Mantra for Moms: This is my life. It's an adventure. At least I'm not bored. (Repeat)

Last night I had the privilege of listening to a friend vent about this sometimes super, stressful life we live as moms of medically complex kids. I told them to lay it on me. 

But since we weren't face to face, but texting, I felt like I needed them to know I was actually paying attention and not just letting them type away while I was watching "Housewives" or something.

I could have posted emoji faces to try to convey my attentiveness, but I felt like sometimes that comes across like a mom saying, "mmm, hmmm" to her child when she's actually distracted by Ramona yelling, "Wow, Bethany, just wow!" (Which, by the way, this has become a standard response in my house whenever my husband or I become exasperated with one another. LOL.)

So instead, I tried to convey my listening verbally, but without trying to come across as giving advice (which is really hard!) because really once you have a chance to lay all your cards on the table, you'll know what card to play next. No one needs to tell you.

So I said things like (and now that I'm re-reading, they totally sound like advice, ugh - shut up Rachel!):

"...I think you will just know. If it has to be done, you won’t be able to NOT say anything..."

"...Keep expectations low ([at least] to yourself) is all I would say, maybe they’ll surprise you..."

"...You’ve got to be able to survive first to be able to meet family’s needs even if it’s meeting minimum needs. One minute at a time..."

And this last one which if I had the chance, I would rewrite and clarify a bit:

"I’m learning that suffering is ok. That I might actually learn to need and prefer it bc that’s when you are tested and get to overcome, you get to bump up against chaos and tame it, you get to have adventure instead of a boring life."

So I will take that chance now. I'd like to clarify (for myself too) what I meant by 'suffering'. 

I cannot speak to the kind of suffering that comes with chronic pain along with the ensuing mental and emotional suffering. Based on my observations of what my mom went through, I think it would be the absolute worst kind of suffering. And I can't help but wonder with all my epiphanies about living this life of suffering if I'd actually be able to apply them to a life of *physical* suffering.

And hey, God, if your reading this, I'd prefer not to find out right now, LOL. But if that is deemed as part of my story someday, I'd hope the lessons from circumstantial suffering might translate. Only time will tell. But please, God don't test me right now! (That's what we all hope and "pray", right? LOL.)

And I'm not referring to any physical 'suffering' that my medically complex kid might be experiencing. Because really, if I think he's suffering, sometimes its only because I'm projecting my own imagination of his experience onto him which is colored by all of my past baggage and experiences which he does not carry.

I can only go by his physical responses to his circumstances and my interpretations of his non verbal cues. So is he or does he suffer physically? My best guess, is obviously yes, occasionally. But it seems usually short lived, and very specific to an overcomable illness or medical intervention. And once the are resolved, he *does not seem to be plagued with the mental and emotional suffering that us neuro-typcial humans like to indulge. (*And I say all this because I 'hope' its the case.)

So back to my statement above. I 'think' I'm referring to circumstantial situations that we have an initial negative mental and emotional response (which, in my opinion and from what I've learned, is absolutely ok! Life is hard!). 

However, we usually prolong and create *more* mental and emotional suffering by milking it in our minds - which means we are dwelling in the past (which is over and done with and doesn't exist anymore) or projecting into the future (which we can only imagine and has not happened and also does not exist), and we are not staying attuned to the present (where we can actually respond, take steps, and make decisions during this actual moment in time).

So with that in mind, I'd also like to say (for myself, too) that I'm trying to redefine that kind of 'suffering' and not call it suffering at all. You can kind of tell from my text that I'm trying to redefine it as an adventure and a non-boring life. Back when I was kind of adopting this new definition, I even changed my FB profile bio to read:

My mantra:

This is my life. 

It's an adventure. 

At least I'm not bored. 😅 

(repeat, repeat, repeat...)

I see this every time I log into my profile and it's been a good reminder even if I'm not perfect at it yet.

So I texted them last night (and I hope they don't mind if I say the same to anyone reading this now!):

🥂Here’s to your very, very not boring life! 

I feel sorry for all those people with those boring lives!

Image by Free-Photos from Pixabay

Smiling In The Rain

She turned and caught her husband smiling and it dawned on her that she was dancing at the sink in the kitchen to one of the Christmas songs. Well, dancing might be a little too generous, maybe more like wiggling her butt a little (or a a lot) to the beat.

As she walked into the pantry, she became aware of herself grinning. When did this happen? When did the "I feel sad" thoughts every hour, everyday shift into a dancing, grinning lunatic who is ok with life's stuff and ok to be alive?

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Typically when they were planning a trip, her first thought was to call the local non-profit nursing facility to see if she could sign up Austin for a stay. While this usually guaranteed less stress and more freedom on the trip, they were also limited to only seven nights at the facility.

Last summer, she decided she wanted to try an extended three week family vacation to the lake. This meant taking Austin with no nurses, no extra help. Just their family.

They loaded up the truck along with a special needs stroller and headed across the country on a 3 day road trip to their destination.

She was nervous and had packed as much as she could trying to anticipate anything that might be needed for Austin. It was exhausting trying to envision and plan for everything that might go wrong with a medically complex kid and then hope to be ready for it.

But they did it. She felt a little pride and excitement then that they could travel as a complete family and survive. Of course, there were a couple of road bumps like forgetting the small tanks of emergency oxygen, but they managed to make it work.

She began envisioning some kind of normalcy returning to her family.

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She lay on the beach like a starfish on its back with her eyes closed and her face towards the sky. She listened to the ocean waves pound the shore and paid attention to her breathing. She wiggled her toes and then her fingers. She noticed the bumps in the sand beneath the sheet the yoga instructor had given them.

She was glad she changed her initial no to a yes when her friend suggested a second, "Why don't you come?"

She was at the end of the class where they were supposed to try to have no thought. Just relaxation. Just experience. Just breathing.

She felt the drops first hit her nose and then her cheek. More followed on her right eyelid, her lower lip, her forehead. Eventually her state of no thought became lots of thought specifically about her tennis shoes next to her in the sand possibly getting wet. They were the only athletic shoes she had brought and nothing seemed to dry in the damp oceanside climate even inside.

She smiled and accepted how easily she could become distracted as she sat up and peeked at the instructor while discretely turning the tennis shoes upside down.

A couple seconds later the instructor ended her state of no thought and encouraged them to carefully sit up. She put her hands together in front of her heart, bowed slightly and said "namaste". They namastayed back, "the divine in me bows to the divine in you."

They all jumped up talking and giggling about the rain holding off until they were almost done. As they scurried off the beach, she said "see you tonight" to her friend and made her way down the beachside walk towards her room.

How different things seemed, she mused again as more rain came down. How light. How in-perspective. How...dare she think it...joyful. How did she rise from that place that was so dark for what seemed so long. It seemed miraculous.

Yet there she was, smiling in the rain.

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"And whether you believe in miracles or not, I can guarantee that you will experience one. It may not be the miracle you’ve prayed for. God probably won’t undo what’s been done. The miracle is this: that you will rise in the morning and be able to see again the startling beauty of the day." William Kent Krueger, Ordinary Grace

At 1:15 AM Everything In Me Screams Retreat

I was still lying awake at 1:15 am tonight with thoughts swirling through my mind, trying to force my eyes to stay shut, but ended up staring at all the LED lights that shine in our room from Austin's machines. Green, blue, red. We have them all. I try to cover as many as I can, but I usually miss a couple or they glow through the covering.

Maybe the thoughts are the result of the bowl of pasta I ate around 9:30 pm or the fact that I worked all day in the yard trimming trees so my sinuses are nice and clogged with allergies, and my eyes are constantly watering.

But, I'm awake. So I figured I might as well record my thoughts. The usual. Get them out of my head. Maybe I'll sort something out. Maybe I'll realize its all nothing. So here goes:

First, I learned something today. I learned I need to be more careful what I share and who I share with. I need to hold some things, the most important to me things, closer to my heart. Not everything needs to be "out there" especially when I feel like I'm in a state of transition, of learning, of just figuring things out.

I also learned that I read things differently. I hear things differently. I interpret things differently. And even though I can't pinpoint what that difference is, I just know that I'm getting a different message from everyone else. However, I do think the information I'm getting is in correlation with what I'm seeking. But it might not always be the message I think the author or speaker is intending. I know. It's weird. I'm probably doing it all wrong.

So it kind of hurts my heart to feel alone like this, but I also know I can't go any other direction right now. I just have to keep taking the steps in front of me. I don't know what to do with words that resonate with me especially when they seem to be in conflict with what I'm supposed to know or accept. They appear to be outside my box, yet they are so in my box right now.

So I'm at a crossroads. It originally felt like things in my world were expanding. People seemed to be responding positively to me, my words, to what I shared. And it's not that the reactions have changed. But all of a sudden, tonight, I feel like I need to reel it all back in. I need to diminish. I need to retreat, to hide.

Second, I agreed to sing at a church thing that is coming up. I was asked to sing a solo based on my singing at mom's memorial. So tonight, I'm lying here worrying I only said yes because my ego was riding high from all the compliments I got. And now I'm seriously nervous about people finding out the truth. That maybe I'm not as good as they thought. My ego has not let me back out of my commitment yet, but I'm considering it because, again, I just want to diminish, retreat and hide.

So, is it just the pasta that is making me feel this way? Is it the allergic reaction to the Mesquite tree?

Maybe I'll know more tomorrow. The day will come. The night won't be closing in around me. I'll eat more protein. Things will be clearer somehow. Or I'll feel brave again. And I'll either feel at peace with the level of openness and fearlessness I've allowed, or I won't and I'll have to figure out what to do about it.

And that's that.

Be Brave and Pray

I'm often admonished 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 and 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 really like participating in group or corporate prayer that much 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 are 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.

When you accept your current life situation, you find there is nothing to ask for in prayer because you aren’t trying to change your circumstances at that moment. Instead prayer becomes less talking and more listening, more silence, more stillness, waiting for the next step and surrendering into it.

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.

You Are Braver Than You Know Journal Response

I tentatively joined a Facebook group to read a 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 know it's not true. Everybody has something they've gone through. And sheesh, 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.