Dear Austin: On Grief

Dear Austin,

It’s been 5 months. 

This last month was the hardest yet. I feel like I cry everyday.

Sometimes sobs just bubble up out of me with no warning; sometimes they are preceded by a glance at a photo, a walk past your day room, or a strong memory.

I miss you so much.

I thought I knew grief. I did not. I thought all grief is the same. It is not.

I now think grief due to unrealized expectations is different from grief due to loss. Not harder, not easier, just different.

I mean, loss includes unrealized expectations. I expected you to keep on living. I expected your care to continue to consume my life. I expected you might outlive me. I expected to see your smile every morning, and hear your coos and chirps throughout the day.

But loss is also final; there are no more unrealized expectations. There’s just an end. A hole in my soul. A gap in my routine. A missing thread. 

A screaming silence.

 

Dear Austin: Snuggling God

Dear Austin, It's been four months.

It feels like your life has been reduced to a story; photos in a frame; words on paper; fading memories in your loved ones minds; crushed bones in an urn; your life energy released back into the universe, back to the Divine Source, back to God.

I wish I could snuggle you again. 

You weren't a fan of being held in a lap; it was hard for you to breathe easily and get comfortable because of your twisted, awkward body. 

But you didn't mind a big hug while you were lying on your side; I'd bend over and wrap you in my arms and press my cheek to your cheek, feeling your smile when your cheek squished up and pressed back to my cheek in return. 

If I made sure to slide an arm within your arms, you would pull tight; exerting a hug like pressure back to me. There were times I became very uncomfortable in that bent position; not wanting to move until you let go.

Those who know me through my writing, know that I've struggled trying to figure out how to "Love God". I'm always thinking about it, trying to sort it out in my head. 

Which is the problem. 

I'm always trying to use my mind to define God as something concrete rather than the more nebulous Divine Source/Love Energy/Christ Mystery that "He" is.

But since we are human and need to experience the concrete to understand the indefinable, the mystery-unveiled probably lives in the other half of that teaching, "Love Others". 

I loved God when I loved Austin. 

I held and snuggled God; and God hugged and smiled back, cheek to cheek.

Dear Austin: Why Now?

Dear Austin, Where are you?

Maybe it’s because I loaded 2000 photos of you onto a digital frame; maybe its because the frame cycles through all the photos every 2-3 hours; maybe it’s because I see your whole life literally flash before my eyes throughout the day, but I can’t get past that you were here, you existed in physical form, and now you don’t. 

You’re now just a memory I’m desperately trying to hold on to.

————-

I’m reading a book that I’ve already decided I’m going to need to read again with a pen in hand.

Perhaps it’s because your leaving is still so fresh that any book speaking about Christ mysteries would resonate with me; or perhaps the author’s words feel like they confirm my own learned experience with you. Whatever it is, I feel throat tightening, nose tingling, eye watering symptoms as my head and heart nod in agreement.

And as I’m reading, the familiar truth “with great love comes great suffering; with great suffering comes great love” hovers within my little brain, and lands within my little soul. 

A mystery now known.

———————

The questions linger. It took me so long to come to terms with how to care for you, how to love you; to be at peace with our life situation; to embrace the adventure. 

So why now? Why did you leave after it seems like I finally figured it out? We only had one clear year of acceptance out of almost 13!

I wanted more. I needed more. I wasn’t done. I had so many plans to make up for lost time; but time ran out.

At moments in my deep sorrow while gazing at your beautiful little face in the photo frame, I can feel you say what I don’t want to hear:

“Its ok, momma. I taught you how to love. Now go love others; go love God.”

The Divine Breath

It’s the second meeting of the women’s Bible study group. I sit nervously debating whether or not to share my answer to one of the discussion questions. It's one of the few in a ‘round about way’ that I filled out an answer for.

But one of the guidelines/rules (a literal list handed out the first night) is that the Bible is the ultimate truth. So as a rule follower, and since I read and listen to so many sources now, I could not remember ever reading my exact answer in the Bible so I wasn’t sure if I should share (yes, there are passages that parallel or could support my answer, but I can’t think of an exact description like the one I’ve internalized somewhere along the way). 

So thus my quandary. I could not remember where my answer came from. I just know that I came across it somewhere, and the idea got filed in my brain or heart as truth. Fortunately (or unfortunately?), before I could finish my internal debate, the group had quickly moved on to the next question; problem solved.

But I've been ruminating about it ever since. And I know I might get it out of my brain by writing about it here on my blog. And since I don’t have any rules, I've decided this is what I will do.

The study book had us read about a few names of God found in the book of Isaiah. And a discussion question asked if one of the names resonated more than another. 

The answer was easy for me. I chose YHWH in response to a side note that reminded me that YHWH “was considered so holy that even scribes didn’t say it out loud.” 

I’ve heard that within the Jewish faith, YHWH should not be spoken. But at some point I came across the suggestion that it’s not that it SHOULD NOT be spoken, but that it CANNOT be spoken. 

The story goes, as I understand it, that due to the Hebrew breathy-consonants that make up the word, YHWH sounds like it’s being breathed when spoken; and when breathed/spoken, it sounds like breath itself. 

I find this to be a beautiful, concrete image of the role of the Divine in creation; or as the Bible puts it (and I'm pretty sure this one is in there), the Breath of Life.

So when I filled in the blanks of the “complete-with-your-own words-sentence”, I wrote “I can trust Yahweh with my existence because He is breath”. 

The answer came quick and easy; complete and confirming. It’s the divine breath that animates us; we pray the name with every breath.

(As I write this, I googled to see if I could remember the source of where I heard this YHWH story that has lingered in my mind for so long. I guess I shouldn't have been surprised that the idea is very common and discussed in numerous locations across the internet; that I'm not the only one contemplating it.)

___________

Have you ever noticed that when you are thinking about something a lot, you notice "the something" everywhere? For example, if you are thinking about buying a certain make and model vehicle, all of a sudden it seems like everyone and their dog is driving that particular car. 

I've always wondered if the instructions in the Bible about seeking and finding relates to this phenomenon;  like when I look for signs of Austin, I see him everywhere; when you look for signs of the Divine, you will see evidence everywhere.

At church this past week we sang two songs that (for me) noticeably referenced breath. One of the songs has been playing on repeat in my head for days:

It's Your breath in our lungs

So we pour out our praise

We pour out our praise

It's Your breath in our lungs

So we pour out our praise

To You only.

(Great are You, Lord, written by David Leonard, Jason Ingram, and Leslie Jordan)

 

 

Dear Austin: It’s Been Two Months

Dear Austin, where are you?

Usually when I have thoughts of sadness, angst, or despair it physically manifests as tightness in my chest and throat (along with tears, of course).

No one told me losing someone unexpectedly would physically manifest as nausea; I can’t think about the night you left without wanting to vomit (along with tears, of course). 

—————-

I gather all of your oxygen supplies by the door for the DME company to pick up. As a borderline save-in-case-of-emergency hoarder, no one prepared me for the panic I feel giving away your equipment; how will I take care of you properly if you return home?

And this is just the first round.

—————-

I drive your wheelchair van to the conversion-vehicle dealership we originally bought it from to get an appraisal and bid for buy back. 

I sit in the waiting area remembering how excited and proud I was that I was able to get every feature I wanted for you; I researched the hell out of that van. 

I pull out of the parking lot into a mood of soft gray skies, drizzly rain, and Bryan Adams singing “Everything I do, I do it for you” on the Bluetooth; I glance in the rearview mirror to see if you are smiling. 

“Zoom, zoom, Austin.”

One Is The Loneliest Number

On a Sunday morning about a month or so before Austin left us, I walk alone into the school gymnasium where my church holds its services. Husband is home taking care of Austin for whatever reason: sickness, weather, or we started too late to get Austin ready. 

The greeters greet. I briefly smile, but barely make eye contact, looking past them rather than at them. 

Eye contact is intimate. It means I know you or want to know you. It means I should remember your name.

I have a hard time remembering peoples names. Even those I’ve spent time with and have known in the past, very familiar faces. I recognize them, yet can’t recall a name when put on the spot. So I just find it easier to avoid people, if possible.

This became even more of a necessity or habit as I gradually dropped out of attending church functions and serving in ministries. 

I used Austin as my excuse. I either felt guilty leaving husband home alone to care for Austin; felt guilty spending time preparing for or working on church projects at home (since I tend to immerse and not come up for air until done, leaving Austin on the back burner); felt guilty for leaving Austin with a nurse or family member when I left him all day at school already, or felt guilty that I never could completely commit to “homework” or show up to every meeting. 

That’s a lot of guilt.

It was easier just to let most activities go, church or otherwise, in the name of Austin.

I take a bulletin that lists all the groups and events that are going on this winter and scan the room for family. At least I could remember my family’s names.

I see my dad. Thank goodness; a buoy in the ocean . I go stand near him. We hug and make small talk. I ask if he is staying for the next service. He says no; he just plans on counting and leaving, having already sat through the first service.

I scan the room again and see my sister-in-law. In a state of relief, I make a bee line for her. However, she is speaking with someone else, and as I get near, I can tell I would be interrupting so I u-turn it back to safe harbor next to dad. 

At this point, I’m overwhelmed with the realization that I am a stranger of my own doing in my own church. Church suddenly becomes the loneliest place on earth.

And you know what’s coming. Without warning, I begin to cry as waves of loneliness crash over me. Lots of snotty tears…in public.

Of course, dad is concerned and looks super uncomfortable. So I blubber about how lonely I feel here; that I have no friends; that family is all I have and I don't see anyone available to sit with; and that I’m probably going to leave. . .

Dad then declares he is staying, and that I will sit with him. My sister-in-law ends up sitting with me too. I can tell she’s aware something is wrong but is treading lightly about asking since I am still sniffly and teary-eyed.

I do my best to just stare straight ahead or at the ceiling for the entire service (the best place to stare when you are trying to get tears to stay in your eyes rather going down your cheeks); thoughts roiling through my head as I analyze how I’ve ended up in this state of aloneness.

________________

Over the next couple weeks, I have periods of uncontrollable lamenting at home while taking care of Austin by myself; husband may have been at work or traveling on those days. All I know is I try to only allow myself to openly go deep into feelings when he’s gone; to get it all out so I don’t bother him with it on normal days. 

But I’m not afraid of letting feelings wash over me in front of Austin. It’s cathartic and my therapy. And he isn’t going to tell anyone, right? Usually he just laughs and giggles at all my sobbing and wailing as I uninhibitedly pour out my soul to whomever might be listening in the aether.

But was he as unaware as I thought? I mean, once we got the Talker, we began to realize how much he understood. And while exciting to think he knew more than we gave him credit for, I now realize he may have known (and internalized?) so much more about my ongoing struggles with being a caregiver, periodic bouts of unhappiness, and now, my intense loneliness since I’ve never shied away from expressing myself when I thought “no one on this side of the veil will hear me” (just maybe my neighbors).

But was he listening? Did he feel responsible for my “plight”? 

Did he choose to exit this life at his next opportunity because he worried about me? 

___________________

I sit in the Women’s Bible Study as we go around the table doing introductions. We are supposed to give a little history about ourselves and why we are interested in studying the Book of Isaiah (the topic of the 7 week study).

I’m dreading my turn. My answer is not to know more about the Bible or God. My answer is way less holy than that. 

Fortunately, I’m almost last and everyone has set the pattern of what to say. Our history is translated into how you ended up in this community.

It’s easy to tell how I ended up here. I follow their pattern…28-ish years in the Texas/Arkansas/Oklahoma area, 15-ish years in Montana, and the last 10+ years here because I have a medically-complex child, and the melding of extended family and a children’s hospital close by are were necessities. 

Of course, as I mention my medically-complex child, I have to mention, in case anyone is living under a rock, that he happened to pass away at the end of November this past year. And of course, I have to choke this info out in between tears.

Then I’m supposed to say why I’m interested in studying Isaiah so I, more or less, say that it isn’t WHAT we are studying that I am interested in, although, I end up declaring "I DON'T KNOW WHY I’m here."

But the truth is, I do know why. 

Based on my feelings that were brewing up to the day Austin left, I’ve been wondering if one of the reasons he left me is so that I wouldn’t have an excuse to be lonely anymore. 

He left me alone so that I won’t be alone.

That is why I was sitting in that room. 

Last Sunday at church, I had told myself that I would sign up for the next Women’s Bible Study, no matter what is was, so that I can re-make friends and not be lonely in church.

I’m doing it for Austin.

Dear Austin: I Hope

Dear Austin,

Where are you?

Do you remember how I was looking for you? Begging you to let me know you are alright?

I asked you to visit me in nature? And you sent me a lone bee.

I asked you to visit me in my dreams, and at first, you refused. 

Every night I went to bed, hoping to dream of you, to see you one more time.

_____________

And then about 3-4 weeks after you left me, you came to see me for a whole night in my dreams! 

I was able to wake up and go back to sleep without missing a moment, picking up right where I left off.

And remember what you did?

We were at a school or in a play room somewhere. I was sitting near your wheelchair when you suddenly decided to turn yourself around and try to slide out of the chair without my help. 

For some reason, instead of jumping up to help you, I just watched.

At first you stretched your longer leg down to the ground, testing it. It was strong.

Then you slowly slid your shorter leg (the one we called your Nemo fin) down to the floor until it made contact. It was strong.

You were tentative and wobbly as you let go, but the leg had somehow grown to match the length of your longer leg, and they held you up. You shifted back and forth, testing your legs. 

You turned and carefully walked away from me...and then you let out a laugh and ran! 

I was in shock. 

You ran and ran, around the room, to the big window, past other kids, to the other side of the room out of sight. You just ran without looking back.

Eventually you ran back to me. I gave you a big hug and told you how excited and proud I was of your new skill. You just smiled and laughed and ran away again. 

I didn't see you again in that room.

Later in the dream, we were riding a bus home, maybe from that place. 

The bus pulled over because there were some men in robes blocking the road. 

When it stopped, some of them boarded the bus and started evangelizing, trying to tell us about "salvation" and "the good news" and "the gospel".

I bluntly told them I didn't need to hear it, and I pointed to you.

I said, "Look at him, I have my salvation right here!"

________________

Oh, Austin. 

I hope the dream is true.

I hope you are running free and having fun. 

I hope you know I miss your little smile, and grin, and belly laugh. 

I hope you know that no one could have taught me what you've taught me.

I hope you know that I'm a better person for having known you. 

I hope you know that your short, difficult life had purpose.

I hope you know that I love you.

Oh, Austin.

Dear Austin: I Want

Dear Austin, 

Where are you?

Since we left to go north for our winter vacation on the heals of your Memorial Service, and since we didn't get home until yesterday because we didn't have the constraints of your school schedule, today felt like the official first day of my "new normal" since you left us. 

I went to work, but you did not go to school. I don't like it.

I want to sing your "Good Morning" wake up song. 

I want to stroke your soft hair and arms as you squish your face and fuss and try to ignore me. 

I want to see your eyes try to open as you finally turn your head and body towards me. 

I want to see that little morning grin when you recognize me.

After daddy carries you or I pull you in your zoom-zoom chair to your day bed, I want you to tell me with your talker that you want to watch Blues Clues. 

I want to give you nose drops and suction your nose and throat. 

I want to count to 6, 6 times, while we do your breathing inhalers and you try to dodge the spacer. 

I want to brush your teeth and suction the foam from your cheeks. 

I want to ask you to roll on your back and watch while you always do your best to try to do it yourself. 

I want to clean your "button", add ointment, and tape fresh 2x2 gauze around it. 

I want to scrub your face, ears, neck and torso with a damp wash cloth. 

I want to put eye drops in your eyes. 

I want to change your diaper and put a clean shirt and shorts on you.

I want to take your temperature and o2s. 

I want to put on your socks, ankle and torso braces. 

I want to lift you into your chair and get you positioned for the drive to school. 

I want to check your backpack for meds and supplies. 

I want to load the suction machine, food pump, and talker onto your chair. 

I want to tuck your monogrammed blue rag under your chin. 

I want to buckle all the straps on your chair. 

I want to wheel you into the garage and into the wheelchair van and hear the lock click. 

I want to squeeze on either side of the chair to reach the seatbelt and fasten it. 

I want to look in the rearview mirror as we back out while asking you if you are ready to go to school.

I want to ask you if you want to go see friends, teacher, and your nurse.

I want to watch your face as I speed up and we talk about going zoom zoom.

I want to see your big grin while I play the music loud.

I want you.