On Staring

She lay on the bed in her pajamas staring towards the ceiling fan as it circulated above her, arms and legs sprawled like a dried up starfish on the beach. She'd been like that for a couple hours. 

Ever since she got C*v*d, 3 weeks before, when it felt like someone turned up the dial on the pull of gravity (fatigue) along with body aches and headaches and turned down the dial on oxygen and her ability to focus, all she had the energy to do, if not blessed with sleep, was to lay or sit still and stare. Staring out a window. Staring at framed photos. Staring at a blank TV. Staring at shadows. Staring at sheetrock patterns on the wall. Just staring and staring.

She's not always sure where her mind went during these staring spells. Sometimes she'd rabbit trail and think and think and cry and cry. And sometimes she'd just cry without thinking. And sometimes she'd just be.

Often she'd decide on one task that she planned to muster the energy to do: go refill her Yeti; sit up and take a pain pill; or even go to the bathroom. Then an hour later she'd still be in the same position realizing she had yet to move.

This time her staring event was a little different. It wasn't C-symptoms anymore that prevented her from moving and doing things, but some weird intense pain in her feet.

About a week before, when she finally felt like she was coming to the end of this most horrible plague (her run was 17 days except for the fatigue that clung like gum on her tennis shoe in a hot parking lot), she had the strangest thing happen. She experienced extreme pain in her feet to the point she had to either crawl or use her mom's old wheeled walker to maneuver around the house. (She was also experiencing a "red hot spot" at the base of her skull with tentacles of icy blue pain that extended over the surface of her skull up onto her forehead. Thankfully, Excedrin helped make that fade to the background. The feet pain was eased slightly by Excedrin, but the ache never left completely and standing on them made her feet scream.)

It was unlike any pain she'd experienced before, and of course, after a middle of the night google session a few days after it began, she thought she might even die from it. 

Dr. Google unapologetically suggested a combination of thicker blood while having C*v*d plus a sudden emerging ache and pain in your feet and legs might be a sign of a DVT. Basically if she didn't go to the ER, she was probably going to die from a blood clot. (So, of course, she wrote a late night blog post explaining what was happening and hinting at saying goodbye. You know, just in case.)

But alas, you may have noticed, she's still here. And for those really paying attention, she's walking and driving and living pain free like it never happened. Interesting, right? Ok, maybe only to her.

**************

“If your mind is empty, it is always ready for anything; it is open to everything. In the beginner’s mind there are many possibilities; in the expert’s mind there are few.” 

― Shunryu Suzuki, Zen Mind, Beginner's Mind

**************

So here's what happened:

Day 1 of waking up with intense feet pain and can't walk: Obtain walker. Call doc. Go to appointment that day. Get stabbed in butt cheek with Tordol and again with a steroid. Told if this works, no pain for 24 hours and treatment will be known. If doesn't work, pain will not go away and will have to follow up with x-rays, MRI, and neurology appointment. Pain did not go away. 

Day 4: Tell the world goodbye.

Day 6: Pajamas, starfish, ceiling fan. During this staring session, she decided she'd practice emptying her mind: focus on her breath, stare softly towards the ceiling fan and room shadows, allow thoughts to come and go...until...

    "You should make an appointment with the chiropractor for your skull hot spot and feet pain."

Wait. What?!

What was this thought? Was this a suggestion? Was this a command? Where did this come from? Are the pains connected?

These questions flooded her mind while she obeyed and immediately scootched into a sitting position, found her phone and dialed the number. She made an appointment for Friday afternoon. 

She felt giddy with anticipation. She couldn't wait. This was so weird, but what if?

Day 8: Friday afternoon. She took two Excedrin so she could drive. She hadn't been able to drive anywhere for 3 weeks. She felt nervous. She debated taking her walker, but saw it was going to be more work (and walking) to back out the car and then go back in to get the walker. She figured she'd just hobble the best she could and trust in the two Excedrin.

The doc called her back and asked where she was experiencing pain. She almost burst into tears just trying to describe what was going on. Then she laid on the fancy table and waited for him to work his magic with the hammer tools.

He began hammering up and down her spine describing when and where he found things wrong. He hammered at the base of her skull and her neck. He worked on her feet at which point it took everything in her not to scream. She wanted relief so bad she was willing to suffer through anything short term at this point.

And then he said ok, stand up and see how you feel. 

She never commits to saying whether she feels different at that point because it always feels a little better after he gives her an adjustment. It almost feels like a massage when you have that residual "ah" feeling before it wears off. So she says she's not sure, and she'll let him know.

That night she decided not to take Excedrin before bed. She was thinking the pain felt mostly manageable, and she was hoping without the caffeine that she'd sleep better.

Day 9: She woke up and slowly swung her legs over the edge of the bed expecting the normal surge of fullness and pain. There was hardly any. Oh glorious day!

She got up and walked to the bathroom without the walker. There was soreness, but she could walk! She could walk!

A few days later as she walked and walked and walked as if she had always walked her whole life, she would describe the pain as having been about 80% gone on Saturday and about 95% by Sunday. And her weird hot spot was gone too.

The end.

Photo by Taryn Elliott from Pexels

Do Not Read This Post: No One Should Write and Post Things at 5:00am While In Pain.

She shouldn't be awake. She shouldn't be writing random thoughts at 3:30 in the morning. Yet, here she is.

Her first c*v*d symptoms showed up on August 25, 2021. Her last post "On Aging" was August 23.

She's been ghosting the socials except for a stalkery likes here and there because what can she say? She got sick. Real sick. And so did all the people living at home with her. 

She didn't want to talk about it, she didn't want to report to anyone; she was trying to survive minute by minute while also preparing her mind and waiting to die. Because you just don't know.

After 17 days the main symptoms finally began to subside. She thought she was seeing the light at the end of the tunnel. She'd made it through without going to the hospital. 

But she'd made it through alone in her house (with help from extended family and friends). But her immediate family members that lived with her, the husband one and the medically complex one, were still at their respective hospitals recovering. They were each alone, too.

A few days ago, as she thought she began to see that tunnel end, she began having intense pain in her feet and ankles and what she describes as a "red, hot spot" at the base of her skull on her right side. 

And then all of a sudden she could't just walk to the bathroom for the toilet or to the kitchen for some water. She had to drag and scoot herself on the floor to get to these places. She then had to use her arms to hoist herself to a standing position, balancing precariously and painfully on her toes to accomplish whatever task, only to relinquish back to gravity and the safety of the floor as soon as possible.

By the second day, when she realized this wasn't going away and the pain was more intense, she requested her late mom's walker from her dad. Her brother brought it over, set it up and left. She made an appointment with a doctor for that afternoon.

Oh glorious feeling of being upright! She'd taken walking for granted again. Funny since she never thought she would after not being able to walk after having Austin. She had dislocated her pelvis during giving birth resulting in an external fixator screwed into her bones for 9 weeks and instructions for no weight bearing on her legs. 

The walker of almost 10.5 years later is very fancy with moving parts, a seat, and brakes. No yellow tennis balls on this thing. It zooms.

****************

She pauses and reads over what she just wrote. 

OMG. Who. Freak'n. Cares?! Who cares about a dang walker? Who cares that she dust mopped the entire house with her body in her pajamas before she got the walker? The walker has nothing to do with her state of mind right now at 4:00 am. 

She'd woken up realizing she needed to go to the bathroom, realizing that the meds from the morning would be completely worn off, realizing that she was going to have to brace herself for the coming intense pain. 

She turned on the light and sat there. She finally willed herself and gave in to getting up, the dull ache in her feet screaming the second she let her legs dangle over the bedside. It was like all her blood pooled down into her feet: ankles, heels, arches, toes. They felt very fat and full. 

She made it to the bathroom, sitting and scootching on the walker, pulling herself along the walls, transferring to the toilet, washing her hands by leaning her full weight against the counter for support. 

When she came back to bed out of breath, she knew she had to psyche herself up into taking Excedrin (taking pills makes her gag and get nauseous so it's a ritual of mind over matter and breathing exercises.) She then laid back on her pillows waiting for the warm glow of pain relief; the residual tingling to remind her there is pain waiting when it wears off. And unfortunately, the wide awake side affect of caffeine.

Her mind reels and rolls with existential sh*t. This could be the end (Dr. G**gle said so.) Is she ready? After some time staring at the ceiling fan rotation, she hobbled with her walker to go find her computer.

********************

She stares at the screen wondering what to say if these are her last thoughts to share with the world. She has everything to say and nothing to say. She's not afraid of death; she's afraid of the pain of death. 

Pain. Such a little word. Such a big weight.

How do people function in the world with pain? Her opinion is it depends on the type of pain.

Acute pain still has hope of relief; it almost becomes manageable just for that fact.

Chronic pain carries no hope of relief in this world. It only forces you to look beyond yourself or within yourself for help. Help to cope; help to survive; help to accept; help to surrender.

If the pain pills had not managed the acute pain of her feet, she would not be dribbling out these stupid words. She would be staring into the far corner of the room trying to keep her sanity; perhaps just focusing on her breathing, perhaps imagining succumbing to death. 

She feels tightness in her chest. Nothing new since c*v*d. Or is this new? Is this it?

She feels a strange sensation in her forearm. It this it?

Her temple is pulsating. Her eyelid is twitching.

*****************

There's a God and there is no God. There is Some-thing and there is No-thing. Her head floats above her body, light and heavy at the same time.

Is this where she says, Destiny Is All, and rides away into the sunset?

 

On Aging and Turning 50: Destiny Is All

She jokingly posted on the socials about her half century birthday. Most took it as a lament and yearn to stay young, possibly because of the emotionless, bordering grumpy, photo she'd attached. 

If she could continue to look young she might consider lying about her age and pretending to be 29 (or even 39) as many encouraged in the comments. She hasn't hidden the fact that she likes to use a good photo filter to smooth and brighten things up a bit. Saves time and money from putting makeup on.

However, when you see her in real life (IRL for the young folk), you can tell she is charging onward and upward into older age.

She's considered the pros and cons of staying young. Youth may have smooth skin, a firmer butt, and bouncier boobs, but it also comes with years of future life-education that isn't necessarily going to be anything close to smooth, firm, or bouncy.  

Youth harbors potential.

Age spawns experience, survival skills, perspective, and wisdom. 

Obviously there is no guarantee there won't be more trials in this other half of life, but hopefully what she's learned in the first half will carry her through with more grace, more ability to accept things as they come, more forgiveness for herself, and more empathy and forgiveness for others who are going through their own life-educations. 

Life is hard, y'all. 

Go forth and survive. 

And in the words of Bernard Cornwell, "Destiny is all."

***********

Often the lonely receives love,

The Creator’s help, though heavy with care

Over the sea he suffers long

Stirring his hands in the frosty swell,

The way of exile. Fate never wavers....

...So spoke the wise in heart; he sits alone with his mystery.

He is good to keep faith; grief must never escape

A man’s heart too quickly unless with his might like a true warrior

He has sought a lasting boon. It is best for him who seeks love,

Help from the heavenly Father where all stands firm.

-The Wanderer: An Anglo-Saxon Poem: Translated By Jeffrey Hopkins

Working Out My Salvation #3: Life Verses, A Bigger Vocabulary, and Different Perspectives

As she transitioned into adulthood, the phrase Life Verse (or Verses) began to show up in Christian conversation, from the pulpit, or in texts that she'd read. It always made her feel uncomfortable, guilty, or shamed because she couldn't think of one verse she could call a Life Verse. 

Attending a non-denominational Christian private school and an evangelical Southern Baptist Church in her youth had exposed her to thousands of verses that she'd either memorized or was at least very familiar with that could have been potential Life Verses.

And while lots of Bible verses had spoken to her at one time or another, none that she could think of that could be called a "Life Verse", a verse that resonated so much that it guided her mind and actions in any situation. 

She remembers getting cards from friends or family with a scripture reference (or several) written out next to their signature. She always wondered if she were to do that, could she really claim one or more verses as life altering, life guiding, life changing. Or would she just be going through the motions of the Christian version of what we now refer to as virtue signaling - signing off with a popular Bible verse because it's expected from an evangelical perspective (gotta spread that gospel) or proves she is being a good Christian. It felt false for her, so she rarely did it.

She has included Bible verses in some of her old blog posts, verses that spoke something to her situation, verses that helped illustrate, communicate, or support her message. But she never really thought, is this my Life Verse? 

Starting after Austin was born, after her "faith" was derailed, after she began seeking who and what God is in earnest, followed by all the questions: "What is life all about? What the heck is she doing here? What is her purpose? Why was she 'entrusted' with a medically complex child when she could barely keep her spiritual life on track before he came into her life? Should she ever have expectations? Will expectations always lead to disappointment? Does hope exist?"

Well, it dawned on her this week that throughout the past ten years, three verses have repeatedly come to mind and have guided her as she's asked these questions and sought their answers. 

For since the creation of the world God's invisible qualities--his eternal power and divine nature--have been clearly seen, being understood from what has been made, so that people are without excuse. Romans 1:20 NIV

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. Matthew 7:7 NIV

For God has not given us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7 NKJV

The actual references and even actual phrasing were not always remembered (she looked them up today because that's what good Christians do, they give the "address" and translation of the verse when quoting it so others can find it), but the gist of these three verses have come up again and again as she's made decisions about where to look for answers.

When she hiked or sat in a park or in her backyard, or in more recent years near the lake at the end of the dock, or when she had spiritual discussions with friends or family or observed actions she would consider beyond average, heroic even, the first verse would come to mind.

When she considered what book to read next or what podcast to listen to, which author or speaker might have something to speak to her mind or circumstances at the moment, what denomination or religion or belief system might point to an all encompassing truth, the second two verses would come to mind.

This explains why in the last ten years she has given herself permission to reach out to anything and everything with as open mind as she could for answers: 

• Because the Divine can be seen and understood in anything and everything she observes or experiences
• Because if she is seeking and asking, she can find answers in anything and everything
• Because if she doesn't give into fear, she can discern the truth in anything or everything

Before Austin she did not need to see God. She was continually told about him in church and in her Christian relationships. She accepted or "believed" that he must be true because all these people around her said so. She did not need to open her eyes and see it for herself.

Before Austin she did not need to seek or ask for anything. Again she accepted or believed what everyone else was saying was true. She assumed it was all going to plan.

Before Austin she feared reading or listening to anything outside what was approved by the church which would be primarily the Bible and approved Christian authors. She was taught to fear that she might be exposed to something that would cause her to question her acceptance and belief. The church made her fear that questioning or listening to another point of view might be a sin and undermine her faith in all the unseen things.

However after Austin, when her Christian teaching could not provide in its limited vocabulary or perspective the answers to all the questions, when the rote answer was "God is good...Lean into Christ...Cast all your cares...Have faith...", she was forced to trample fear (over and over she might add) and see what the rest of the "world" might tell her.

She needed a bigger vocabulary and different perspectives. She needed her own observations and experiences. She needed more anything and everything.

And let's just say "God" did not disappoint.

*************

If you read this far...do you have a Life Verse or Verses (Or let's say Life Quote if you have something that guides you from another source)? And would you mind sharing it with or without explanation in the comments? Curious minds need to know. TIA :)

Relative Suffering and Greatest Joys

She's been reading Tribe of Mentors: Short Life Advice from the Best in the World by Tim Ferriss and one of the most recommended books is Viktor Frankl's, Man's Search for Meaning. So she decided to go against her normal tendency of wanting to finish one thing before starting another and downloaded the ebook from her local library.

“To draw an analogy: a man's suffering is similar to the behavior of a gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the "size" of human suffering is absolutely relative.

It also follows that a very trifling thing can cause the greatest of joys.”

― Viktor Emil Frankl, Man's Search for Meaning

Suffering is always on the forefront of her thoughts since she has become aware that life IS suffering so she is very interested in contemplating anything anyone has to say about it. And obviously as a concentration camp victim and survivor, Frankl should have some pretty good insight into suffering.

Sometimes she fills guilt when thinking what little trials she's experienced in life should be at all compared to what other's, like Frankl, have experienced and call it suffering. How could there be any comparison? How could she possibly think she has suffered at all? She expects Frankl, in sharing his experience, to tell her as much,

But he seems to confirm that we cannot experience life without some level of suffering whether big or small. At whatever level, we will experience it fully as if it were the hardest trial in the world until the next trial shows us we can actually suffer more. 

She's often wondered if she manufactures suffering in her mind, but maybe she needs to. Perhaps Frankl is right in stating that the size or amount of suffering is all relative, and that any sort of suffering helps us recognize the greatest joys. So maybe she's experiencing suffering or maybe she's imagining she's suffering. 

Maybe unconsciously she does this so she can recognize joy.

**************

As a mom to a medically complex kid like Austin, she worries that she has allowed or even forced him to experience suffering just by choosing to let him live in the first place; and then by choosing to use some of the medical interventions offered in today's day and age to facilitate his ability to go on living.

But if he has suffered, then according to Frankl, he has also been given the ability to experience great joy. He may cry out in pain or discomfort at times, but he also cries out with squeals of delight and laughter. 

And don't we all? 

HE is living.

WE are living.

Peas and Obligations

It began to get stronger around the first of the year. That old feeling of wanting to withdraw from everything, hide under the blankets. It's not constantly in the forefront. It comes and goes. But its always sitting there under the surface.

The feeling scares her. She knows she's supposed to fight it. She watched her mother succumb to it over and over until it was over.

*************

A while back she made the decision that she needed to simplify her self imposed obligations in order to not resent taking care of Austin. He's supposed to come first. He's the priority.

She dropped many things (attempting to make shooting a hobby, singing or playing the keyboard with the worship team, wanting to write something meaningful and getting it published - different from writing random thoughts for therapy on a personal blog) and she felt good about it. A relief really. 

Yet even after letting go of so many things, shooting, singing, writing, and even...posting every little boring piece of her life on the socials, there must be more to let go. Otherwise, why would she start spiraling over seemingly insignificant bumps in the road with her son. 

Like not having enough Gerber peas on the shelf when it came time to make his blended recipe last night.

When she realized they were lacking this ingredient at 9:00 pm, she felt a flood of guilt for not working out a time to go to the grocery store (she can't/won't take Austin) or getting the order into Amazon so the peas would be in the pantry, or at least on the doorstep. 

Obviously something took precedence. Something was more important. 

So here she is this morning reevaluating her life. Again. 

There's one large outside-of-the-family church related role that she wonders if she is supposed to let go. She wonders if she is supposed to be free of it, to let someone else take up the mantel. Maybe. 

But she's not sure how to walk away from it. She's invested so much time in it, and she does derive a small (large?) sense of pride and accomplishment when others seem grateful for her assistance in this role.

But maybe it's time. When she immerses herself in the related tasks, she has a hard time taking a break until it's done. It's one of those self imposed obligations to prove (to herself?) that she can manage this role and that she's good at it. 

That she's good at something outside the role of Austin's mom and caregiver (is she good at this role?...remember, no peas...).

She's supposed to make sure all of Austin's ingredients are on the shelf, or meds are in the bin, or diaper is changed before it's too full, or his position is changed before he gets skin abrasions or pressure spots, appointments are on the calendar and attended, therapies are appropriate and attended, etc. 

All of which are out of sight and out of mind when she gets focused on something else. 

So she wants out. Maybe. 

**************

Three days ago, she cheated on her very low carb diet and binged two days straight on Texas Roadhouse rolls, chicken fried chicken, fries, and lots of pizza. 

She's currently detoxing these poisons out of her body. 

That might explain this post. Maybe.

*************

“Crying is all right in its way while it lasts. But you have to stop sooner or later, and then you still have to decide what to do.” 

― C.S. Lewis, The Silver Chair

To Austin: On Your 10th Birthday

It's Austin's 10th Birthday!!!

Can you believe it?! I never in a million years thought when we first got the news about his "lack of potential", to put it nicely, that we'd make it to double digits. 

I wrote this birthday blog post below on his 5th birthday. Every year I re-read it and realize I can never say it better again. Happy Birthday Austin!

************-

Tuesday, January 5, 2016

TO AUSTIN: ON YOUR 5TH BIRTHDAY

Well Austin, you turned five today. You woke up with vigor, smiling, laughing, and kicking as if you were really going somewhere, ready to take on the world. You wriggled, arched your back, and threw your head back and forth as if you could propel yourself right off the bed and into a miracle.

I take that back. You are already in the midst of a miracle. In the beginning, I never would have predicted we would make it to this day. I really did think that even if you survived your birth, you would never make it to be 5 years old. Five years just seemed like such a long time to fight the odds that were absolutely not in your favor. Many kids with similar challenges have tried and failed.

Yet here we are. You, continuing to breathe, in...out, like you have done from day one, and me, continuing to breathe, in...out, right along with you. I remember your breaths in those first few days, shallow, raspy, tentative. Yet whether it was merely your human spirit that kept you alive or your body's natural survival instincts kicking in, I'll never know. But I don't think we were completely responsible for choosing life for you. We gave you the opportunity to live, but you had the final say. You chose life too. And in choosing life, here's what you've done for me:

You've challenged me. You have forced me to take on a project that has no end in sight, to get up everyday knowing that I have not fixed things or figured out just the right solution. And yet, you force me to keep trying. I can't give up; I won't run away. And little by little you and I make small progresses, slight changes that aid in your comfort, minor adjustments that aid in mine. And sometimes we regress. That's ok too. 

You've blessed me. I'm not talking about the things we think of when we say we are blessed like your darling little crooked smile, your belly laughs, your happy chirps, or your indomitable spirit. I'm talking about the mysterious, paradoxical, "beatitudal" blessings that occur when life persecutes. You've caused me to be poor in spirit and have to lean on others for their faith, to mourn and experience grief to depths I never have before, to take on meekness as I admit I'm not strong enough do this alone, to hunger and thirst after God for answers. 

You've loved me. You have managed to extend that trusting, dependent, newborn type love out over five years and will probably continue to into the future as long as you are dependent on us for every aspect of your care. It's a draining kind of love. A dependent love. A desperate love. You need me. But I need to be needed.

I had always held out this five year mark vaguely in the back of my mind as some kind of destination. For some reason, I had certain expectations of things that should have happened if you lived this long. I thought for sure that you would be holding your head up on your own by now, perhaps have a few understandable words in your vocabulary, maybe even be moving towards a crawl or even a walk. But now as we are hitting this arbitrary marker, I wonder what my goals for you should look like? What are my goals for me? Where do we go from here? How do we get on?

And yet. We will get on. We will wake up everyday, sometimes with vigor and ready to take on the world, and sometimes with fear and trepidation, feeling puny and needing constant care. We will be challenged, blessed, and loved by each other, by our family and friends, by our God. We will stumble, fall, and fail. We will get back up, shake off the dust, and renew our spirits. We will continue the miracle to whatever its end. We will continue to breathe, in...out.

On Lists and Living His Best Life

I secretly congratulate myself after we arrive at our winter vacation destination. Preparing and packing for this road trip seemed to go so easily this time. Almost too easily. 

I have a packing list on my computer that I started when my now adult boys were little. After Austin was born, that packing list became the saving grace for us to be able to leave the house for extended periods of time, confident we had everything including the kitchen sink. Austin's list is twice as long as mine and my typical kids'.

While I'm digging in the bag for his 3 inhalers, preparing to count his twelve breaths as I administer each one, his dad walks in and casually asks, "Hey, where did you pack that white stuff?" 

He's referring to the main fat ingredient in his custom, ketogenic feeding pump recipe that he's on to keep him in ketosis for partial seizure control. It's a medical grade, emulsified MCT oil. You can buy it off the internet, but as with all "medical" products, the markup is 8-10 times what it should actually cost. Thankfully it's something insurance pays for and ships to us through a medical supply company. 

And at the moment it is currently sitting in our home pantry, miles away.

Dagger in my heart. 

That's what that niggling feeling was when packing had seemed too easy. 

I stay calm (for once - work in progress) and start problem solving. I have access to the nutritionist's keto calculator and permission to adjust Austin's recipe whenever necessary (and thank God, because sometimes I run out of an ingredient and need to substitute something else temporarily - the only risk being that he may not tolerate the new substitute ingredient.) 

Thinking about what might already be here in the cabin, my first thought is to try olive oil until I remember they sell regular MCT oil in the store to be added to coffee and stuff. I add the ingredient into the keto calculator and come up with an equivalent amount to satisfy Austin's diet parameters. We cross our fingers and make the recipe with regular MCT oil hoping he will tolerate it until we can get our home supply shipped overnight to us. (Thanks grandad!)

Onward and upward.

After I give him his inhalers, I brush his teeth. He usually ends up with a mouth full of toothpaste-y secretions no matter how little I dab on the brush. 

I flick the switch on the suction machine to get the extra foamy saliva out of his mouth so he doesn't try to swallow or inhale too much of it.

The motor sounds sad and lifeless. No problem. I had forgotten to charge it in the hotel the night before, but I can charge it now and also run it while it's plugged in. 

I lift the side pocket flap. No charging cord. I lift the other side pocket flap. No charging cord.

Another dagger in my heart. 

How could this be happening? I have a list!

********

In this past year of 2020, the year of Covid-19, stay-at-home mandates, social distancing, masks, protests, rioting, and election turmoil, Austin lived his best life so far.

He's had virtually no school (5 days for the entire year), almost no nursing care (the occasional visit here and there when we've asked), no therapies (until this last month when we restarted the outside-of-school options). 

But he's also had no sickness, no hospital stays, and the best part, no expectations, and no obligations.

Austin and I have become the best of friends. We are together most of every day. 

I provide all of his care during the weekdays and share his care with my husband in the evenings and on weekends. Whenever the big boys have been home for holidays, they help out too. His grandad has also spent a few hours here and there watching him if I need to leave the house for an appointment during the day. 

I've learned for now, that unless we need a break to go on a date or out with friends, I don't really want a regular nurse schedule, or the stress of interviewing, or the stress of nurses calling off at the last minute. I realize there may be a time we need a regular nurse schedule again, but right now I actually love not having strangers in the house all the time. It's almost like we are normal.

I also love not having school. No rush to get ready early in the morning. No anxiously anticipating if they are going to call to have me pick him up in the middle of the day. No anxiety over him having seizures, aspirating, or getting sick at school. 

And best of all, no dress up/theme days for me to feel guilt over not participating, no school supplies I have to feel guilt or stress over providing or not providing, no anxiety over bus driver or nurse schedules aligning with our own personal schedule of doctor appointments, sickness, or vacations. 

This year had been a breath of fresh air. 

Weights off shoulders. 

Priorities exposed. 

New lists written.