Friday, January 30, 2015

Miracle: Then & Now





This Picture was found among 2k pictures from a Wedding at Bob Hoff's Hangar several years ago!
*sorry for the dirty monitor.The back drop is a real sunset /dusk. It was a gorgeous night and within a few days of me receiving the bad news; that my body was failing all meds available for Crohns.
The only thing to do to keep the inflammation down was to go back up on the prednisone- and wait.
The wait was too long and irreversible damage took place.
*
The above photo was taken by the SAME photographer that took pics of J. and I before this last  Christmas!
A photo session that almost didn't happen because of illness. They stand as book ends from the start of a very difficult time - Yes, a new med has come out and I have been working my way down from 60. Countless times I have gone back up to a degree to allow my body to handle what my body no longer could produce.
 
Today I drop to 15. Back to where I was four months ago. It is a long process......
 
 
 
 
Maybe this photo is just a bookmark in the story.
Keep reading!

Saturday, January 24, 2015

Every Mother's Wish

 



Before being a mother, I thought that my greatest wish for my child would be for them to become someone who serves.

Not just at a fast food joint, but really helps others.

Now I really find myself wishing he was the type to brush his teeth morning and night and go above and beyond by flossing.

Wouldn't that be awesome????????????

If he flossed morning and night that would be even more awesom-er!!!!


I mean, I don't even do that and every time I ask J:

"Hey, did ya brush your teeth like I asked?"

I also make him do a breath test.  I am down to the nitty-gritty, Reader. I want clean teeth-

Forget helping people carry their groceries inside, put them away, and start dinner before he heads off to Scouts!

Who cares if he learns to dust first and vacuum after! That mouth better sparkle when he opens it to ask if he can go hang out with his friends.



Oh, and I want him to read and do extra credit nightly while I am wishing on my stars.

kidding, Readers. HOWEVER!

If any of you out there have wee ones that brush their teeth without a reminder, I am so jealous.

I really actually do want him to have more than proper hygiene etiquette.
Serving actually was and is what I hope J learns in the long run.

 Who doesn't like to be served? It feels great. It's a relief.

(My Lone Star in Royal Blue that I lassoed into a rope wreath some time over Christmas... )


It's like when you come home- from where it is that you go when you are a kid and your mom walks over from the stove, carrying a plate full of food, like corn on the cob and mashed potatoes next to soft, tender roast beef. (This is an actual account of what happened to me the other day- minus the corn on the cob cause it is out of season and I can't digest it, and I was actually in bed when she handed me the plate.)

Being served unexpectedly or in a surprise manner always is humbling. These days good customer service is surprising. A lot of businesses are needing to cut back due to the economy and it stretches the employee.

That isn't the case everywhere but it is possible, if I put my computer down for a minute, to watch a person and tell if they are really stressed out.  If they are falling asleep during a conversation- that can be a dead give away.

(I wish the sweater next to this star was my size! Just for toddlers. Dang it. )



The other day J. was looking at what it was he wanted to do and he gathered how much it would cost using the skills of adding and subtracting he has learned at school.

This very useful skill helped him realize that he is going to have to get creative or earn more.

"I don't need a job, Mom. I need a career!" 


(he got to implement this..... and Go Pro helped me see the vistas in such clarity.... pink and blue hues. It was amazing. Thank you, Go-Pro.


he bemoaned one night after researching the internet and watching Red Bull's something something about dirt bike riders competing in foreign lands and then bikers riding down the Arches in Utah.

After assessing the prices on some gear I gave him a good pat on the back and said:


"You are correct, my boy!"

 
 
Thank you, teachers!

For teaching Jaden the basics and that if he is going to get to do what he wants in this world, he is going to have to do more then add and subtract!

This will be tough! Especially at 11!

In this day and age you have to stand out from the rest of the herd if you are going to get noticed. Riding down the arches,  then riding in an ambulance to a place where they can help quadriplegics is one way.






Another is to serve someone.

Really find out what they need and get it to them. Delivering can be hard. Especially if you are sick. You may know exactly what they need- you just can't get to them! That's what I hate.

Which initially is probably going to mean you don't make anything. Taking time for people is the LAST thing we have time for  it seems. Doesn't it?

Back to the basic job for an 11 year old. Or something an invalid can do. It's pretty tough to acquire the ability to sense needs and then deliver.
Especially as a kid.
Or an invalid.
One state, of being young, is that you are in a process of growing and you think everyone is watching you on stage.

The other, being disabled, you are already grown and possibly still growing outward, and you have put yourself on the stage by yourself, or by default your disease has helped you there, and so others can't help but watch the show. I guess the second thing you need to learn after flossing and serving, is how to entertain.




 Being able to discern and communicate is tougher now more than ever despite having devices that make everything as close as the next flu bug flying around!

For example. Padre could flip flop downstairs, put his laundry in the laundry room ( remember, reader, he puts them in the bins labeled specifically for him? I guess so we don't mix ours with his, then commence his ritual of entering the bathroom and finding what we had left when we'd taken our showers.

Using the intercom off the phone in there he would dial up where he thought we were or just do a blanket intercom:

"Ya know. I like a clean bath mat. I have bought my own bath mats and I come in here and find water on the floor, a bathmat wadded up and slung over the bar to dry...."

(He and J. didn't know that I had created a new system for the bath mats. Padre's in one labeled with his name and ours in another. Quite straight forward. But it can be hard when you are singing in the the shower. )

Boy! I miss those days! I had taught J. the post shower walk through before Papa got home and then he just learned to shower afterward.

Having surgery has really put Padre down and out.

He has had to not use his arm- at all. However, he has tried a couple times to do some things, like make ice, after putting a bunch into his mug and chop it up. What can we say? He loves ice!!!!!


(Kurt's, Barely Frozen)


Madre gave him a talking to! And he obeyed! back to finding that job......

Now days we can quickly communicate, that we can't understand, how to help a person in real time.
Heck, an event will be going on in our lives and I am thinking of words and sentences and
I find myself blogging about the event in my head before the scenario is even over. Or scribbling on a piece of paper some brilliant story only to find useless jargon the next day.

(I did that with my journal before I blogged, so maybe it is just an extension of writing on a regular basis and not just my attempt to contstruct a clever sentence.)

 

* sorry, I love this star and the cowboy, rustic look of the wood in J's window. This star stands out among all the rest! WOW! There are so many that are cool and cute but this one will grab your attention. The royal blue is amazing.

back to how you get a job in this day and age and the secret to how ya do that.....


I've gotten a lot of help being in my situation; ever changing struggles that pop up- much like chicken pox in various places all over your once perfect skin, are met with trying to figure out how to figure things out!!

I don't know how people do it! Without individuals discerning certain situation, I would be up a creek.

When I tried to go to college in the winter of 2008, it was so futile. I was pulling my book bag one day across the lone campus, the wheels bumping over the ice and snow already piling up from when some kid had bulldozed what had fallen in the last 15 seconds.

I was in a snow drift before I could get to class. My English professor was behind me and she was the one to talk straight with me. She saw my plight. Heck, I couldn't even get to class fast enough.
However, she herself had lost the use of one hand and learned to type with just one faster than most with two.

She helped me get to the next building and then she helped me see that maybe college shouldn't be in the cards right now. (note- Rexburg is the North Pole college equivalent. So maybe most people, even healthy, should re-think it a bit and just do an online course or something. )

This Christmas there were a couple things that were not right with some orders and the other day I got some compensation. The best part was it was a hand written note from the guy who had been working with me.

He didn't just say sorry, but it appeared he looked into my blog, and I appreciated the words:

"STAY  OPTIMISTIC" .


Which was one of their patch handles.

That's service. And that helped me. I mean it REALLY helped me in that moment.

It felt real and not the same droning hum of people that are doing something repeatedly and have turned into a human Siri.

A Pharm Co. follows the carnage of their product by calling me quarterly. The same guy calls me. We could seriously be best friends after the last few years of calls. Maybe he has a time quota when he calls. And I am not picking on him by saying what I have to say.

He is very nice, efficient, collects the data and we get off our call and I become a statistic. Which is exactly what I don't want to be. When he called today it was difficult to talk. He asked if it would be better if he called later. Wanting to just get the medical survery over, I told him to go ahead.

The questions aren't ones that have the personal touch like: "How are you?"  And really mean he's sorry to hear that I had to super glue one of the the many cuts on my thumb that is so sore and just continually lays open like a peeled back banana.

Nope. They are just questions that state the symptom, where, when, how much. Nothing of the "On behalf of such and such company we apologize. We are truly trying to help you by getting the best of the best to research, develop, find, do whatever, to HELP you.


To help me. 

A mother.

That's my wish.

That somewhere, some person is studying so hard (after flossing his/her teeth) to learn about why my body does what it does and to make it stop. So that I can continue to tell Jaden:

"If you don't brush your teeth the dentist will find cavities drill holes in your teeth until they fall out and then you have to wear dentures. "

-I just had a horrible thought..... what if he brushes them and then just gets them all knocked out while doing the things he loves?

Wednesday, January 21, 2015

Padre has Pulled up Stakes

Well, I thought I'd put the news here before it was hashed over social media;

 
Madre briefed J & I a couple weeks ago that Padre had been practicing and was now going to be showering upstairs. Yup after many years, he is leaving us in the basement to shower upstairs.

Simultaneeously, my fork dropped to the plate and Jaden shouted:
 
"WHA? "

Our reaction to this sudden, news reaked havoc on J & I's Post Tested &  Stressed  Shower Demeaner by Padre nightly, and sent Padre screeching  backwards in his assigned wood, Captain's Chair seat.

After being in the war, the sound of sound has left him with some weird quirks that have been the subject of many a night's pillow talk.

Readers, this change is HUGE. Monumental. It's a game changer.

For all of J's short and my long, long life Padre has showered downstairs.

To be honest, I had seen some signs of retreat. But had tucked them away as mere mental lapses.

But now that it was literally out there on the table; it was starting to come together. Little clues had been taking place that were making me wonder what was going on.

(padre mid project)


For instance,  I'd noticed his dirty socks, once put carefully in a bin labeled: "Dad's Dirty Socks." Which is really just for say because his socks are the cleanest dirty socks to enter the laundry room.

But, anyway, his grey Carhardtt socks,  would be in the place that we put things when we were going to go down the stairs later: between the banister and the wall at the top of the landing, and didn't want to go just then; make one trip later with all the stuff. There were his personal items as well.

I thought he was starting to possibly get amnesia and placed them there then failed to move them on down to the laundry room.

OR

 it was a sublte reminder that, once cleaned, he wasn't getting them back up and in his drawer so it was a silent strategy he had gleaned from the Vietnam and other wars he'd heard about.

One day I was showering and I noticed his floss missing.



ME: "hm. He must not want me using his floss."

I'd made a bad habit of flossing in the shower like he did and then leaving it on the ledge- twice. Along with my long hair, it could possibly plug up the shower. And so this was something that had been discussed over dinner some months or years previously.

It wasn't until I saw one dish of soap that I wondered where the other two had gone off to.

Now it was all becoming clear.

The sound of his flip flopping footsteps would no longer

ME: "Do you think this is really the best time to talk about the change?" I said looking at J.

Mom: "Well, with his surgery coming up we just couldn't have him walking up and down the stairs."

J: "Well, just Great!" he said throwing his chair back and shaking his head.



ME: "Hold on, here. I thought you would be glad to not do the Padre Pre-View of the bathroom before he flopped down the steps."

Readers, this mental check list is just a small one- his towels were left to him, his bath mat, also left for him.

No pools of water from a shower curtain not sealed like a letter to the President from the CIA.  (To save the orange linoleum floor from peeling up off the floor.

Other critical criteria:

Our towels hung up and the toilet flushed.

Pretty simple. Sorta. Because when the toilet is flushed it gets really cold so you end up waiting for after the shower and if you have a short term memory, well, Padre would come and find the bathroom toilet unflushed.

Padre also did an inspection of the basement. And we'd feign we were asleep. Which didn't change anything except that we could tell mom we were asleep, been shook from sleep and told to hang up a towel.

Actually, I lied. I have been in a deep sleep after a bad case of something and had Dad intercom me about J. using his bath mat or something like leaving a surprise for him.

Now, in the blink of an eye, it was over. Our night time rituals were changing and I was/am worried about the ramifications. Like keeping the shower whiter than Cloroxed socks.

ME: "So why are you upset J.?"

J: "Well, I was starting getting used to showering after him."

ME: "So ya wouldn't get in trouble for leaving a mess?" I looked at him with the mom look.

J: "No, cause whenever I showered after him, I knew I was getting into a brand new, clean shower."

That is a good feeling.

Yes, Readers, it's a sad day. Despite the successful surgery Padre had, he has weeks of healing and then physical therapy.

Due to this I have been trying to get down some important information that would help us in the even something happened.

Me: "So did you get down and scrub the floor first or start with the side walls?"

&:

"What about that really light drizzle you would shower under?" I asked figuring I would finally learn  how he avoided the being frozen, in milli-second time scalded due to the flusing of the toilet right before jumping in the shower. Or some inconsiderate upstairs was un- knowingly causing you a heart attack;  had scalded the hide of your back side and you were clung to the top of the ceiling.- Not the coolest obituary in the book, but interesting.

Padre: "That? Oh, that was just the water dripping down off the mirror I would use for shaving."

Finally the riddle had been figured out. To think, that if Padre had gone in his surgery, I would have forever thought that he had somehow washed his hair and body meticulously clean under a single, small stream of water.

The morale here, I believe, is to ask your parents questions about their lives. Get their stories. Record them. Don't just ask about the resusitation question- get creative. You never know what you could learn.

Oh, and P.S. - Padre would take a patch of shower per night to clean. Then work his way around the shower each night.

Brillaint.
 
Oh, and J. asked if he wore his flip flops in the shower.
 
"Nah, I had my spot cleaned off by then. However, when I was in Vietnam......"

Tuesday, January 20, 2015

Happy Heart - 1/20/2015

 
this small star makes me happy.
 
Kurt's Valentine "Sweetie" is hanging in the kitchen and whenever I sit down for a meal and look over at it, it makes me smile!
 
Is it the color? Bright, cheery, just Sweet!
 
There are just some things, moments, times I have had that make me happy.
Often they happen unexpectedly.
 
Today there were a few things that made me grateful. Well, alot of things.
The biggest was driving all over the farming areas west of our home looking for a friend's home.
 
Jaden was giving me the directions. When he'd gone there by himself, he was busy talking and having fun; so when we tried to "re-find" their place; we ended up in the car for some time.
 
I had only so much energy left so when we got the approximate address; it was none too soon.
 
Being 'lost' with J. was actually nice.
(finding them probably made that factor
 
Don't you also love when you can drink hot cocoa, eat some food whipped up real quick, talk and enjoy your family or friend?
 
 and you don't want it to end?
But it gets late?
And you have to go home and go to bed?
 
That was one thing.
 
(Two is better than one : )   )
 
So I recieved a package today from Best Made Co. They fixed an order that was made around Christmas. Inside was a card from Nick, who helped me pick out the hand made Christmas gift for J. and also talk about other items.
 
I have put pics up in other posts of their clever badges that say things like: Courage, Fortitude,
Wonderful.
 
Famous.
 
They have some cool logo ones. But the one that we really have needed is the one that says:
 
Be Optimistic.
 
Nick wrote on my note to "Stay Optimistic."
That's when the waterworks came. It's hard to become or obtain a quality. Even harder to maintain it, don't you think?
 
Thank goodness for others. I don't think I could have made it through all of these things without others. I have good friends. I am amazed at the blessings that have come in our lives.
So many times I wondered or knew that the reason something took place would make sense later.
 
Almost two decades ago I recall a few things happening- my health taking a turn for the worse,
and my heart breaking over something that I wanted but knew wasn't the way it should go.
 
Inside I knew it would make sense but it didn't make it easier at the time.
 
Now, I can say to myself: "That makes sense it worked out or didn't work out."
J. is the reason.
He is the answer to all my questions. I didn't know it at the time. I would have hated to have missed all the calm, peaceful, happy moments I have had as a result of the tumultously painful ones that preceded him.
 
*
 
I hope you Readers have people to talk to. The other night J. went on a camp out and I was stoked to have some time to talk and chat or hang out with friends and EVERYONE I knew or tried to call was on a DATE!
 
yeh, I know!
So I tried to write in my journal and read. And rested. Worked out fine. But still!
 

Monday, January 19, 2015

The Wreaths- What we Love



Readers,

I had to re-post this pic from some time ago. I've been reading my past posts lately ; I've been hurting at night and it helps to go back and remember. I had this picture under the title: "Wreaths."
Because it was the holidays but these were the only wreaths adorning my door! Pretty adorable when I look back.

Anyway, I had just been talking to a friend about J's love of basketball and all the different sports.
Well, this was something I had forgotten J.'s hoop obsession. I mean we are talking not one, but two basketball hoops.

Two hoops. Not one. Two, Readers.

Oh, my. I can say I am grateful to not have the constant thud on my door.
In a way I miss it ..... uh, oh. I feel some sentimental-ness over J. growing up! Better stay on track here.

Back to the "Wreaths". You, Reader, know I  got into a major wreath making ordeal in the early fall and into the winter. No, I was not making basketball hoops but the actual wreath for decoration.   I still am in the wreath obsession for some reason but I have just been too ill to do it. And that is only because I have to finish a couple that had come to mind.

One wreath- will have to go on the back burner for next year because it is so intricate. But I have to say this- I LOV-ed doing them. In the midst of my misery, I found something to calm my mind.
I loved looking at different ideas of others and then adding my signature style to it.

Granted some screamed:

"This chick is on prednisone."

But others turned out to be pretty darn cute if I say so myself. And I inspired others to elaborate on what I started and it was fun.

I learned about the feel of different yarn, what was cheap and what was cheap but looked great.

During my difficulties and afflictions I found that there were things that I could do to help me endure. And to bring joy. Maybe it isn't a big deal to most. And like I said in another post: 'They will probably end up on an aisle in the DI- they gave me something to do; a goal. Just like J's hoops on my door- he loved the heck outta playing basketball.

He loves a lot of things and when he goes and does them he has a fat smile on his face.

Saturday, January 17, 2015

Outdoor Adventure Picture Contest!



Mountain Mom and tots just posted a link to a site that focuses on family and the outdoors. I know it seems to be the antithesis to my life lately. But I have a son that breathes it and I am in the process of trying to resucitate it. Anyway- They have a picture contest.

You and your fam outside. Doing something. It could be croquet. Whatever. Just send in a photo. And don't vote for yourself like I did until I read the information telling me not to.

Sorry!

I submitted a pic of Jaden indoors. In his sleeping bag. I like to do things in revers, I guess.

At this moment he is actually OUTDOORS in that sleeping bag that he saved up for and took for a test drive the other night by closing the vents downstairs and was just "testing it." I had to double up on blankets to keep from freezing.

(Harriman Park- Great Place to Cross Country Ski that is close by I.F. The city also has two places in the city limits that skiers can take to if interested. Tauphaus Park and Freeman Park both have trails!
Pretend J. and a zillion zit riddled faces putting up their tents and trying to heed the advice of their leaders to keep from "getting wet in the snow" and to try and "stay dry."  For the record J. said his bag did great in the negative 3 degree weather last night. )

You can win some surprises for entering the contest but ya need the votes. Hence, my plea here on the blog.  Check out some of the other pictures- they are pretty fun. And feel free to run against us with your family outings. I know a lot of you have some impressive photos of family funness in the Great Outdoors.

So here is the site: outdoorfamiliesonline.com

(I held that watermelon all the way from I.F. to Island Park on my lap. I wonder if I should have submitted this pic.... hmmm. Or put that melon in a car seat. Oh, yeh, there was no room.)

Our pic is of him in an orange sleeping bag so it should be easy to find.  Yes, it is supposed to be of family and being outside. However, Readers, you know what that would entail for me. And why I can't get out there but how we are trying to help me enjoy what he does with GoPro.

A lot of planning goes into adventures. Even with a sick mom, someone has to orchestrate the food, budget, destination, etc. etc. ! It takes the whole family to make it happen!

But like the pic shows- he is giving it a test run. I just hope he is not soaking wet right this moment as it has been snowing..... Which means he had to put his tent up in the snow, is standing around a fire in the snow, or eating spam because the snow made a fire impossible.
 



 I gave my best advice and went over his list before he left. After being gone five minutes he was back to grab his gloves. Yup, those are important. Cross your fingers he survives his first hike/winter camp out with the scouts.

When he gets home he will have to quickly transition from scout to skier as he is heading up to Kelly Canyon for some night skiing. They have had some unusually good snow this year. It's close, affordable and if you network, you can chip in on rides to the mountain.

I gotta take a break. More later.

Saturday, January 10, 2015

I will not Live to 103 or Maybe

I feel 103.

My grandma lived one day short of 103.

 I,  on the other hand will not. If I do, I will eat your hat.

Not that I won't try, Readers. I just don't see how it is possible.. I gotta BELIEVE it can be!



Bad night. Hence, the negative attitude right now. Not cool with watching TV in bed all day.
Want to be out doing some things, running some errands. Visiting family. Hugging nephews and nieces.


(who can pass up a belt buckle won from a rodeo? not these pint sized cowboy nehpews. darn cute.)

Will the prednisone kick in and let me do that without much pain today?

Can you order Ninja Turtle shells that are real to hold up your rib cage online or has anyone invented that yet? Where was I?

Typing hurts with bone pain. Thanks disease. Or prednisone. Or fate. Whichever.

Well, morning was bad.  Last night I ate like someone on a high dose of prednisone who had to taper and then was trying to fill the void. This morning I woke up and can't bare to even want to look at food but had to swallow some prednisone. I took it with a sip of water - too sluggish to move and able to guzzle a whole 9 glasses of water with it.

(this is what Cushings makes me look like, I have decided.)


So I think I propped up here for about twenty minutes while it sat suspended in my esophagus and burned.

I hate that stuff. The bitter taste. But anyway, it gave me time to recall the dreams I had and I am dang glad they were cause while I was dreaming, I thought it was real.

So there were awkward moments of wearing different sandals to walk the river in front of friends and guys and my excuse for having different sandals on was this:
" My Teva strap broke." They seemed to agree that would be a problem and, hence, the sandals of different origin were kosher. Then it went from summer weather to snow and the sandals were not helping. And we had to traverse the Snake River and for some reason not by way of the road. Which caused me to feel some fear. Snow. The River. Scaling the bridge and inching along side it holding onto the ledge and looking down at slushy snow. 



Which always requires an underwater swim for just two seconds. Luckily it transitioned to a weird fair.
-that involved math problems and me too proud to ask Chel for some help that were washed away by virtue that they were just a dream. What fair has school work to do for games instead of throwing darts or using a hammer to hit a bell?


Dream Fairs.



What was NOT a dream was the rib cage that I am to the point of asking the doctors to go ahead and just carve that side of my ribs out. And while they are in there- just go ahead and take the digestive tract, sew me up, and call it good.

Did I just say that? What would that feel and look like anyway? A groundhog without part of her rib and digestive parts..... hmmmm.
 
Then I thought of a friend who has a farm and has to feed pigs. And once she said that they might eat her and that made me chuckle. And I didn't feel so sorry for myself. Or J. and the pain and torture he will go through having a ground hog for a mom.
 
wah.

Yes, I did. I don't feel like writing and so I am forcing myself to. They hurt. My grandma's hands must have hurt for a good 50 years. Will that be how long we go or will there be a miracle that comes down the pipe for bones and joints?

Isn't life just one big math problem?
 
 

A constant stream of math problems, delved out by an unmerciful math teacher who did a couple sample problems on the board, then cut you loose on some problems that looked nothing like what he or she did on the board.

With the chalk still settling in the air I would stare at it and wonder what on earth. Then skip to one I had a faint idea how to do and finally the bell would ring, I would neatly fold up the paper in the page I was stuck on and maybe take it home and ask someone what on earth it was talking about.

Such is life.

Either ya fold up your paper and hand in a blank spot for the the problem you had a problem with; or you figure it out.

 Solve it.


(Bacon in Panic - a gift I needed to give padre but didn't. darn.)

hmm.... I dunno how to figure this one out yet. Gonna need A LOT of help. So I am not going to be proud like at the fair in my dream and ASK for some help. Get this latest gargantuan math prob figured out.

Constantly having to re-solve or solve some scenario in life. Until finally one day you get to the problems that you, and no one thus far, can solve yet. And that's when the heat amps up.


(and you hope that you just write letters and not go postal.......)


"No one knows the answer to this equation? There isn't an answer key in the teacher's desk? Why not? This is the critical problem!"

J. just informed me "the change" in Saturday plans and I nodded my head. Ahh. Saturdays as a child. Granted he had a bloody nose like one of my sisters used to get all the time this morning, but other than the dry air and him sneezing onto my Christmas White Polyester bed spread when we were talking this afternoon- his Saturdays are just beginning.

Time to get with mine.

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