A Night To Remember by Jonathan HagEstad

I don’t remember much. I tend live in the moment, not too worried about what happened yesterday or the day before. Once a moment passes as insignificant, I delete it from the archives of my memory. I have never purposely been looking to my surroundings to capture a moment in my mind. To seal up time in a bottle. As to not let time slip away into the history of the world.

My mother was always trying to take pictures. Trying to stop me from growing up. It never worked, as time kept on swimming. There are few events where I remember every detail. Christmas was always one of my favorite times of the year. Getting to spend time with family; without a worry in the world, or so I thought.

The day was December 23rd, 2016. My family and I had taken my little brother Austin, to get surgery done on his hip. There were only a few qualified doctors to do this procedure so to keep my family together during the holidays we all took a trip to Texas. The operation went as planned and seemed very successful. We were hopeful in that we could return home for Christmas.

I walked into the room he was resting in. There was a low, constant never ending beep, underlined by the motor of the oxygen machine. There is a certain smell in every hospital, a smell that encourages you to find the nearest hand sanitizer dispenser. A nauseous feeling of exhaustion clouds the room.

To look on the faces of my mother and father makes you believe zombies are real. They took turns spending the night in the dreadful hospital. Loss of sleep turned them into machines. Coffee being the fuel that keeps them running; while in their eyes, you could see the hell they have been through. Wishing, begging, and hoping for the release of a good night's sleep.

My brother looked like a marshmallow. Face and arms puffy as if he was a small fragile cloud in the bed of cloth. His eyes sealed shut; his enlarged eyelids like safe doors locking him inside his mind. The small wheezing sound as if breathing was the most difficult task in the world. The bandages over the sealed up surgery. Dried blood calls your eyes to its attention, screaming.

I tried to lighten the mood; a satire that Austin looked like the Michelin man, fell on deaf ears. There was no reaction. It was as if I had spoken to an empty room where my voice echoed in the eternity and fell swift by the blanket of silence that covered the room. Again the beeping of the life support reminding us of the terrible situation.

*Christmas Eve had arrived, with still no change. My parents still taking turns sleeping in the hospital looking over Austin. While the other tries to gather any sleep at all at the rental house with my older brother and I.

It was my fathers night at the hospital. When we had left he was there watching Austin; holding his helpless hand. At the rental house my mother, older brother, and I were drifting asleep. It was a cold silence. Nobody spoke and nothing could change the mood.

I finally found rest at midnight only to be jerked awake by a small riffling at the end of the bed. The small tug at my feet. My mother standing at the edge of the bunk bed. In the darkness I could not see her. The lack of light concealing her face, hiding her tears. I hear a whisper from the darkness, in the direction of a mother, scared for the life of her youngest.

“Your father just called, he said the doctors don’t believe Austin will make it through the night.”

She left for the hospital without another word. I felt alone. A loneliness of despair and hopelessness. I felt defeated with nowhere else to turn to... I prayed. I have always been religious and followed Christ but I rarely prayed. I cried out to God. Begging for the life of my brother. Asking to switch places with him if it is a life he required. I got no response. Lost as I remember as I doubting.

At my lowest point nothing was as strong or as powerful as what I felt after. A comforting warmth surrounded me, It was an immediate calming which stopped my crying. It spoke to me and said “Be still, all will be well.” A vision of Austin walking in my house in Arizona. Nothing was more real. My life had been changed. Nothing could ever make me doubt again.

My parents picked up my older brother and I. We saw Austin that morning and his condition was better than what anyone could believe. He needed to stay at the hospital for monitoring before he was transferred to Phoenix children's.

Austin got better and soon after we were a whole family again. Finally getting our whole family together in one place, we had Christmas in January. Together and whole.

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Jonathan wrote this as a class assignment in high school at some point in the last couple years. They were supposed to use a photo for inspiration. He had shared it with me after he wrote it and, at the time, gave me permission to post it on my blog. I remember wanting to post it close to the anniversary of the events, however, I forgot to do so last Christmas. But I remembered this year. Yay!

*The photo was actually taken and posted to FB and Insta on Dec. 27, 2016 as a late Christmas "card". However, in Jonathan's essay he wrote that the events occurred Christmas Eve. I found it interesting as well as disheartening that he records this as being an event that happened on Christmas Eve. It speaks to how tired we all were and how all the events were running together.  

I decided not to edit the timeline nor did I do any editing grammatically because it's his words and his impressions and they are perfect the way they are. 

Austin did get released from the hospital from his hip surgery on Christmas Day. He was puffy and lethargic, but they wrote it off as symptoms of being medicated and after effects of anesthesia so he was released. We were glad because we were ready to get back to "normal".

I actually tried to create a pretty memorable Christmas that day at the rental, relatively speaking. We microwaved our traditional breakfast of monkey bread and played Uno as a family while Austin tried to recover next to us. (You can read my version of all the events here...)

But I guess the fact that we had to rush him to the ER that Christmas night, and he fought for his life the next several days, kind of erased any memory of "fun" we tried to have on earlier that day.

If I remember correctly, which is probably just my own impression, the photo was taken after the doc told us that Austin may not make it and it was important for us to get the kids up to the hospital to see him one more time. Just in case. Michael had a pretty bad cold, but they let him come see Austin anyway. 

I look at this and realize this really could have been our last family photo.

What Do a Vacation Loft, Porch Swing, College Class, and Church Have In Common?

As I climbed the stairs to the loft to check out my digs for the weekend, I immediately spied it: a wasp clinging to the window over the only chair in a sitting area at the end of the hall obviously intended for guests.

No worries, it was dusk and as I was admiring the view to the lake, I kept a wary side eye on the insect's body trying to detect movement.

It didn't move. It just clung to the window like it was stuck. There were also a couple of ladybugs in the window sill also not moving.

Oh good, the thing is dead and apparently must have died while sitting there on the window. Whew.

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Ever since I got stung by a wasp while sitting on my grandma's front porch swing as a kid in Arkansas, wasps and I have had a nervous relationship. When we enter the same room, we are immediately aware of each other's presence.

I'm pretty sure that when I see one, my body instantly gives of the colors and smells of fear and anxiety, and apparently wasps really like my colors.

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One morning as a new college student at the University of Arkansas, I was confidently be-bopping down the sidewalk on my way to a landscape rendering class with my head full of long, freshly scrunched, permed, spiral curls.

I had the cutest leather headband to hold it out of my face, but I had allowed the full mass of curls to extend as far as they wanted out from my head. I had some big hair, y'all, I knew the boys liked it, and I planned on getting attention that day.

All of a sudden I saw one of those big Arkansas red wasps heading straight for me. I instinctively bobbed and weaved and batted at the side of my face at the last second as I heard that frightening buzz of its wings near my ear.

And then I heard and saw nothing. It disappeared as quick as it had shown up. All I could think was that it was a close call as I calmed my breathing, regained my composure, and continued on my way.

I'd forgotten about the near miss as I found my seat in the circle of chairs in the room. I settled into my spot and retrieved my notebook and pencils, ready to sketch and take notes.

And then I heard the loudest, most scary buzz ever as I felt a movement next to my neck and the subsequent sting! I screamed and jumped up out of my chair, flipped my hair around and batted at my head sending my headband into the middle of the room!

The professor's and other student's reactions at first were "WTH!", and I'm assuming they would have thought I had been possessed by a demon if the large, wasp evidence hadn't been splatted on the floor next to me courtesy of the bottom of a friend's shoe.

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When I was a young married in my early 20's, my husband and I arrived as guests at the catholic church his family was attending. It was a very large congregation, and they were meeting in a massive gymnasium.

Didn't matter. As I sat down, my peripheral vision caught movement up near the ceiling on the very, very far side of the gym. I nudged my husband and pointed it out. The thing was a monster.

We settled into the flow of the service while I kept one eye on the wasp as it appeared to erratically fly this way and that with no intended destination, but I knew. We had locked eyes and it was coming for me!

My heart raced, and I tried to breathe calmly hoping to quell my anxiety and erase my aura of fear.

It swayed back and forth up near the ceiling, gradually making its way towards me. I couldn't take my eyes off it now. I was paralyzed.

Maybe I had nudged my husband a few times as it was getting closer because he was watching it too.

It was flying and swaying lower and lower, getting closer and closer. I was sitting as still as I could with my back pressed up against the seat trying to hide behind the person next to me.

I barely breathed as it hovered over our section of chairs.

Then all of a sudden, down it came with one fell, determined swoop, put on its breaks, and LANDED ON MY KNEE!!!

My husband, knowing my intense fear and typical fight or flight responses and probably hoping I wouldn't make a scene, quickly reacted, swept it off my knee with his prayer book, and stomped it into smithereens onto the gym floor!

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The next morning, I adjusted my eyes to the bright window looking for the wasp as I walked down to the little sitting area of the loft to make some Keurig coffee. It was still there in the exact same spot. Thank goodness.

Upon closer inspection, since I was going to settle underneath it in the chair to write, I noticed its wings had drooped a little from their position the night before.

Yes. I notice these details. I have PTSD wasp trauma. I'm sure it's a diagnosis. Look it up.

I thought, well it must be gradually succumbing to gravity since its not living. I suppose eventually it will dry up and fall to the window sill. So I mentally brushed it aside, and curled up in the chair.

But a couple hours later, all of a sudden I heard that buzz. The warmth from the morning must have heated up the window and RESURRECTED THE DEAD. Even the ladybugs that I thought were dead had perked up and were starting to walk in circles on the glass.

For once a wasp pretended not to notice me so I pretended not to notice it even though I was hyper aware as it made its 3-4" jaunts away from the window, circled around and then body slammed itself into the glass over and over again. Bzzzz. Bzzzz. Bzzzz.

I pressed on with my writing hoping my aura color would not get its attention. I planned to Snow White my way through the rest of the weekend. I mean, I probably wouldn't snuggle with it, but I may have to sing a little if it gets that crazy look in its eye.

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

The Way Too Long and Boring Story About Getting a Seizure Med Refill

Since I was the only one on the rollercoaster train, I plopped into the center of the front car, ready for the full experience as it pulled away from the loading station. I braced myself, took a deep breath, and let it out slowly as it started climbing.

I picked up the phone and dialed the number for the pharmacy. I had gotten another little app notification and this time it said, "there's a delay in filling your prescription due to an insurance issue."

Of course there was! Austin had a new and a renewed insurance as of October 1st for both primary and secondary. So obviously there would be an issue with at least one of them, if not both.

If I had requested a refill in a timely fashion, my stress and anxiety levels may not have skyrocketed like they did. But the problem was that 6 days before, the pharmacy didn't have the entire refill of his seizure medication in stock. And then I completely spaced that I only had a partial refill.

So by the time I realized we were almost out again (after I scoured the kitchen looking for "the refill" I was sure I had already ordered and picked up - duh, the partial!) it was Thursday evening, and I was going to use the last one Friday morning.

But no worries! It was covered 6 days before so surely they had new stock into the store by now. I just pulled out the app and put in for another refill.

I started getting the first of the delay messages on Friday morning. They were still out of stock.

Seriously?! Ok, no big. I'm out with Austin hiking for Fall break. I'll just cruise by the pharmacy on the way home. I'll take him in with me for a little visual persuasion to plead his case about needing the med TODAY (don't tell me you other medically complex moms don't do this, no?). Once they see him, I'm sure they will want to figure something out! Who can deny that cute little face that belongs to a wheelchair bound kiddo who's fussing quite loudly because he does not want to be at the store standing in the pharmacy line? Right?

Well it worked. Sort of. They urgently called around to several other pharmacies until they found one that had it in stock. Apparently is was back ordered everywhere! But it's all good. The new pharmacy had it, so I just needed to wait until I was notified to go pick it up.

So we went home and waited for that little text message that tells me the script is filled and it's $0 dollars.

Instead, I got the "delay due to insurance" message followed by "it's filled and it will cost $563" which means secondary insurance wasn't covering it for some reason. Which is weird because they always cover it.

So I made the requisite phone call to the pharmacy and they acted like they weren't sure what the problem was and that maybe I should call the insurance company.

Awesome. My favorite. The number on the back of the card to call has been going to an empty Cisco systems voice mailbox for months. I tried it anyway just in case. Empty voice mailbox.

Racking my brain for who I could call, I remembered I had the family care coordinator's direct line which I got last time I had a major issue.

When I remember to use it, it's usually quite magical because I can speak with someone right away who is directly responsible for his account!

Except for Friday afternoons apparently. I was redirected to the dreaded empty voice mailbox.

What the...?

We are taking forever trudging up that rollercoaster hill now. Anticipation and anxiety level is rising! 

I looked through my old contact notes and found another number that was supposed to take me to the main family care center where they could help if his coordinator wasn't available.

Bingo! Got someone. They tried to pull up his account. "Sorry, I can't access that account. I'll have to call the supervisor. Hold please."

For the next two hours, I was either on hold or being transferred to someone who couldn't help and wanted to put me on hold to transfer me again. There was a point where I had both my cell phone and the house phone in my hands on hold with two different people (because I decided to also try the nurse triage phone number on the back of the card while I was on hold on the cell phone).

Remember, I once got a trophy for the Best Trying, Trier Who Tries! I don't give up easily.



Well finally, a lady in North Carolina tells me she can actually pull up his account and that the screen says that he needs a renewed doctor's Prior Authorization on file.

Poor lady. I wail to her that this would have been helpful to know, you know, BEFORE Friday night and the weekend! Hello! This is seizure medication! Then I break down into big boohoo tears while she listens. She tells me, "Don't cry...." And I'm like, "oh, ok" (instantly dried tears). Yeah, NOT!

This normally wouldn't be such a big deal. It would usually get sorted over the next couple days after a few phone calls and emails. However, I needed the med tonight! Or at least by tomorrow.

I'm usually ok if he misses a seizure med here and there. Not my favorite though, and yes, he will often have a seizure due to missing medication because they are not completely controlled, however, now I was looking at probably going a whole weekend without the med.

Which means my brain conjured up the worst of all the possibilities: he could have multiple seizures, we'd have to use rescue meds, they wouldn't work, he'd lose consciousness, we'd call 911, we'd spend the weekend or more in the ER/inpatient.

(Which then I thought, well that would serve the insurance company right because they would have to pay for it, and it could have been solved by just paying for his meds this weekend. Ha.) Oh yes, I have a LOVELY imagination.

At this point I'm in full on freaking out mode (obviously). On top of still needing to get this sorted tonight, it was time to shower real quick (I had to, my sweating game when stressed is on point), and throw on my football mom shirt and get to Jonathan's game.

However, while in the shower (where I do all my best thinking and have all the best ideas) I have an epiphany! I'll just buy 8 pills out of pocket which would get me through to Tuesday morning and would buy me time to get things fixed on Monday. Sometimes I amaze myself by being so brilliant.

The rollercoaster car finally crested the hill and slowly started to roll down the track, picking up speed as it went. Oh the relief! Yay! This is fun!

In the truck on the way to Jonathan's game I figured I'd call the pharmacy to tell them my plan and see if they could get it ready super quick so we could pick it up ASAP on our way to Jonathan's game. We were already running late for the away game and were going to have to detour to the pharmacy all at around 5:30 pm.

I placed the call. I ended up on hold for approximately 25 minutes. The pharmacy is actually within view when they finally pick up. They have been slammed, they say. Yes they can try, they say. I hang up as I'm literally dropped off at the front door.

Fun! A twist. A curve!

I run in prepared to text the husband to drive to the window if the line was too long. However, the store is empty! There is no one in line. I walk to the counter. I briefly say who I am to the guy who I'd just gotten off the phone with, he hurries to count out 8 pills and $75 later I'm on my way!

Ah. Another descent. A chance to breathe at the bottom. And while I can see the next incline up ahead, I have time to prepare myself now.... Whew!

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Epilogue

The weekend was full of tension and anxiety as I carried the weight of unfinished business. But I still had several commitments that had to be seen to and that I had to be present for even though I prefer to finish one task before starting another.

All the commitments ended up being nice distractions though. I sat with an old FB/new face-to-face friend at the game and got to know her better. I didn't think once about the medication issue while she entertained me with her bubbly, positive personality.

I managed to make it through worship team practice Saturday morning after confessing my feeling of heaviness and having a good cry in the bathroom after the prayer circle. And I didn't think about it once during the rest of practice as I concentrated hard on hopefully hiding the fact that I really can't sing. (I have a willing spirit though, so at least there's that. And supposedly God likes to use the most unlikely characters so I figure I'd give him a really good challenge. Don't want him getting bored or anything.)

When my husband asked that morning, oh, are we going to that dinner tonight, and I texted my dad to watch Austin, and he said yes. That was cool. And then when we got dressed later, and I asked my dad to document us being all dressed up, and then I posted it on Facebook and people showed up to boost my self esteem by liking and complimenting it, that was a REALLY decent distraction.

And then Sunday with it's busyness of worship team, making pies for the teen's birthday, and hosting family dinner that night totally filled the day so I had zero time to fret about the med until bed that night.

And then of course, Monday (and Tuesday). The beauty of those two days is that while I still had to make phone calls and emails, it I felt like I had everyone at the pharmacy, doctor's office, and insurance company all finally working together to get this done. By Tuesday afternoon, I got the a text AND a call that I was originally expecting that the med was filled and was zero dollars.

But when I went to pick it up, the gal at the pharmacy window said, "I"m sorry, but our system is down, and I can't sell you any meds." Uhh....

But no worries! The pharmacist came running over when she heard Austin's name, they had a quick pow wow, she opened the drawer and tossed his med into it while calling "Your the exception!"

Oh to be the *exception*! My heart soared as I pulled out of the parking lot. I'm the exception! I couldn't stop grinning (and wanting to cry a little).

The rollercoaster car zoomed into the loading station and screeched to a halt. What a high that ride was!

Austin Stories and What Not

I don't even know where to begin. I have a couple little Austin stories I want to tell you, but from Friday until yesterday, I have been on a freaking emotional rollercoaster trying to do life. And I'm pretty sure it's because, well...boys close your ears, (whispers) I ovulated over the weekend.

That's some serious hormonal shidoobies, let me tell ya. Anyhoo. Now that my body is back to "normal" (ha, ha, as if...), I need to tell you about Austin's little thing he did in the car on the way home from PCH the other day.

As you know, Austin does this houdini thing getting his head off the headrest. I mean, if I tilt the chair back a bit, which I always do, he has to work kinda hard to pull his head forward against the neck brace and past the curve of the headrest in order to get it stuck leaning over on his arm. I really don't know how or why he does it, but it's his favorite thing to do, especially when I'm driving the 10.

So we were tooling home like normal from the hospital, and I glance in the the mirror just in time to see him pulling his head forward. And I swear...WE LOCK EYES.

I immediately say, "Don't you do it" in my most threatening, glaring mom voice.

And he immediately gets a crap eatin' grin on his face as he pushes his head further forward.

So I change my tone and encouragingly, sing-song "Get your head up! Get it up! You can do it!" all the while having one eye on the road and one eye in the rear view mirror. (Mom's have this amazing talent, you know). But he drops his head past the headrest and onto his arm anyway.

So I say, "Well, that's your fault! You did that! Now you're stuck and if you can't breathe, well that's on you!" (Ya'll know if I really thought he couldn't breathe I'd exit immediately and help him right?! Stay with me here....)

He just ignores me about getting his head up and is now watching his show.

So I go back to driving regular, you know, with both eyes on the road. But I can hear him starting to make fussing noises (which tells me he's breathing...), so I say, "You can fix that. Just get your head up....etc..." And I proceed to continue down the highway yammering at him while I am distracted for a minute by the, well TRAFFIC and crazy drivers.

So then I realize, huh, I haven't heard any whiny, screamy noises for a bit so I glance in the rearview mirror, and wouldn't you know HIS HEAD IS BACK UP ON THE FREAKING HEADREST, and he's just chill watching his show like, no big!

And I'm like, "I gotta tell somebody!" So now, you've been told.

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Ok, what's next. Ah yes. Austin, my very best friend now because we spent ALL of Fall break together since husband traveled some and the nurse, we finally got, was out sick. 

I even asked Austin, "Are you my best friend?", and he turned his head up to me with a grin and vocalized "uh huh." So there you have it.

I kept seeing posts of all the moms taking their kids hiking and stuff for Fall break and we already did *Disneyland so I figured, heck, I'll take Austin hiking! The weather is pretty nice, and I've been meaning to visit the "accessible" trail that the City of Buckeye touted a while back at Skyline Regional Park.

The plan was to go Thursday morning, but alas, I ended up being stuck in the house all day waiting for Fedex to pick up Austin's lovely urine sample (hee, hee) that I so carefully collected over the past two days. (By the way, Austin is ok with me telling y'all about this because in a house full of boys, peeing and pooping is hilarious.)

So Friday, I loaded Austin in the wheelchair van for a jaunt down to Buckeye proper. My sister-in-law and her four kids followed us there which was super cool, too. It was about a 40 minute drive.

When we arrived, I jumped out of the van to go look at the map. The "accessible" trail looked to be a series of loops at the base of the hills. We unloaded ALL the stuff, made our way across the bridge, (past the grumpy old troll, through the big, green forest - sorry for a minute I was channeling Dora the Explorer), and to the "trail head".

Well we could pretty much see the entire thing from where we were standing, but we came all this way, we are going to do it.

I started pushing Austin's 100+lb chair and his self up the "slight" incline.

Sheesh. No one in a wheelchair is going to do that on their own! My calves and butt were burning! And the surface was *kinda* smooth. It was probably a stabilized decomposed granite or stabilized crushed stone (if I remember the terms correctly from my landscape architecture days....)

Wow. Now I know that while that surface might be accessible on a level path, add an incline and you're in for some work and will need help! But we pushed forward and wound our way back and forth through the loops reading some of the interpretive signage as we went.

But it didn't take that long, like maybe 20 minutes, and before you knew it, we were done. Kind of been there, done that kind of thing. So the trip driving there was twice as long as the actual "hike".

I'm glad we went though. I can cross it off Austin's bucket list. I took a few Go Pro videos (holding the phone camera behind Austin's head). Some times he sounded like he hated the experience, and sometimes he was just tolerating it, and sometimes, like on the bumpiest part, he seemed to enjoy it. Go figure. But you can only do the shakin' baby thing for so long pushing the wheelchair. So I was done.

Plus the second to the youngest of our crew had pretty much finished his popcorn.

So yeah, WE were done. 😀

We let a rock hold the camera to take our picture. 
It did a pretty good job.

Three Birds and Hand Sanitizer

I know all 5 of my readers/friends/family are waiting with bated breath to find out the ending to this 24 hour urine collection saga. And really the whole collection thing was easy, breezy. Just waiting on Fedex to fetch the little box tomorrow.

It's the driving two days in a row to Phoenix Children's down the 10 that's the real story here.

And I should insert into this story now, the real brilliance of me. I scheduled this two day Foley insert and extraction event to coincide with another appointment today that I had already scheduled with GI a couple months ago plus I planned on getting quick labs needed for Neurology. I was going to kill 3 birds today all between the hours of 11:00 and 4:00!

So like yesterday, I got us out the door with the extra 15 minutes built in. Thankfully, for two days in a row now, there have been no last minute emergencies like spills, leaks, or well, gagging and puking. Those are the usual delays, and like I said, Austin has really held it together these last two mornings for me, and we have been right on schedule. Kudos to Austin.

And as for pump alarms? None. The thing chugged along perfectly all the way there and back.

Did Austin try to get his head off the headrest and stuck on his arm? Well...yes. But I caught him doing it in the first 2 minutes on the way to the gas station so I leaned his chair back a tiny bit further to give him a little more challenge.

So all that was left for the drive was to turn on the podcast and get cruising.

Have you ever driven the 10? It makes you feel alive! Only constant brushes with death can make you feel that way. What a thrill! What a rush! Weeeee!

We only passed one crash which used up only 5 minutes of my buffer so we arrived with time to spare. But lordy, I was sweating! I noticed this right away after pulling into the HC space and digging for the placard. I noticed because I was not smelling so fresh. So apparently in my rush to stay on schedule, I missed that all important step of applying antiperspirant/deoderant.

Well y'all, I'm a problem solver so I started looking in all the van compartments for a solution. A wet wipe, breath spray, essential oil...anything. And then I found my trusty hand sanitizer in the door pocket.

Let me tell you about hand sanitizer for armpits in a pinch. First of all, it works. Second of all, I know this because I spent an entire weekend, pregnant with Austin, with two little boys in a tent, camping with no shower, at Yellowstone National Park (husband joined a day later) and no deodorant. And this wasn't because I was afraid of attracting bears. It was because I forgot to pack it.

So, yeah, it works.

Onward and upward, we got to the Nephrology appointment to have poor Austin relieved of the invasive tube that was stuck up his...well, you know what. I thanked the gal for being quick because now I might have time for jalapeño poppers in the cafeteria! So I wheeled Austin to the main building.

I sign in at the desk. "Birth date", she asks. "Last name", she asks. She's searching her screen while tentatively sliding the visitor badge towards me.

"Don't tell me," I joke, "it's at the Avondale location...ha, ha, ha..." I laugh because I'm super funny.

"Actually," she says, "yes."

Holy, shidoobies! No time for poppers now! I glance at the clock and make quick calculations. If I hurry, I can still run up to labs and if there is no line, I can get the blood work done, get back to out to the van, and down the 10 to Avondale in time for his appt.

So the rest of the story is pretty boring. There's miraculously no line, we get the labs done in record time, get back out to the van which was parked on the 1st floor of the garage, zip back down the 10 to Avondale all with 30 minutes to spare before we have to check in.

No worries, y'all. I still think I'm brilliant. Just a brilliant person who needs put on deodorant and look more closely at the calendar before scheduling back to back to back appointments. That's all. 😄

Words and Reason, Of Course

Woo hoo! Austin and I were out the door right on time this morning. I had timed the getting-ready-routine perfectly so that we were leaving 15 minutes early for the hour drive to Phoenix Children's Hospital as planned. (If you follow his Facebook page, you know I get to collect urine for the next 24 hours from a Foley bag. Awesome!)

Anyhoo, I always like to allow an extra 15-20 minutes when I know I'll be traveling I-10. It's just too unpredictable.

However, no sooner had I driven two doors down the street from the house, Austin's food pump started to alarm. Well, no worries. I had that extra time budgeted in. I just pulled to the curb and took about 10 minutes to get the sucker pumping food again. And off we went.

I got to the end of the street, made a right, and then a left at the end of that street. As we were passing the school, I glanced in the mirror and Austin's heavy head, even with his Hensinger head support collar,  had already fallen forward off his headrest and was resting on his arm. 

What the...?! I pulled into the school parking lot and quickly put his head back in position, reclined his chair a bit more so that it would be harder to fall forward, jumped back into the driver seat, made a U turn, and was back on the road. 

At the end of the street we made a left and stopped at the light at the entrance to the subdivision. Thankfully, it was quick, and I was off the mark in no time, making a sweet left onto the parkway. 

Dee doo, dee doo, dee doo...

Seriously...?! His pump was alarming again. That's it. I hit the hazard lights, pulled off onto the shoulder and into the gravel, waited for all the 65 mph traffic to pass, got out of the van, yanked open the side door (it actually doesn't "yank" because its one of those electric, automatic doors...but in my mind, I YANKED it), and shut down that dang pump. 

Sorry Austin. But mommy's out of buffer time so no food for at least an hour, dude. 

He's cool. He's got his Diego and Dora movie that's been on repeat in the van since he was 3 years old. We proceed in a cautious manner to merge back onto the road.

The podcast is delightfully entertaining as I am now zipping down the 303 at the comfortable speed of 9 over. For the most part, I'm just letting the cruise control merrily do it's job as it adjusts to the speeds in front of me. If I feel it putting on the brakes too much, I just check over my shoulder, and blinker my way around the slower traffic.

I peek at Austin in the rearview mirror. He's still cool...although starting to look a little wiggly, rotating his head back and forth and not just watching his movie.

As we finally leave the 303 and merge with the 10, Austin has gone from silently wiggly to full blown "I'm uncomfortable" or "something ain't right" mode which means major ear piercing, periodic whiny/screamy noises. 

Which are my favorite.

I debated whether or not to exit the 10 since I was already in the HOV lane and clipping along nicely. We were about 30 minutes out from PCH assuming all went to plan at this point. I assessed him in the rear view mirror and decided there wasn't much I could really adjust at this point and that I'd try to use my words and reason with him instead of my usual gritting teeth and bearing it. 

I turned off my podcast and took a deep breath:

"Austin, I know something's wrong right now, and you're trying your best to tell me what it is, but mommy is driving right now so I can't help you at this time. So I need you to try to calm down and be quiet if you can because your yelling hurts mommy's ears. I will be able to help you in about 30 minutes, etc..." 

This reasoning continued for the next 10 minutes or so. I went into every detail of talking about what might be wrong and how I would fix it when we arrived, but that right now I couldn't because I was driving. 

And then I stopped talking because I realized he had stopped whining! 

It was as if he understood all my words, as if he understood that 30 minutes was a bearable time limit that he could stand, and as if he understood my predicament and so he was going to suck it up and take one for the team. I don't know. But it freaking worked! Heck. Maybe I bored him to silence because of my droning on and on. LOL.

But it worked. And I tried it on the way home when we were 30 minutes out as he was fussing because he had gotten his stinkin' head off the headrest again. (Seriously, ya'll. He's a little houdini with that headrest.) 

So I told him, "I saw what you did." And "why don't you try to get your head back up, etc...." (I swear he tried at least two times to get his head back on the headrest with a quirky smile after trying each time.) 

So, I guess I don't know what to think. Maybe he knows more than he lets on. Maybe someday someone will teach him how to use some kind of communication device, and we will find out what's been going on in that noggin of his. Maybe he's just milking this non verbal thing for all its worth because he gets to watch his shows all day. 

Oh my gosh. I bet that's it!

I Wish, I Wish, I Wish...

It's fall break for the medically complex one.

I'm in the next room while he's watching his "shows": any one of Blue's Clues, Go Diego, or Dora the Explorer. I can tell by the cadence right now and the exclamation of "Baby Jaguar" every now and then that I last left it on Diego.

Austin is "talking" to the show. He is constantly humming or moaning at the voices. Every now and then a giggle, and every now and then a whine. My favorite sound is a bold UH, UH, UH with emphasizing shoulder shrugs. But I'm not always sure what triggers what. I don't really know what he's trying to say.

This is not how I thought his almost 9 years would be going. One of the many things you do as a parent is teach. You pass on information. You show them how things work or what to do, how to respond. And little by little by mimicking you, they learn to do the things. They gradually become little adults. It's so very rewarding when they respond to your efforts and start to become independent people, exploring and learning on their own.

But with Austin, you have to look really hard to see the progress. I don't really know if I've "taught" him anything because its very difficult to tell if he's learning. You don't really know if he gets it. Specifically because his speech is not our speech and his movements are barely controlled.

So unfortunately, I tend to assume he doesn't get it. Because wouldn't he be really upset that we weren't understanding him if he was truly trying to communicate an answer to a question or a desire we had not offered to fulfill? But no, he mostly just smiles and laughs at questions. He seems to just be happy you are talking TO him instead of over him.

I tried and tried and tried to work on communication when he was younger. And I know they still do at school. And they act like it's working, albeit slowly. But at home, I just finally gave up. Which I kinda had to for my own self preservation. The disappointment was too much. I had to let go of all the typical expectations in order to live.

But oh, today during fall break, as I stand over him and run my fingers down his body from his head to his toes. I just wish I could interest him in something, anything besides his shows. I just wish I could show him a toy or set it in front of him and he would want to know about it, touch it, engage with it. I wish I could direct his hand movements, and he would copy what I showed him. I wish I could make a face, and he would try to make the face back at me. I wish I could reach for him, and he'd reach back.

Oh my heart today. I know it's a passing moment of sadness in the midst of the ever present surrender and acceptance that I try to practice daily now.

But oh today, I wish, I wish, I wish...

Image Source

A Montana Summer: Day 13

It's crazy. I'm finally at a point in this vacation where I yearned to be. Only took 13 days.

The house is completely empty of people except for Austin who is still sleeping soundly this morning. I'm lying on the couch doing exactly nothing except staring out the windows at the gray sky and trees with flittering leaves in the foreground. Another big window contains the same gray sky with a gray lake rippling left to right with hazy purple hills on the other side. I can hear the trucks and cars in the distance on the highway up behind the house. It's like soothing waves of the ocean. The cheap decorative clock on the wall over my head has a lovely, just loud enough, tick tock that adds to the monotonous, droning sounds.

It's the perfect conditions for thinking or writing. I always heard of people escaping to be alone in a quiet place to write. I always wanted to have a chance to do that. I'm pretty ok being alone. And I don't mind being alone with my thoughts.

But I've got to learn how to be quiet and alone when I'm not the perfect atmosphere as I am now. Being quiet and alone are the only ways to organize my thoughts. To have a chance to let my mind wander without distractions.

And it's been building. I thought maybe I don't need to write anymore. And maybe I don't. Maybe it s just this setting that I imagined if I were a writer, it's how I saw myself doing it. However, the longer I go thinking without writing, the more distressed I feel and become. I need the outlet. And I enjoy the feedback if I get lucky to get any.

So even after this little vacation where conditions seem perfect today, I need to figure out when conditions are not perfect, but instead normal, how to create a gray quiet morning in my mind. I need to learn how to imagine a lulling backdrop. I need to figure out how to escape and be alone even when activity is around or chores and projects are calling me.

So what am I thinking or wanting to write about? I've asked myself this over and over while being too busy to actually do either of them, and also thinking maybe I don't have anything I need to write about anymore.

But the more I consider it, I feel like I'd really love to explore where I am spiritually or philosophically, that is, if I am anywhere at this point. That's what I think about the most these days. I'd love to immerse myself in remembering all the monumental turning points where I thought -- this is something, that was something. And ask now, what that something? Or did I just force it to be something?

I know the memories will only be impressions at this point, but impressions are what shapes us and gives the framework to who we are. I'd like to sit with those impressions and thoughts. I'd like to see if I can put in words for myself who I am now and how I got here.

For example, if I were to start today, perhaps I'd start with the memory of when I "walked down the aisle" in church to "become a Christian". I put those in quotes because those phrases now seem so churchy. I mean, unless you grew up with that vocabulary, who would understand what either of them mean?

So there. I think I'd start with that story the next time I find the quiet.

But now I must go get Mr. Austin his meds and get his day started. We are a little off schedule here in Montana. The late sunsets make us think it's much earlier than it is. So we stay up quite late and Austin sleeps in late. The mornings really are the perfect time for me to think the thoughts if I can figure out how to be alone. I got lucky today.

A Montana Summer: Day 7

My whole goal for this summer's vacation was to become completely and utterly bored. Sitting by the lake, staring into space bored. Bored out of my mind bored.

But here I am, one week into this thing, and I have barely sat down since I've arrived. Instead of utterly bored, I'm utterly exhausted. But in a good way and by choice, I suppose.

My husband asks me, "Are you pregnant? Why do you seem like you are nesting?!"

My middle son tells me repeatedly, "Why are you working so hard? Just sit down and relax!"

Well people, I can't relax until I have my space the way I want it. I need unfamiliar spaces to be organized before I can sit back and relax. I also like to stay on top of cleaning clothes and surfaces since I know in a few weeks I'll be packing it all up again and leaving. It's just my way of being I guess.

Now don't get me wrong, I've laid in the sun on the dock for a half hour here and there; I've sat on the deck watching the sunset; I've played a couple of card games. I plan to work a puzzle or two. I plan to  read or listen to a book or two.

But mostly I've done projects and chores thinking once I get them done, I'll be able to immerse myself in boredom.

Maybe. We'll see.

A Montana Summer: Day 2

The AI in my van asking if I'd like to take a break. She was quite the nag. Dad and I nicknamed her "mother". That's what my kids like to call me when they hit their max nag quota from me. LOL.

Well, hello again. It's been a while.

I thought I'd give writing a go again for a bit. We are on a summer adventure in Montana. It was so successful last year traveling with Austin, that we thought we'd do it again this summer. So I thought maybe writing a few words about it here and there might be fun and, of course, therapeutic. Because let's face it, traveling in close quarters with family on "vacation" is not always idyllic.

Let's just go back a few days to when we left the house to embark on an 18 hour road trip to our destination, husband driving his truck, and me driving Austin's wheelchair van. My dad and middle son along for the ride and to help drive.

I decided to let my dad have the first couple hours because I had, per usual, started packing late and stayed up late to finish. Not the best plan if you are going to drive 9.5 hours the next day. I mean, I have my list, of course so I thought I could just zip down it and throw stuff together since I've found if I start too early, I obsess over what I've already packed and worry too much. So I procrastinate all day until I just can't put it off any longer. It usually works out.

So dad was driving. I tried to settle in for a short nap so I could take over after a while. Once we got on the highway, I settled in and closed my eyes. Or tried. I couldn't just keep them closed. I kept feeling the van's movement: a steering correction here, a braking there. So I'd peek an eye open to check what was going on.

Let's just say, apparently I'm a control freak. As a guy, of course dad was driving way too close to Patrick's truck (or any other car that got between us) for my comfort, hence the braking. Plus he was learning the subtleties of a new-to-him vehicle, thus the steering corrections. I just couldn't. I spent more time watching the road with one eye open than resting/sleeping. I was seriously having major anxiety. I finally texted the teen riding with the hubs to pull off at the next exit. Dad and I were going to switch places before I died of heart failure.

So remember how I packed at the last minute? And I rarely forget anything because I have a list?

Well we arrived in a short 12 hours to our hotel in Provo, Utah. The first job after brining everything in is to get Austin ready for bed: changed, medicated, etc.

I've had a little plastic box that had a green lid with a handle that a friend bought for me after Austin was born to keep some of his essentials in. I've taken that box with me religiously ever since: on vacations, to his hospice stays, to his hospital stays. It is my security blanket. It has his breathing inhalers, special skin creams, 2x2's, tape, tooth care, pulse ox, etc.

And it was not with us. It was sitting at home 9.5 hours ways at the end of my bed. Overwhelmed with the day's travel, all I could do at that point was sit down and stare into the room in panic!

But once the shock of not having it wore off, we realized that we could make do for a couple nights with improvising some of the supplies from other items we brought, and since he's been so healthy lung-wise for so long, we could probably get away without the inhalers for a couple nights until we could get the box mailed to us.

Fortunately I have a good friend looking out for our house while we are gone, who agreed at first to overnight the box, and then once we got our brains working again, retrieved the box for my brother to pick up since they weren't planning to leave until the next day and would literally be meeting us in Montana before any overnight mail could get to us.

So it all worked out. As usual. And we arrived at our destination in Montana after 12 more hours of travel (9.5 driving) the next day. The teen helped drive an hour here and there when I just couldn't keep my eyes open anymore even after 5 hour energy drinks. And we made it in once piece even with the usual friction between spouses who each think they know it all and need to be in control.

In fact, that might need to be my next story. Because I may need to justify in writing how I'm always right. Ha ha.

He Pulled Me Up by Barbara Waters Scott

Even though I received a scholarship and achieved the Dean's list with all A's, I dropped out of college on the first day of Easter vacation. It was also my twenty-first birthday and the middle of my junior year. My parents gave me a surprise birthday party, trying to cheer me up, but I was crying inside. Outwardly I had reached the point of no emotion. My condition especially upset my mother, who said when I told her about wanting to end my life, "The good Lord won't let you do a thing like that. He gave you life. It is His right to take it away."

My mother suffered a lot because of me. I often told her that I felt like the "living dead", that there was no meaning to life, that within a few months I would either be in a mental institution or a grave. But Mother kept saying, "I know everything will work out for the best. The Lord is letting this happen for a purpose."

Even though I was deeply depressed, I knew I was a Christian. The summer before I dropped out of school, my steady boyfriend rejected me for another girl. Hate and bitterness consumed me. It was then that I read the paperback Peace With God by Billy Graham. Not long afterward, I watched a televised crusade, which ended in my accepting Christ as Savior.

But I didn't make Jesus my Lord. When I returned to college, I returned to my old life—seeking pleasure and recognition. This lifestyle clashed with my newfound spiritual insight and resulted in a deep depression. I could not concentrate on my studies and withdrew from all relationships. It was then I decided to leave school until I could resolve my conflicts.

My mother had a friend who knew the supervisor of the psychiatric ward at the county hospital. Since the doctors were residents who charged a minimal fee, many people were on the waiting list. I was told that the fastest way for me to get help was to enter the hospital and later be put on outpatient care. Me? In a psychiatric ward? The very thought was humiliating. But I was desperate—I hadn't stopped thinking about taking my life, even though I hadn't actually harmed myself. I was so afraid of myself that I consented to admission. The doctor assured me the ward was not a "funny farm" and the patients were no different in outward appearance than anyone who might be seen in a department store crowd.

After the ward door was locked behind me, I realized that he had failed to tell me how emotionally disturbed the patients really were. One pretty sixteen-year-old girl, who felt her parents had given her everything but love, had tried to leap out a window. An older woman, who bore the scars of deep razor cuts on her throat and wrists, told me that her children had found her just in time. She had been recently divorced by a man whom she loved very much and who left her for another woman after thirty years of marriage. The worst case I saw while I was there was a former school teacher who had shot herself in the arm while attempting suicide. She entered in a catatonic state, not realizing who or where she was. She sat immobile and never spoke a word.

These were the kind of people that I had heard existed, but they never seemed real. Now I realized that this situation could happen to anyone. I was thankful that I had walked in instead of being carried. I also understood that my suffering was not as severe in comparison, as I had thought it was.

My doctor confessed that he could not work any miracles, that I was the one who had to do the changing if anything was to change, that I had a "right to my feelings". After I confided in him, I felt some relief, but I knew that I should never become dependent upon him.

When he told me the last week in July that he was taking a vacation for a month, my heart sank. I still hadn't stopped contemplating suicide. Although I had been seeing the doctor on an outpatient basis for several weeks and attending the last six weeks of summer school, I wasn't sure I wanted to return to school in the fall, because of the fear I might have to drop out again.

Then I received a phone call from Dan, a friend from college. He asked me for a date. I accepted. I had always enjoyed Dan's company. He never seemed to worry about anything and was consistently in a happy mood.

I felt I could trust Dan, so I confided in him. He told me that he had undergone a similar experience. He said that like many freshmen he came to college for fun. After his sophomore year, he began wondering what the future held for him. He realized he was unhappy as a business major, but he didn't want to "change horses in the middle of the stream." He went through a period of depression, also. Finally, a friend took an interest in him, and they talked a lot about the Christian life. Dan had considered himself a Christian, but he had never comprehended what completely surrendering one's life to Christ could do. This friend told him about a "quiet time", an early morning period of Bible study and prayer. Dan said that just fifteen minutes a day were valuable enough to give him the personal inspiration he needed. He said that the Bible, "God's inspired word," was actually the revelation of God Himself. Then Dan suggested that I try reading it on a regular basis.

So I started waking up fifteen minutes earlier each day. Often I had to force myself to get up, because I began making up excuses why that extra fifteen minutes sleep was necessary. Arising early and spending the time in fellowship with God was worthwhile. My mind gradually began to clear. "Principles in this book actually make sense. They can apply to me here and now," I thought.

One verse in particular was meaningful. I read Proverbs 3:5-6: "Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight." I realized I had never completely trusted the Lord enough to turn all areas of my life, including my problems, over to Him. I recalled as analogous occurrence. After trying to rise on water skis for two summers, I finally succeeded. I understood at last that the boat must pull me up and that I had been trying to pull up by my own power. As I remembered, I prayed, "Lord, You are like that boat. All the time I've been resisting You and trying to make it on my own. Please "pull me out of the water!" Suddenly I experienced a tremendous sense of relief.

Truly surrendering myself to the Lord's will made all the difference in my life. I could actually live life for the first time. I found pleasure in simple things—a quiet sunrise, a glorious sunset. My perception of my surroundings deepened and enabled me to write poetry. I could share Christ in a natural, relaxed way. Christ's Spirit caused me to care more about others and their needs. I found a "spiritual family" in a local church. My life took on new meaning and purpose.

Although I will never completely understand why this experience happened, to me, it definitely made me depend upon the Lord. The psychiatrist could only enable me to see that I needed to change. I had to do the changing, and I did it in God's power. I know now that I needed Him to pull me up, to bring me to my feet so that I could ride the waves. With this knowledge, I can face whatever obstacles may be ahead, whatever course is laid for me.

--------------

February 29, 1980

Mr. Roger C. Palms, Editor
Decision Magazine
1300 Harmon Place
Minneapolis, Minnesota 55403

Dear Sir,

The enclosed manuscript is the result of many hours of revising and rewriting* Hopefully, the work spent on my English degree at Texas Christian University has contributed to a well-written copy.

The story itself has been ten years in the offing. During that time period I represented my city in the state final of the Miss America Pageant, taught high school, married, and had two children. My husband Lyndell and I are presently members of MacArthur Blvd. Baptist Church in Irving, where he is a deacon.

My goal in submitting this testimony is that the Lord Jesus be glorified. He is the one who delivered me and who is blessing my life.

Yours in Christ,

Barbara Scott

Gotta Love Being Triggered

I should have stayed off social media today. In back to back posts on my Facebook feed, I read about one woman's reasons for changing her stance on abortion, and another woman's account of accidentally starving her first baby based on the premise "Breast is Best".

Both accounts triggered memories of Austin's Birth Story even though circumstances in the second story were completely different.

-----------------

You see, when my main doc got Austin's 20 week ultrasound results, we were told to meet with a particular obstetrician who dealt with complicated pregnancies. I just assumed something minor was wrong, and they would just be monitoring me more closely since I was almost 40.

However, apparently it was his job to give people the "really" bad news. It was his job to describe all the deformities he could already see and the challenges that would mean. It was also his job to describe all of the potential, and probable according to him, mental and physical challenges the child would have as well as the burden we would have to care for this child. It was his job to present us with all the bad things that would probably happen if we continued the pregnancy. It was his job to scare the hell out of us and convince us to have an abortion. And he would be the one to perform that abortion.

I remember being numb with shock. I remember staring at a family photo of five or six sitting on the shelf behind him thinking he could talk about killing babies without blinking an eye.

And I remember thinking, yes, I have a way out of this nightmare that we were being presented with. I have a way out of what I initially thought would be the shame in having a deformed child that would interrupt our perfectly "normal" family unit. I have a way out of a most unknown of all unknowns, caring for a medically complex child for the rest of my life.

The next moments were critical. My world pivoted and spun. I had no idea what to decide or say. And I'm not sure what my husband thought either because he was in shock as well. I don't remember if we even looked at each other.

But I do remember doing one thing. I asked the doc what the abortion would entail. And he obliged me with an answer. He began to describe in detail what would happen.

With each new piece of information about the "procedure" I began to feel more and more nauseous. Finally, I couldn't take any more information, I pushed back my chair and demanded to leave.

Everything in me wanted to get rid of what sounded like a mistake of a human being inside me while at the same time everything in me screamed, I can't be responsible for killing someone, I can't, I can't, I can't!

So we left in a hurry amidst stumbling, awkward goodbyes. The doctor told me I needed to decide soon within the next couple days because I was already 20 weeks. If I waited too long, they couldn't do it.

We drove home in silence and the rest is history.

---------------

After Austin was born, the NICU doctor repeatedly and defiantly tried to convince us to take Austin home on what they called "comfort care". It was basically hospice status which meant to expect death within a few days. We were supposed to just hold him and give him pain meds until he passed. We were not supposed to offer him a drop of food or water. We were supposed to starve him to death.

And my initial thought again was, yes, I have a second chance and a way out of this crazy mess. I have official permission and a legitimate reason to kill my baby.

But again the longer I imagined trying to do what she wanted, the more the thought sickened me (and apparently my husband too, who became Austin's primary advocate since I was on morphine after an emergency pelvic surgery that followed Austin's birth). I had just enough awareness to know and hear what was going on, but not enough to make emphatic, declarative decisions.

But I did know I couldn't go home and not try to feed my baby. I can't be responsible for killing someone, I can't, I can't, I can't.

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?

-----------------

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