided she'd like to write about more positive things. Like the recent times she recognized the downward spiraling thoughts and feelings, but instead of wallowing in them for days on end, she acknowledged their appearance and then watched them go on their way. She overcame them by not making them her identity. She wasn't the victim. She was the hero. 

THE ONE THING (AGAIN)

A couple nights ago, she was home alone while her husband was working late. Austin did the One Thing: his coughing and choking and puking thing. As she stood over him to suction and clean up, she could hear and feel her typical thoughts and emotions rising. 

But then all of a sudden, she felt in her inmost being, "Oh, this is when you usually start getting really upset. You think about all the other times this has happened, how gross it is, how unfair it is that it happens to Austin and also to you, how much you hate it, how other people don't have to deal with this, how this will never end, how you will potentially be doing this clean up for years to come, how you will have to do this into your old age when you will be frail and possibly physically in pain, how if you die someone else will be burdened by this, etc., etc...", and then her inmost being said, "But look, you know you don't have to go through those mental gymnastics. None of those things are happening right now. Your mind is creating the suffering you imagine. The only thing that needs to happen right now is the action of cleaning up, the emotion of loving Austin's inmost being, the feeling of compassion as you get the privilege of helping him when he cannot help himself. 

The only thing that needs to happen is staying present in this moment and to do what needs to be done."

So, that's what she did. And the stress and anxiety, the suffering, vanished. She cleaned him up. She cleaned his bed up. When a thought regarding the past or future tried to interrupt, she took a breath in and out, watching the action from inside herself as the breath passed over her throat and out her nostrils. And she continued helping Austin. This is the practice she has been learning. And for this one little time, she did it. And if she can do it once, she can do it again. This is why she says she is done spiraling. 

She can only hope. She can only practice. And as they say, practice makes perfect.

**********

Just curious, when you feel yourself being taken over by a downward spiral, do you have a practice or something you do to wake yourself out of the trance of those negative thoughts and emotions?

**********

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of its own." Matthew 6:34

"As soon as you honor the present moment, all unhappiness and struggle dissolve, and life begins to flow with joy and ease. When you act out the present-moment awareness, whatever you do becomes imbued with a sense of quality, care, and love – even the most simple action." Eckart Tolle

"By changing what you cling to in the present, you can alter the future." Jordan B. Peterson

 

The Biggest Small Thing

She’d secretly been in a downward spiral again. Sadness; depression; grief. The old ”friends”, just coming and going, here and there. Mainly when she was alone.

Apparently she’d been hiding it well enough since her husband exclaimed, “I thought things have been going so well! You seem happy”, when she finally confessed her moods to him. (Telling the truth to her husband as soon as she becomes aware of her negative feelings is her new thing. He just may not know it yet.)

Yes, well. She’s worked on hiding these moods for years, mainly without success, but with work, getting better at it over time (she imagines this is true, anyway). But privately she’d been letting small things set her off again; which were giving rise to discontent; allowing envy to escalate.

She’s risen out of this cycle before (i.e. the work), but until she admits she is even ‘there’, she won’t take the steps to course correct. Plus she didn’t want to have to admit anything was wrong! She’s happy! She’s good! She’s accepted! She’s surrendered!

ON DISCONTENT

But then there’s the biggest small thing. The gagging. The coughing/sneezing. And finally, the exclamation point…PUKING. Austin’s attempt to manage his secretions has been the biggest thorn in HER side since his birth. Out of all the things his body does and doesn’t do according to the “compatible-with-life” manual, this is the one thing that really, REALLY goads her. 

The ONE thing. 

The one thing she’s asked God for. Begged for. Pleaded for. Raged for. The one thing that seems to hold her family back the most when trying to live their lives like regular people. 

The puke-possibility always has her on edge. Whether she can be diagnosed with PTSD or not, she can certainly identify with something like that. The potential puking has to be planned for, antipated, and expected. And if he’s sitting up for too long, it’s almost a g*d d*mn guarantee.

This is why (in case you’ve ever noticed) she doesn’t take him on very many outings besides doctors, school, and rarely more now, church. She cannot emotionally tolerate people staring at them, judging them, or pitying them. 

Other people don’t know the circumstances of why, out of the blue, he just starts gagging, coughing, scream-sneezing, and puking all over himself, herself, his wheelchair, and most likely the floor next to their family trying to have a nice sit-down dinner.  

So she decided long ago, she’s not putting herself in the position of apologizing and trying to make people feel comfortable anymore. 

She’s tired. 

Do you here that universe?! SHE’S TIRED!

She’s tired of explaining. She’s tired of trying to hide her true feelings during his dramatic/traumatic attempts to breathe. And she’s tired of pretending to stay calm and pleasant for all the onlookers when inside she just wants scream, flail, and throw a two-year old’s fit. 

She’s just as grossed out and dismayed as everyone else. She, too, finds it disgusting. But instead of reacting how she feels inside, she has to stay calm for Austin, as well as assure everyone around them that it’s ok, it’s normal, it’s just his condition, blah, blah, blah. And she’s even smile while doing it! Ugh. 

ON ENVY

So when she hears about families, your family, jumping into the car for a fun outing together across town for the day, or taking a trip to somewhere new that maybe involves an airplane, or even the mundane “put the kids in the car” and go to the grocery store, she’s envious of your freedom; and then she’s discontented

with her ‘chains’. 

Cue negative-feeling spiral. Hello darkness, my old friend….

ON AWARENESS 

But now! Now she’s aware and has admitted there’s a problem! Which means now she needs to do the work. Back to the basics. Rediscover her salvation.

Looking back to the first time she climbed out of this hole, she feels like she was rescued from despair through three authors. It was a progression of revelation. Each building on the next. 

She had first turned to CS Lewis: Mere Christianity, The Great Divorce, Surprised By Joy, A Grief Observed, and finally The Problem of Pain.

Of course she was looking to find her hope in Christianity. It was her upbringing, her lens through which all things are filtered. So she figured she’d find answers from an author who is touted as the religion’s greatest apologist. She listened to several of his books, checked out through her library app, a few several times, trying to grasp the truth he seemed so confident in. She found she resonated most with The Problem Of Pain.

Hiking at this time in her life while Austin was in school became her meditation and also something to do while listening to her books. So you know how you remember explicit details of where you were and what you were doing when a shift happens in your world? 

Well it was after hiking the North Mountain Trail in Phoenix, and while sticky and sweaty, sitting on a cold concrete bench in the shade of a picnic shelter at the North Mountain Park that her aunt, on the phone, asked her if she’d ever heard of Eckart Tolle. 

She had not. But within days she had downloaded and listened to The Power of Now, plus any other digital recordings of his she could find and checkout through the library. That’s when she came across A New Earth, and later, his synopsis Stillness Speaks. 

Her shift in perspective had begun at this point. She felt she was finally being given practical tools she could apply to help herself out of her funk. 

After her emersion into everything Tolle, this was about the time her son mentioned something about Jordan B. Peterson. And as a mom who loves to read what her kids are reading hoping to get insights into their innermost psyche, she downloaded 12 Rules For Life. It was good stuff. Wake you out of your trance that life should be easy kind of stuff.

So after listening to the audio book, she searched out more if his work which led her to his podcasts, and specifically his 15-Part Lecture series on The Psychological Significance of the Biblical Stories. She found herself resonating so much to these lectures, that she’d notice she was audibly “mmm hmm-ing” and “yes-ing” and smiling along with his observations and presentation of Biblical stories she had grown numb to. It felt miraculous.

She was finally feeling alive again! Hopeful! She had so many tools and new perspectives at the touch of a play button, and now these perspectives were being added to her mind, and hopefully, creeping into her being where it might someday become a part of her! She felt so good.

ON THE BIBLE

But why not just turn to the Bible straight out of the box, you ask?

Well, she grew up with it. The words from memorization were ingrained in her. But having heard the words, their rhythm, so much, she just couldn’t hear the essence of its truth anymore. She’d get caught up in the minutia of the stories, weighing “truth” against whether or not they were literally true so much that she couldn’t hear or perceive the big picture and actual “truth” anymore.

Lewis, Tolle, and Peterson gave her back this big picture through fresh lenses.

Lewis taught her life is hard for everyone. Just experiences differ. And it’s OK to question God. 

Tolle taught her life is hard, but there’s an essence of being/awareness within us that can accept and surrender to life circumstances and essentially end the perceived suffering in the moment, and with practice, perhaps ongoing and forever.

Peterson taught her life is hard, we have to accept that, but hope and joy can be found in the pursuit of the highest good/what people might refer to as God . One conscious choice/one little step at a time. 

So the big picture for her is there will ALWAYS be hardship, pain and suffering. But that’s ok when we learn how to put it in perspective. It does not have to be experienced as suffering. It’s our emotions and the body’s physical reaction to thoughts that seem to determine whether what we experience is labeled good or bad. If we can just observe the emotions and thoughts and not identify with them, the experience can dissipate into a neutral label. 

Similar to how often just getting perspective based on time passing and distance from a hard experience allows many people to change their label of that experience. Looking back at something hard that you went through and survived often gives rise to a feeling of accomplishment and satisfaction rather than despair and grief even though at the the time, you thought you’d never survive and endure it. We are usually stronger than we think we will be. 

So it’s our emotional and physical reactions that determine whether we cower or overcome; rage or rejoice; become the villain or the hero.

And she so wants to be the HERO of her story. 

So she’s returning to her basics. (Maybe not for the last time.) But she’s confident that the found truths that brought her back to life in the past will rescue her once again. God willing.

On Working and Self-Expectations

She thought she’d “write” a little “something, something” while driving to work. 

Oh yes. She works now. She officially started back in the fall when a few stars collided. It’s been about seven months or so now.

And surprise, she actually enjoys it. She feels useful. She never thought she’d work outside the house while, well….you know…Austin. 

Although, maybe it’s not a real job. She works for her husband. She has the freedom to adjust her schedule to Austin’s schedule. So yes, it feels like she might be cheating a little. 

But she gets to drop off Austin at school, go across the street, and do things that aren’t Austin. Real grownup things like billing and bookkeeping type things. 

Working also has the added benefit of leaving little time to think about all the existential things, which means little time to obsess and mull, and little time to write down those thoughts. 

So today she’s giving talking to her phone while driving a try. “Writing”.

The current thought-problem is that she has a friend who is mom to an  “Austin”, and this friend is struggling at the moment. The friend is trying to do all the things; a people-pleaser like herself. 

But what it really comes down to, in her opinion, is they are both SELF-pleasers. They have expectations of themselves that if they don’t meet their goals, they disappoint THEMSELVES. 

Then, as an added bonus, they project these self-expectations on to other people as if it’s other people’s expectations too, when other people are probably just trying to get a read on what these moms want from them; how they want them to react; how much they want them to be involved. (And then these mom’s would, in turn, project that other people want to be involved as little as possible; so these moms will work hard to make it seem like they have it all under control; even if they don’t.)

For whatever reason, special-needs moms (or medically-complex moms - whatever they decide to call themselves) think they need to do it all; try all the therapies; see all the specialists; explore all possible answers. They feel like the world expects it of them, and they expect it of themselves. Noble goals until they realize most of the things are unattainable or make very little difference.

So this friend claims her primary goal now is quality of life, a happy kid; admittedly exhausted trying to do all the “above and beyond” things. 

(Same here, friend, same…she thinks to herself).

So she suggested that her friend keep repeating this goal to herself and to everyone else. Make them hear it. If the world believes it, maybe the friend can too.

But what about herself? Can she take her own advice?

She’s put a lot of expectations on herself for this job, including goals to also keep doing what she had been doing with Austin. But, the expectations are obviously too high because she falls apart at the drop of a hat when there’s nothing to fall apart over; she feels exhaustion and physical pain trying to do more than she probably should be doing. She admits it. She’s TIRED.

THEY are tired, her and her friend. They need permission to lower their expectations of themselves, and they need to learn to manage other people’s expectations.

Because they have lofty goals.

Quality of life; a happy kid. 

Septic Tanks

Anxiety induced tears washed over her along with the water from the shower head, both flooding her face. She sobbed silently at the shower tile, letting the hot water flow down her body taking the unwanted emotion with it. Down, down. Washing it down; into the drain; into the hidden depths where it belonged.

As a child and somewhat into young adulthood, she endured excruciating shyness and anxiety over being around others, but at the same time she wanted to be around others. This anxiety made her feel like she was always on the fringe of groups, never a member of the group; she was only invited bc she was friends with someone who was invited. 

Her shyness and anxiety forced her to keep to herself mostly, finding friendships in books and music, avoiding looking people in the eye. She watched other girls; tried to emulate what she thought others liked about them; attempted to be what she thought others might want her to be; fighting against thoughts in her head and her own instincts.

But there was just something about her that seemed to keep her from being chosen. The younger years of childhood were spent thinking it was her looks that kept people at bay. She felt quite ugly growing up. In her 4th grade school photo, she thought she looked like her Uncle Billy. Which would be fine if she were a boy. (She had thought at the time he was pretty good-looking. She may have even had a childhood crush on the youngest of her uncles). However, girl-uncle Billy was not very appealing to her.

However, as she grew into her teens and especially young adulthood, she recognized she had a personality quirk; she was a melancholic, introvert. 

“Who should we call to hang out with? Oh I know! That super sad, shy girl. She’ll be fun!” 

She just wanted to be fun; to be liked; to be wanted. She yearned to be part of a group. And while she was lucky to usually have a best friend that tolerated her, she wanted best friend-s. A group that wanted her even if her best friend wasn’t there. She envied those who had the natural gift to attract a group.

(Now looking back from a 50+ years, middle aged perspective, she can see periods of her life where she WAS  part of a group, maybe not necessarily just a plus one.)

But today she is a child again feeling the old feelings. The sense of wanting what might not be had. She thought she’d outgrown all that. She thought she had hardened her heart and convinced herself that she doesn’t need a group anymore; she doesn’t need a best friend even. She has her husband. She has her kids. She has her extended family. It is enough.

Until…she puts herself out there and invites a couple of old friends to meet up. She also has plans to meet up with coworkers she is just getting to know as peers instead of the bosses wife. It is too much for a sad, introvert. 

Thank goodness for septic tanks.

On Writing (Again)

I published 8 posts on my blog last year. Eight. Fifteen the year before. I probably shouldn’t even call myself a writer. I’ve actually wondered if my phase of writing was just a phase.

I’m reading a book that is self-titled as micro-memoirs; seemingly random unrelated memories that make me feel something at the end of each one. I like it.

Memoir sounds most like my genre. But MICRO-memoir sounds more doable right now. Therefore:

I will write micro-memoirs.

So be it. I have put it out into the ether; into the universe; even prayed it out loud: I want to start writing again. I find joy in writing and publishing. I WILL write micro-memoirs.

One caveat. I need your help to remember to remember to write about what I remember. 🙂