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.

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

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...

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What Is A Special-Needs Mom's Purpose In Life?

Last night I had the privilege of having dinner with another special-needs mom. I met this mom briefly in passing maybe a couple years ago when her son's therapy appointment was scheduled after my son's. The therapist, turned friend, introduced us, and I'm sure I smiled, nodded and politely said 'hi' in my hurry to leave. But let's face it, usually when I'm introduced to another mom there, I don't internalize the meeting because I just don't have time for strangers in my head or heart these days. And besides that, most of this therapist's clients fly in and out from around the country (or world) as we once did, and I was sure I would never see this other mom again.

Well this therapist/friend must have mentioned my blog to this mom as I know she had done time to time with other clients. I'm flattered that she does this and so grateful because it might be theraputic to unload your thoughts on "paper", but it's a whole nother level of therapy to have your thoughts acknowledged and appreciated by others*. 

Because of my blog and Facebook posts, I got to know this mom a little here and there through her comments on those posts as well as private messaging on and off. However, over dinner, I came to find out last night she might be my number one fan, that she reads just about everything I write in my blog and on Austin's Facebook page, and that because of that she had shed tears during our trauma with Austin last year being caught up in our story and experiencing it right along with us. It was humbling to think a "stranger" could be so attached to Austin and me in that way.

But its not surprising, I guess. At least not with the many opportunities we have to share our stories on the internet and in so many formats. I've been caught up in other mom's stories and their kid's lives whether I've communicated with them or not, inspired by those mom's determination and dedication, amazed at their kid's incremental accomplishments, mourning over setbacks, occasionally envious of those mom's seeming ability to do this better than me, and shedding my own tears if their kid's life ended too soon.

And I think that's why this mom and I could meet up and go to dinner together last night as if we'd know each other forever. When we connect with someone who is going down a similar path, we speak their language and we both "get it". And to have unspoken permission to discuss openly our individual trials and grievances and confess our fears to someone who "gets it" can be like hitting a reset button. It reinforces the fact that we aren't alone, and we have a chance to remind each other what our purpose in life is right now, at this moment, in this life situation. We have a fleeting momentary mission that has been laid at our feet, that we don't have to feel trapped (as I've felt in the past), that we have a choice whether or not to accept and surrender to that purpose.

And that purpose is not to be their doctor, to diagnose causes or to medically explain this or that although we will continue to seek out the best and brightest just in case something is missed. That purpose is not to be their nurse or caregiver, to feed and diaper, to administer meds and clean their spaces and equipment although we will continue to fight for the most helpful equipment and the best medications that might ease their conditions. That purpose is not to be their therapist, to teach and train these frail frustrating little bodies to accomplish the smallest tasks even though we will exhaust ourselves researching and trying every new intervention and therapy that comes along, some beneficial and some not. That purpose is not to start a foundation on behalf of our kid's rare disease or diagnosis, or to sponsor events to raise awareness. That purpose is not to host a Facebook group to connect other special-need's mom's, or to start a blog or write a blog post that might help other mom's not feel alone. These can all be good and noble things that we do and can certainly keep us busy and distracted, but they are not our purpose.

Our purpose and mission in life is one we have in common with all moms, not just the special-needs kind. Our purpose, if we so choose, is to accept and surrender to this gift in front of us, to attempt to make a difference in this one life, this one soul, to make sure this one light feels divine, unconditional love. Right now, in this moment. 

That's our purpose. That's our mission.

(Thank you, friend, for helping remind me of this last night! And don't be surprised if my next couple of blog posts aren't inspired by some of our discussion. Your acknowledgement that I seem somewhat at peace at this point on the journey has me analyzing how exactly did I finally get to this point of acceptance and surrender. And while I'll reserve the right to leave room just in case that changes (nothing is stagnant), it might be nice to document some of the things that helped me along the way, in case it can help someone else.)

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*I feel so lucky to live in this day and age of social media when you can hit "publish" and have our thoughts read and shared within minutes or hours. I think of the "good ole' days" when we might write in our diary or journal and its not until we're dead that someone accidentally discovers our thoughts on life situations or our stories. These days we have a chance to share those thoughts and stories with the world at our leisure for better or worse, hopefully for better, I suppose. So remember, Sharing Is Caring!

Where Do I Go From Here?

I sat next to Austin's wheelchair in the clinic waiting room intently focused on him and his needs. Or at least I was pretending to be. He was actually fine at the moment and didn't really need my attention, but "attending" to him has become my defense mechanism when we are in public.

Unfortunately, even though I write about being ok with the stares of strangers and being ok with questions about Austin, I still find myself avoiding those situations if at all possible. I avoid eye contact. I busy myself with "entertaining" Austin. I dig through the diaper bag. I adjust his harness. Or I just look at my phone, the ceiling, the floor. I do not make eye contact unless absolutely necessary.  And I don't know why because I really don't mind answering questions about his differences or letting children or adults try to interact with him. I want those things. I really do. 

However, deep down, I probably do know why. I'm still afraid of those instances when I catch someone staring or being curious, and I begin to smile or encourage an interaction, and they shy away instead. Somehow, when that happens I feel all the lovely rejection emotions for either myself or on behalf of Austin. Or I feel shame. I know. I mean there's nothing to be ashamed of. He's just a kid with a few medical challenges, none of them his fault. And of course, everyone says they aren't my fault either. So it can't be shame....

So there I was being all busy with Austin when a young mom bottle feeding her new baby plopped down on the bench next to me and started asking all the probing questions. I braced myself to be happy, enthusiastic, and positive. I mean this is who I want to be. Let's do this.

"How old is he...?"

"Does he have Downs or ....?"

"When did you find out about...?"

"Oh! That's when we found out too!..."

Wh...wait...what?

And that's when I came out of my little internal world of "all about me" and noticed for the first time the baby she was holding was a tiny newborn, probably a preemie, with Downs Syndrome. The young mom was in her teens.

I'd never seen a preemie up close before. I'd also never seen a newborn baby with Downs.

"...yeah, my mom is going to be here in a minute...she's helping me...my boyfriend won't even touch her yet..."

"Oh", I stammered. And as the gears in my brain slowly shifted away from me and my anxiety over being questioned about Austin, I realized this overly chatty young girl was looking for support from another mom who appeared to be surviving this special needs life. 

But I had no plan. My mind was spinning, searching for the right thing to say.

I asked if she was getting support services. She said yes. At some point, I warned her that she might experience a period of grief over unrealized expectations, and that it was ok and normal. She said she thought her boyfriend was experiencing grief. I assured her with the most confident smile I could muster that eventually all of this would feel very normal. That things wouldn't seem so daunting. I think I told her it took me 4-5 years to come to this point of acceptance. Not sure that was the best thing to mention.

Then her name was called at the front desk.

"Can you watch her for a minute?" she asked as she set the baby in a carseat and nudged her in front of me.

Caught off guard, I stuttered an "um...sure" and watched her go check in. She was so young, and yet already being handed a huge challenge in life, something I didn't experience until I was 40. She was just a baby herself, nervous, searching for hope...from me.

I stared at the baby in the carseat, so tiny, so innocent and beautiful, and beginning to fuss and cry just like any other typical baby. I spoke to her in my high, mommy voice trying to soothe and assure her she was going to be ok, that her mommy was coming back in a minute. I rocked her carseat with the toe of my shoe.

I thought about how young this mother was and how she was just at the beginning this journey. How much strength she would need to get through the next few months or next few years. How many tears she might shed. How scared she might be. How strong she was going to become as she advocated for her child's health, education, and acceptance.

This whole encounter was a wake up call I haven't been able to shake. While not always easy, caring for Austin has become my normal. So it makes me wonder what my role is in this special needs/medically complex world? After having been consumed with my own disappointment and grief for so long, and now that I'm finally coming out of that phase, do I have a bigger purpose? Do I even have time "to give back"? Do I want to?

I don't have these answers yet. I'm reluctant to jump into something just to be doing something. I guard my energy fiercely. I've even been thinking lately that I don't identify as much with other special needs moms. There was a time I lived and breathed every word other moms wrote about this life. But lately, I find myself impatient with the words they write. It was as if they were needed for a time, they served their purpose, and now will serve their purpose for someone else. But maybe not me anymore. I've actually been having sort of an identity crisis. 

So for now, I think I'll just try to be more aware of my surroundings especially in a clinic or hospital where I may be more likely to encounter someone looking for support. I'll try not to be afraid to make eye contact. And at minimum, whether in person or here on my blog, I can continue to share my story, and say with some degree of confidence, that I eventually perceived my situation as manageable.

I Am Not A Caregiver

She jolts awake to an ear piercing screech that sends shockwaves through her nervous system. Hoping its just a startle from a bad dream, she allows herself to start drifting back to sleep when another screech jars her system again. She lies there with her eyes wide open now waiting to see if it will continue.

It does. And now its becoming louder and more incessant, demanding. She huffs and sighs, flips back the covers, slowly rolls up to a sitting position on the edge of the bed and rests her feet on the floor. She reluctantly stands up and walks the 8-10 feet over to her son's bedside. He is six years old and still sleeps in their room because of his penchant for having seizures, choking on secretions, and his inability to reposition himself.

It's 2:00 am this time. Sometimes its 3:00 am or 4:00 am. But this time its 2:00 am, and on a night her husband is out of town. This is key to note because most of the time she will lie in bed and wait, knowing her husband, the true caregiver, will typically jump out of bed, multiple times in a night if necessary, to check on their son.

Her husband continues to get up until he figures out the problem whether their son just needs to be rolled over, suctioned, have a dry rag put under his face, a diaper change, or just comforted due to a seizure or bad dream. He does all this without complaining, and even though his sleep is interrupted and lost just like hers, he is able to lie back down and immediately start snoring. The next day he is business as usual even if tired.

She, on the other hand, once she has gotten up, especially if it takes several times to figure things out, will take 1-2 hours before she can eventually fall back to sleep. The next day she is often tired, resentful, and grumpy, often lashing out at family members for no reason. She might sleep all day leaving the care of her son to her husband, who has a home office, or the nurse if they have one scheduled.

Once she arrives at his beside, she proceeds to go through the motions, checking items off the list, trying to solve the problem as quickly as possible, knowing every minute counts if she hopes to accomplish anything the next day, even if it's just successfully getting out of bed and seeing to her son's basic needs.

But the screeching and crying doesn't stop. So as a last resort, they usually assume their son is in some kind of pain whether it be a headache from the hydrocephalus, soreness around his hips, some residual pain from having a seizure or choking, or from constipation. She trudges to the kitchen in a fit of angry tears to prepare a syringe of crushed ibuprofen and water.

Returning to her room, she pauses his food pump, administers the medication through his g-tube, and pushes "run" on the pump. She leaves the lamp on across the room in case she has to get up again, and slumps back into bed.

Everything within her wants to scream or throw something. Her mind fills with angry resentful thoughts regarding her life situation. She turns up the white noise app on her phone, puts a pillow over her head, and sobs.

"I am not a caregiver!" she laments.

She did not seek out this role. She does not have a special gifting or heart to care for the long term sick, the terminally ill, or those approaching death. She did not pursue a career as a nurse. She is not a trained therapist. She is not a doctor. At minimum she has a heart for the underdog, and that's about it.

This gig chose her, fell into her lap, and she hates it. And she hates that she hates it. She wants to feel "the calling" as some might refer to it. And on some days she thinks she feels it. But usually those are the good days, the easy days, the days she thinks she's got this. Those are the days she's met his needs successfully or came up with an out of the box solution to one of his challenges, or just left his care to her husband or nurse so that there was the appearance of ease.

Instead, most of the time, especially on the hard days, the beyond difficult days, she carries the heavy mantel of guilt full across her shoulders, the mantel of guilt for hating the caregiving role as opposed to the glorified superhero cape caregivers are normally attributed.

So unless being a caregiver has the minimal requirement of not running away...and she's at least met that (so far), she is NOT a caregiver and does not want to BE a caregiver.

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P.S. You might be thinking, "If she isn't a caregiver, then maybe she shouldn't have taken on the roles of wife or mom either." And you would be right. She barely succeeds in those roles too.

Beyond Difficult {Part 3 - You Know He's Complicated, Right?}

Beyond Difficult {Part 2}

They returned to the rental where their other two boys were waiting. They made Austin comfortable as best they could on the floor in the living room so he could be around the commotion even if he was sleeping.

There were no gifts to open, but only requests of Monkey Bread which was their Christmas morning tradition. Her husband had purchased the ingredients, but they had found out the oven was broken when they first arrived. She quickly googled "microwave monkey bread" on her phone and soon they were eating bowls of brown sugar and cinnamon soaked biscuit bites.

They found a pack of Uno cards and started a game. She kept glancing over at her son thinking since it was a couple hours past 6:00 pm, he would soon start fussing for meds or something. At least, she thought, he would start waking up. Or become less puffy.

The Uno game went on for awhile. Finally someone won and they could be done. She got up from the dining room table and went to sit by her son on the floor. She lifted his arm and it just flopped on the floor. She couldn't get a response from him even when she pried an eye open. He was lethargic and still completely puffy. He hadn't had anymore wet diapers either.

She made her concerns known, and they debated what to do. The thought of going back to the hospital was not desirable at all. She especially was looking forward to sleeping in a regular bed that night since she had pulled all the night shifts so far. And the last thing they wanted to do was to arrive worried about something that ended up being insignificant. They looked through their paperwork for a number to call, but their choices were to go to a minor emergency clinic or go to the ER at the hospital.

Her husband had been looking on his phone while she read through the discharge papers. He found a number to the pediatric floor that he had been given back in 2015 when they had forgotten the feeding pump charging cord. He dialed it and it rang straight through. He was able to talk to the floor doc that had cared for their son the night before. She told them to go straight to the ER, she would meet them there.

They both took him, but as soon as the hospital started running tests and trying to get an IV in, she left her husband in charge and went back to the rental to get a night's sleep. She was running on fumes and finally had to let go of whatever control she thought she had.

"...This includes all pain meds (even Tylenol), muscle relaxers, and seizure meds. He can't have ibuprofen bc he is already at risk to bleed bc of the edema or something about his blood vessels already leaking into surrounding cells. Therefore he is in extreme pain from the surgery. We can tell bc his heart rate in high 160s and 170s, his body is tense, he is shakes if you move his legs, and he moans if awake. They did allow him to have a little morphine, however it did not touch the pain. His daddy is with him bc I cannot watch him in pain without being able to help him."

"...whatever it is, and his liver would then have a chance to recover. We decided he had been through enough suffering, and we would risk it. I had to wake up and tell the boys what we were doing, and then go to the hospital immediately. There were tears and it was a scary decision, but not a place we hadn't been before. We had to make life and death decisions when we got that 20 week ultrasound, and again when he was born. So after having given him a chance at life in the beginning, we now had to decide about his quality of life vs interventions (or non-interventions) now. So we decided we would make him as comfortable as possible knowing the risk, and then he could decide if he wanted to fight to stay here with us. We met with the pediatric liver specialist to discuss options based on 2-3 scenarios. This included discussing the possibility of full recovery, but mostly the possibility of complete liver failure, possible liver transplant, or palliative care. The main doctor in charge (not liver specialist) was so concerned about Austin's condition that he was worried that if we sent the boys home on their scheduled flight Wednesday without them coming to see Austin, they may never see him again. He said these things fighting back tears. That. Was. Hard. The floor docs continued all day to analyze the different scenarios, run tests, do scans, wait for results, and attack the various possibilities from all angles. He got meds to make him pee, protein meds to make his blood vessels quit leaking the water causing the edema, antibiotics just in case, and even a dextrose drip to raise his very low glucose, plus the muscle relaxer and Valium. All we could do was wait to see what would happen and pray for the best for Austin. I know I personally spent some time reading y'alls encouraging comments and prayers. At the end of the day (last update by doc at 11:00 pm), we are told we are not out of the woods. His liver is still considered to be failing at this time based on the liver enzymes and needs to recover. However, their are glimpses of things possibly turning around. Words like "guardedly optimistic" were used, and some numbers were showing a slight trend towards the better. Liver transplant was taken off the list. However, chronic liver damage could still happen. And while they are encouraged by some numbers and the trend, the numbers aren't at normal levels yet. And some numbers are going the wrong direction and causing them to be perplexed and without an explanation why. We are also still waiting on virus tests to see if we can even know what caused all this. The funny thing is, none of this is a direct result of the actual hip surgery that we came for. That part all looks good. Dr. Yngve has been here to visit just about everyday except Christmas, and twice today. The only thing I'm concerned with is the fact that Austin had been in so much pain and been having the prolonged muscle spasms, that I haven't been able to do any ROM the past couple days. Small concern, I know, but one of the few things I was supposed to be in control of. Where we sit right now though, is that most of Austin's spasms and pain now seem to be taken care of which was the initial concern that sparked the plea for prayer. So that prayer was answered (for all you checklist types like me). All I can say is continue to think of us."

"...thing is that his heart rate has been in 100s-120s all day with no meds on board. We also haven't really seen the spasms anymore, but we have been told to watch for seizure activity, and they are prepared to give him something for that. He seems really comfortable and quiet, almost too quiet. We know he's been through the ringer, but we will feel like he's recovering when he starts to become a little more interactive. It's still hard for him to keep his eyes open bc of the puffiness so maybe that's all it is. I like the docs here, they seem to be really trying to figure this out. It was a little disappointing when the Christmas crew left, and a new New Year's crew came in. You always wonder if there will be continuity of care. But so far all seems to be fairly seamless. Tomorrow he is scheduled for a biopsy of his liver. They are hoping to get more clues into what caused his liver to stop working, and clues to how to prevent it from happening again after it recovers this time. There really is no end in sight right now. We don't know. We will probably send the boys home Friday, and continue camping out here in Galveston."

"...were very short, but were happening every few minutes. They decided to give him a low dose of Valium that seemed to have curbed the cluster. I've seen one short one today, but no clusters or long seizures. If you have been following along, you also know he was scheduled for a liver biopsy. While I was at the rental trying to sleep off a cough and sore throat that tried to attack me last night, Patrick told me it went smoothly and fairly quickly. And the funny thing, when he came out both eyes were open instead of swollen shut. He's also had more energy today and has been binge watching Go Diego in between short naps. He's becoming more vocal with lots of little hums and sighs. Lots of super cute yawns. However, the old teeth grinding has resurrected. Not sure what that's all about. He is also peeing and pooping all by his little ol' self. This is huge since the liver and resulting edema meant an infusion and a med to make him pee and to retain the water in his blood so it wouldn't leak out. As I understand, his body is doing it mostly on its own now. They also took the catheter and foley out, and he just has a diaper now! He's still slightly puffy maybe, but WAY better than when we brought him in. So anyway, everyone seems hopeful he is on the mend. Still don't know what caused it. Prelim biopsy results maybe tomorrow with final results in a few days. Their biggest concern now is the worry that it seemed to happen so fast, and how to prevent it from happening again now that we know the liver may be very sensitive or compromised. This is a positive post! So please share with anyone that might be spiritually or emotionally invested in him. And we just thank God as he continues to carry us through, whether the report be dire or hopeful."

"...so far. Also, the docs seem to feel lucky that this case went the way it did. They don't always end this way. Basically if we had delayed bringing him in any longer... What does this mean since he survived? It means we get to learn all about the liver. It means no more ketogenic diet for seizure control, and his seizure meds will all have to be reevaluated. It means I'm tired and not sure I'm ready to take on a new diagnosis or disease."

"...huge blow out that probably happened during his last seizure. It. Was. Nasty. Up his back, all up and in and on his brace. It was all hands on deck and we used soooo many wipes. We flossed the nooks and crannies of his brace with wet wipes, but there are still smudges and places we couldn't get to. Could you imagine if that happened in the 3 hour flight?! 😆 We had a huge entourage waiting for us when we arrived. They were all talking about how impressed they were with the docs in Texas and how thorough everything was and how everyone already felt like they had a good handle on what has been going on. He got weighed and has had an X-ray. He just got a new IV, and he was NOT happy about that. Waiting on feeds too. He hasn't had any food or fluids since we left Galveston. I forgot some things move a little slower in a big hospital. We had gotten spoiled in Galveston where supplies mostly appeared quickly, and docs were right outside the door. Is it weird I'm going to miss them?"

"...It's the never ending song..."

"...connected to the oximeter tonight. I've unpacked, received new supplies, figured out new food and med routine, and he's tucked in bed. Unfortunately the Dora The Explorer "We Did It" song has been going through my head all night. I'm attaching for your enjoyment too."

The next 3 weeks were very challenging not only because she had to care for this little guy who had just had surgery and been brought back from the brink of death, but she had to do it alone (with sporadic nursing help) because not mentioned in her Facebook posts was the fact that her husband ended up going to the ER and being hospitalized about halfway through the stay at PCH. She was in the middle of trying to recover from her own bout with the flu when she got called by hospital staff to return to PCH to take his place. She saw her husband for a total of two hours over the next 3 weeks until he got discharged himself.

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While there are three parts to this story, she wrote the first part about a week after coming home and posted the second and third parts almost 2 months later. She was quite bitter and shell shocked when she wrote the first part and considered revising or removing the first post since her words contained quite a bit of sarcasm and disdain for medical technology and interventions. She decided to leave it though. She feels the words and tone were exactly how she felt at the time, and often how she feels when her son's care becomes beyond difficult. She has a love-hate relationship with medical technology and interventions.

It should also be noted that this experience has pushed her towards pursuing palliative care when considering the need for future interventions. She feels this has always been how she thought she was handling these decisions, but she's ready to make it official and get a team on board.

Beyond Difficult {Part 2 - SLOB Hip Surgery}

Beyond Difficult {Part 1}

She approached the upcoming surgery like she usually did when something major was going on with her son. She posted an announcement/prayer request on his Facebook Support Page. In doing so she could keep those who wanted to pray for him in the loop as things came up. Many people like to know specifically what to pray for while others are looking for confirmation that their prayers are answered.

It also serves as a source of support for herself when she can read their encouraging comments immediately while things are happening, and it serves as a journal she can reference later when she has more time to process if things are moving at a fast pace.

She figured it would be a run-of-the-mill surgery. She'd post a before picture, a few stressful updates during recovery, and a happy going home picture. She had no idea how wrong she would be.

"...the doc in TX says it's only a matter of time. His opinion was to do another surgery called SLOB that should lock in his hips for a long time. We had planned it for next March which is why I hadn't mentioned it yet, however, it has been bumped up to...gulp...next week on Dec 22! We have been scrambling to make all the arrangements, and everything seems miraculously to be falling into place. That doesn't mean I don't have a ton of nauseating anxiety. The first 24 hours are said to be extremely painful. He is scheduled to be inpatient for 4 days after. Please pray for excellent pain management and for my sanity. I've found the hardest part of parenting Austin is listening to him in pain. I'll try to keep everyone updated. It's still a little surreal that this is happening so soon. I'm attaching a link that describes the surgery: http://www.pediatric-orthopedics.com/…/Innom…/SLOB/slob.html"

That night after they got settled in, they propped him on the couch wearing his brace with a pillow between his legs. He was so funny because he kept kicking his legs until the pillow would land on the floor. Then he would giggle when she had to pick it up and put it back. They played this game for awhile.

The next day she and her husband took him to the pre-op consult with Dr. Yngve. She remembers going over all of his medical issues in detail while Dr. Yngve asked questions and took notes. It took awhile and at the end of the appointment, Dr. Yngve turned to them and with a deadpan look on his face, says "You know he's complicated, right?" They laughed nervously.

They left and returned the next morning for the surgery.

"...a pretty low rate. I'm also seeing short seizure activity. And he hasn't pooped yet probably due to the morphine he needed the first couple days to stay on top of the pain and plus the anesthesia from surgery. So the seizures and vomiting could be caused from not pooping or the vomiting could be caused by seizures... Anyway, the puzzle isn't solved yet. I was kind of hoping we might get discharged today bc I was feeling more confident in my ability to care for him. We meet with Dr. Yngve in the morning, ha, probably in just 3-4 hours from now, for him to remove the numbing "balls" that have been delivering local medication to the hips. So who knows what will happen then anyway. Leave it to my kid to be the complicated case. Always. We had to laugh when in our pre-op appt, Dr. Yngve pauses and says, "You know he's complicated, right?" And we were like, "Oh yeah. We know."

"...were considered. And they made plans to try to figure it out including an abdomen X-ray and making sure his pain meds and muscle relaxers were on schedule. About an hour later we finally got poop 💩 so we could cross one thing off the list. We still didn't restart feeds at that time. So he has currently been off feeds for about 12 hours now. But he is still randomly waking with a short spike of heart rate, then a little cough, and then he tries to vomit. Not sick bc it's so spread out, but could be nauseous from pain. The local numbing "balls" were also removed this morning along with a visit from Yngve. Sounds like at least one more night of stay to see if new regimen of meds will work so we can manage at "home". We are going to try to restart feeds this afternoon with the new pain management regimen. If at first you don't succeed, try, try, again. Oh, and I should mention I put out my S.O.S after my "breakdown" to Patrick and he rushed to the hospital to rescue me. I got a clean shirt, breakfast, and eventually, a four hour nap! He's my hero."

"...all together. I feel like crying only bc of the peace I feel right now. Thank you so much for all the prayers and encouragement these last few days. It's definitely been a lifeline for me to share what's going on and feel like you guys have our backs. Have a great Christmas Eve, everyone. I hope to report even better news tomorrow. 😊 (P.S. There's a chorus of crying babies and children in the background as I write this. Please pray for all these other families caring for their sick kids tonight, and the hospital staff that are working tonight and Christmas Day.)"

There were so many little things here and there that the docs and nurses had to deal with while caring for him that not every little detail made it to the Facebook posts.

One thing she did not record in the posts was that the docs had been concerned that he had low blood sugar levels. He always has fairly low and steady levels being on the ketogenic diet, but his were lower than the usual fasting level so they had given him glucose or something through his IV to raise his blood sugar to his baseline.

Another thing that didn't get recorded was that he had swelled up and become very puffy. She probably didn't mention it because he always has a little edema when hospitalized and on IV's. The hospital staff usually give him some kind of med that eventually makes him pee so that the puffiness goes away. So the next day she didn't worry too much that he still seemed extremely puffy. He was off the IV's, and they had given him another dose of the anti-puffy medicine which resulted in a wet diaper.

Everyone, including herself, was busy anticipating discharge. She sorted and packed all their belongings. Docs came and went with updates, nurses and therapists scurried in and out making sure all the orders, meds, and supplies were ready for the anticipated flight and return home 3 days from then. She was so excited that her family might all be spending Christmas together that night that she tried not to overthink the fact that he was very sleepy and still puffy. She assumed he was sleeping because he wasn't in pain and hadn't had a lot of sleep in the past couple days. Well, at least she hadn't.

The nurse came to give his 2:00 pm meds. They decided to give him everything that was due since who knows how long it might take to get settled back into the rental. She didn't want him to suddenly wake up and be in pain after they had worked so hard to stay on top of it. The nurse gave her a chart of when each med could be given next if needed. His next med could be Tylenol at 6:00 pm.

Her husband arrived and loaded him into his Special Tomato jogging stroller. He just sat there unresponsive with his eyes sealed shut. He asked her if that was ok. She shrugged, and said something like "I guess so or they wouldn't let us discharge, right?"

Beyond Difficult {Part 3}

Beyond Difficult {Part 1 - To Intervene or Not To Intervene}

"Not compatible with life"
"A drain on our society"

These are the phrases she hears over and over in her mind whenever caring for her medically complex son becomes beyond difficult. However, looking back, although legal, she still could not have killed him before he was born, but maybe she shouldn't have forced him to live after he was born either.

She had her chance to avoid life getting beyond difficult. The doctors had said, "His diagnosis is not compatible with life" and "He'll be a drain on society." "Take him home and give him comfort care," which basically meant take him home and let him die with the aid of hospice and morphine.

Die?! She couldn't take him home and let him die! How dare they suggest she take him home and let nature take its course just because his body is not compatible with life.

But guess what? They were right. His body is NOT compatible with life. He has an overriding brain malformation which at any moment could just tell his body to shut down, but in the mean time, it causes a condition called dysphasia which means he cannot swallow without aspirating food into his lungs. When she tried to feed him by mouth it created enough pain so that he refused to swallow and probably would have ended up with chronic pneumonia if he continued to try. He was destined to die from either starvation or some kind of lung disease.

Therefore, he would not be alive today without the medical technology and intervention of a g-tube. She forced him to eat when his body could not naturally perform that function. And once she made that choice, she could not change her mind later when things got beyond difficult. It was a one time decision that she can never go back on lest she be accused of negligence at minimum or murderer at maximum.

So now that he had officially become a drain on society with all the expenses of medical technology that entails, she has to play the game of picking and choosing which medical interventions will give him the best quality of life on top of the general maintenance and costs of keeping a medically complex child healthy which includes an abundance of healthcare and mobility supplies and medications as well as hospital stays for common illnesses because they turn into life and death situations so quickly.

She had to choose to get a shunt, a high tech valve implanted in his skull with a drain tube snaked into his abdomen, when his head kept increasing exponentially in size because the fluid around his brain didn't drain on its own from his skull. At the time of his surgery, it was not yet considered a life or death situation. There are cases of children living years with enormous heads from hydrocephalus. But they can't lift their head, and the pressure inside the skull can be painful, and caregivers have difficulty moving and caring for a person with an immensely large head so they elect to have brain surgery where a shunt is implanted to drain away this excess fluid before the head size gets out of control.

She had to request a suction machine to remove excess mucous from his mouth because although he was not eating by mouth, his body still generates its own secretions along with the occasional reflux of stomach contents which he tries to swallow. Because he aspirates when he tries to swallow the secretions and refluxed food, he was still experiences pain along with dropping oxygen levels with the chance of pneumonia. By jamming a small plastic vacuum tube into the back of his throat and along the sides of his mouth while he fusses and squirms, she can help his airway stay clear,  prevent his O2's from dropping for too long, and stave off respiratory illness.

She's had to choose to do another brain surgery called a fenestration where they go into the brain and poke holes in all the non-communicating fluid filled cysts to force them to communicate. Basically the shunt was not able to drain the fluid from these cysts because they were closed off from the other fluid filled areas. They were continuing to grow and put pressure on what brain exists, continuing to cause pressure, head growth, and additional seizures.

When X-rays showed signs of developmental dysplasia of the hips, again not a life or death situation, she chose to get a relatively non-invasive surgery called SPML along with a hip orthotic/brace in hopes of preventing complete dislocation of the hips along with the anticipated accompanying pain.

When that didn't fix the joint migration, she chose the next level of hip surgery with the unfortunate acronym SLOB with the hopes that it would prevent the hip joint from dislocating so she wouldn't have to resort to the very invasive bone-cutting procedure called a VRO. The surgery typically has a four day inpatient stay, followed by a 3 month recovery using a movable brace instead of a cast to prevent loss of range of motion and to promote healing. It was going to be simple, and just another one of those medical interventions that she has had to choose from that would increase his quality of life while draining society.

Beyond Difficult {Part 2}

Those Cruel Expectations

Standing behind the minivan with the hatch up, she unlocked the wheels of her son's Zippy Tilt wheelchair and rotated it so its side was facing her. The base of the chair sat at waist level in the back of the van. She paused and took a deep breath, exhaling slowly as she remembered the last time she was at this building.

Several months ago, she and her son, Austin, had just left the "wheelchair clinic", an amazing state funded department that provides wheel chairs to kids with qualifying conditions like cerebral palsy. In their possession was a brand new, sparkling blue pediatric wheelchair; a larger replacement chair that would provide for all his growing positioning needs, but also one that felt like it weighed 500 pounds. Because of its weight, she had to carefully remove the back and arm rests before lifting each part into the back of the van, and with the anticipation of having to do that 2-4 times a day in the Phoenix summer heat looming ahead of her, she broke down and cried.

Today however, they were here for a special needs car seat evaluation so without anymore hesitation, she tilted the wheelchair towards her, threaded her arms through the chair, grasped parts of the metal structure on the opposite side, and pulled the chair towards her body so the closest arm rest pushed tight against the top of her thighs. She then performed an awkward arm curl and as the chair started to lift, she bent her knees slightly hoping to protect her back, pivoted 90 degrees, and gently lowered the chair until it rested on the ground.

She loaded her son into the wheelchair along with all of his equipment and entered the building.

After checking in, they were ushered into a room where they met the physical therapist that would perform the evaluation even though the mom had already researched, talked with another mom she trusted, and had decided beforehand which special needs car seat she wanted and planned to request.

"I want to see the Convaid Carrot 3," the mom said with confidence. She had to say it with confidence since she figured that they would initially balk at that request. The Carrot is an expensive top of the line special needs car seat, but she knew her friend had gotten one from the same clinic so she figured she could get one too.

"We don't offer that one," replied the therapist.

"Well, I know my friend got one here so I want one too," declared the mom.

"I'm sorry, maybe they've changed the rules since then, because we don't offer that car seat. It's very expensive," the therapist stated while pointing to other seats. "These are your options," and she proceeded to describe them.

The mom glared at the therapist while her inner voice threw a fit.

I knew it! Its not fair. I had a feeling I'd be told no, but then I thought maybe I'd get lucky. But now I'm going to have to expend a ton of energy and time if I still want it. Or concede to pay out of pocket even though others got it covered. But I don't even know if it's the right one for him since I can't test it. But my friend got one for her kid so I want one. But I'm tired. I don't want to fight. I don't have the energy. And it would delay an already delayed process. We needed one two months ago, and this one they are offering is already going to take up to 3 months to get. I'm not like other special needs moms. I can't fight. I don't want to fight. I'm not a momma bear. Poor Austin. I wonder how many times he gets the short end of the stick because I don't have the energy to fight for stuff. I give up too easily. Anyway, will fighting for stuff really change anything? Will it give me some kind of feeling of accomplishment since I have failed him on so many other levels? I can't believe I came in with an expectation. I know better than that. Expectations are just guarantees of disappointment.

As these last thoughts entered her mind, she realized her stupid red nose and watering eyes were about to reveal the fact that she was going to reluctantly relent so she turned away for a moment to get her oncoming tears under control. Perhaps noticing her internal struggle, the therapist said she needed to go ask someone a question about side supports.

When the therapist returned, the subdued mom submissively began to ask questions about the car seats she had been told WERE available. She chose a style that seemed to have the best features for her son, seated him in a test model, chose the lime green color, and signed the papers to confirm the order.

She left frustrated and in tears. Again. Only this time, she wasn't disappointed in the equipment. The car seat would do its job just fine. In fact, it may have features that actually provide for her child's needs better than those of the other seat. And she certainly hoped they wouldn't be putting her already physically compromised son in a car seat that wouldn't support him and do its job.

She was angry with herself for going into the appointment with an expectation. The one thing she had been trying to overcome the most these last few years since Austin was born was having expectations. Failed expectations always lead to disappointment. And she's tired of living within a bubble of disappointment.

As long as she keeps her expectations in check, there is nothing that can disappoint. There can only be surprises. Without expectations, nothing can come into her life that, while maybe perceived as unwanted, she cannot adapt to or overcome including: Austin's unique needs, an overly heavy wheel chair, and now, a lime green car seat.