As normal as it can get

I had a pretty normal day. Well, as normal as it could get.

M resurrected a project from the basement. Zoe Book is a designer journal business that Scott set up for me years ago. I abandoned it when life with three children, ages 3, 1 1/2, and 0, got too sticky. She's excited and hopes to start selling them in the school trinket shop.

N has a sore throat. It is getting worse, but she doesn't have strep; I had her tested this morning at at the local urgent care. She thinks she's dying, but I'm finding it hard to be sympathetic; tonight, she played outside without a coat until I threatened to beat her.

It feels counterproductive to take your child to a walk-in clinic. There's just not enough hand sanitizer in the world to counteract the germs lurking there, not to mention the ones being hacked out into the enclosed atmosphere. If you weren't really sick before you went in, you certainly will be when you leave.

JA ran outside all afternoon in spite of the classic January-but-it's-really-almost-April weather. He played hard enough, but every time he ignores what I say, he gets a lap around the house. I'm thinking he will be a great track star...... probably a long distance runner.

C is thrilled with the new cat that just "showed up" at our door. I'm a little suspicious because we were offered one. I refused, and here a kitty-kitty conveniently appears out of nowhere. Hmmmm....... The kids are thinking about naming it Craisin. That's fine, but I'm not feeding it.

Scott...... Scott is pretty darn sick; everyday he is a little bit worse. It is agonizingly painful to watch him go down, and then down again. Salt Lake keeps saying the same old thing: Stinks to wait for a transplant.

A sad day at the Franson house

If you grew up on a farm, you learned to never get attached to the animals. Chances were very good that you would be eating them the next week, or they'd get run over on the highway. I am no longer on the farm, so I guess it is ok for me to bawl over a dead cat.

Roughly the size of a raccoon, and 9 years old, Raisin was a long haired, dark calico manx. Every spring, she would shed great globs of hair; it looked like dead kittens all over the yard. But, she was a great mouser and extremely tolerant of being mauled by infants and rough children. The vet thinks she ingested poison, perhaps, via a dying mouse.

The kids all took it hard, except for C. Without even a tear, she told everyone that it was ok, because Raisin would be resurrected; that we would all be together again. What a sweetie. She took it upon herself to give loves and hugs to make us all feel better.

Another long day for Scott. He is trying so hard to stay awake during the day, but his schedule is all messed up. He's also complaining of that foggy feeling, again. We will restart the lactulose in the morning, but at a lower dose since it upset his stomach the first time.

capable

Scott's parents visited with Scott while I took the kids to the cousin's, and then the Cromwells dropped by so say hi. Here, Scott had been abjectly miserable all day, but was lightened considerably by a few visits.

I am amazed at what a visit and a card can do. Usually, I'm leary of bothering someone when they're stressed out, but if it's done right, it is a powerful show of love and support. I really have to do that more often.

I have to do a lot of things more often. We have been touched by the outpourings of love and support: phone calls, fastings, prayers, prayer rolls, visits, cards, emails, diversions, food, friendship.......... thank you, thank you. We feel so loved and blessed. It would be sad if I forgot all that and went back to my old self.......... not that my old self was THAT bad, but there's definitely room for improvement.

I have it from a reliable source that the Relief Society is staging a cleaning coupe on my house, next week. I'm thinking if I have energy enough to sheetrock, then perhaps, I should be able to clean my house. Not that I would actually choose to use a lot of energy cleaning, but the fact that I'm perfectly capable makes me a bit uncomfortable with having someone else do it.

So, I cleaned the toilets. It was a gruesome job as they have been neglected for some time. I guess, that's one good thing about hearing rumors that the Relief Society is coming to clean your house...... it sure does motivate you to clean your house.

Mwa ha ha......

Scott's bow ties are now available online through Beau Ties LTD. They are named Pomona, Costa Mesa, and Inglewood. I'm so happy with how they turned out.

Scott had several good hours this afternoon. It was a merciful gift as the last few days and nights have been excruciating.

We are having homework wars. The cousin sleepover at the Stakers, tomorrow night, is at stake. It's not a problem, because kids that choose to stay home will have plenty of work to do.

Mwa ha ha.......... Parenting is so much fun.

Wanted: a magical medication

Scott complained about not being able to sleep, which is nothing new, but there was something different; subtle, but significant. The fog has left his voice. He can speak clearly. It feels like Scott, albeit miserable, is in there. He's not just some rag doll propped up for decoration on my bed.

So, the lactulose must be doing something, but I'm a little disappointed that it didn't do more. I'd really love some magical medication that shampoos my carpets, cleans the toilets, AND flushes out offensive ammonia. It seems sad that the medical profession has come so far, but still can't accomplish the simplest things.

Seriously though, I wish that it would've relieved some of the oppressive lethargy. That seems to be a bile issue, not an ammonia issue. I guess I should be happy with whatever relief he can get.

A heavy, silent snow falls this morning. It is my favorite kind with huge flakes. I enjoy watching it blanket my yard, just as I had wished.

a pinewood derby

This year, they have announced that there will be no competition at the pinewood derby. It is just for fun. Apparently, the mothers are tired of taking crying boys/fathers home and are hoping for a conflict free atmosphere. I don't know what they are thinking, really. In the end, everyone will still know whose car is the fastest; and I guarantee, someone will go home in tears. The goal this year at the Franson's is to not have the slowest car. Not a lot of effort has gone into it, but Scott did sand the axils.

Scott slept most of the day. The lactulose has not been as harsh as purported on the internet........ at least, not yet. We will see what this night brings.

Every now and then, I get a gagging panic at how much ground Scott is losing. It literally knocks me to my knees, and leaves me begging for mercy. But it's at my ground zero point that I find the most peace; the Spirit speaks to me there. I am consistently admonished to be still, and be comforted. The Lord must have a no flailing policy...... too bad, I'm a pretty good flailer.

When the ER calls you......

You should always consider things pretty bad when the emergency room dr unexpectedly calls you. Just know that he is not calling to see how your day has gone, or if the easter bunny visited your house this morning.

So, it wasn't the worst news, but it wasn't good news either. Scott's ammonia level is elevated; he has mild encephalopathy. This would explain the rapid mental decline very well. The fix involves using cathartics (a special thanks to Jenni for introducing me to this word, just last week) to eliminate the offending ammonia in an unpleasant manner.

I haven't told Scott about the lactulose yet, because I can't hardly handle it myself. I am praying so hard that they will call us for transplant before our hepatologist officially informs him of needing the lactulose in the morning.

....... let him break the bad news. I'm going to bed.

Easter

I don't remember Easter ever being so movingly significant for me. It would seem that Easter Sunday becomes more meaningful when you are anxiously awaiting your own redemption and resurrection.

Nice try

Concerned about his rapid mental decline, I called the nurse coordinator for advice. She recommended that I take him to the ER to rule out encephalopathy, a fancy word for really, really bad news. He does have a high bilirubin count, which causes extreme lethargy and malaise. Those words mean: you are still alive, but wish you were not. It is exactly as I had suspected; there is nothing left to be done, save a transplant, to help Scott...... but I had to try.

I really am trying to cope. I usually think of how things could be worse, in order to feel better about how things are right now. Unfortunately, the situation is such that any worse is too bad to imagine. I've had to switch over to thinking how nice it will be when Scott is better.

JA called while we were in the emergency room, "Mom? Don't forget the pencil sharpener, OK?" I had to explain to him why a pencil sharpener wasn't very high on my list of priorities at that moment. Alas, I am a softie, and purchased it on the most insane day at Walmart, while Scott's fluids were dripping in. If that's all it takes to thrill the boy out of his socks, then I guess I'm happy to oblige. Besides, it was nice to be able to "fix" something.

John and Kathy came to hold the fort. Our neighbors brought dinner. The kids helped clean the house and took baths. I am sending loves and a huge thanks to all.

snow melt

After waiting months for the snow to melt, I am wishing it back again. Anything to cover up the mess and the neglect over the last year. Just the thoughts of grass and garden plow me under.

It was a long day for Scott. He's in a fog of confusion and bizarre dreams. Perhaps, I should've called Salt Lake, but I know they will not be able to do anything. I wish he weren't in so much pain, but he doesn't want the drain messed with again. The discomfort seems intolerable to me; he refuses to go down for anything except for transplant.

I had a pleasant enough day. We had breakfast with Ann and Bert at Scott's parent's house; wonderful to see them. I purchased material and made the girls matching Easter skirts; so adorable. I even made after-school snacks for the kids. In passing, I had eaten my second slice of apple before I realized that someone had sucked all the carmel off.

energies

Scott's pretty wasted; reads to JA every night; seems like a little thing; precious energies well spent.

Packed mascara and toothbrush; kids' bags on kitchen floor; gas in van; chewing hard on dead gum; twitching for phone call; feel sorry for next real person telemarketer that happens on my number.

Sigh........

There are some really great benefits to living in the mormon culture. Everyone is considered to be family, so there's a support system whenever you need it. I have to thank everyone for all their fasting and prayers, not to mention all the yummy rolls, casseroles, dinners and desserts. We feel very loved.

Two ladies from the ward showed up on my doorstep, today, and said, "We're here! What can we do for you?" I do kind of wish I had had the guts to give them cleaner and set them loose on the bathrooms, but since I didn't, we talked a bit and had a good laugh. It really lightened my day, thank you. I love it here.

Scott didn't sleep well last night, so he slept all day, so he won't be sleeping tonight, so he'll sleep all day................

The man lives on pain pills and carnation instant breakfast drinks. He's never been a fleshy man, but now he'll never be able to sit for any length of time due to the additional loss of padding. I don't get it; no matter how much I eat, he just keeps losing weight; so frustrating.

So, with the fireplace walled over and sheetrocked, I sadly returned the jackhammer drill to the neighbor's. I will always have a soft spot in my heart for that drill. My father has an antique gun on his mantel. Personally, I'm more likely to put up a HILTI. It's a beautiful piece of greasy equipment, and there's no better therapy on earth. Sigh..........

Bow ties at CAL Ranch

I sang primary songs while the kids got ready for school, this morning. It's part of an overall effort to keep my mouth busy with more pleasant words. Perhaps, if I can't be a nice and happy mom, I could be a more neutral, "peace, be still" mom. Nothing good is accomplished when all I can spread is misery.

He couldn't help it; he had to wear one of his new designs. So, even though we were just getting labs drawn at the hospital and socks at CAL Ranch, Scott dressed up and wore the green bow tie. I think he will stay dressed up all day. He looks almost...... almost like nothing has ever happened; this past year was just a dream.

Scott bought me some Dr Pepper jelly beans, and teased that he would put them in a little bottle for me to take as medicine. Perhaps, he suspects that I've laid off the caffeine these past few days. Perhaps, that is why I am so depressed and have a pounding headache. Perhaps, I am just tired and need some resolution to this situation.

Bow ties

Scott's bow ties came in the mail. It brightened his day, and they're beautiful. They will be available through Beau Ties LTD on the 28th.

Another Monday.

My mother came to hold the fort and rotate the laundry while I napped. I was hoping that it would help, but it seems that my brains have leaked out of my head for the very last time....... never to return................ ever.

Home again, home again....

Scott wanted to be in his own bed, so we came home a day early. I'm equally exhausted either place; it doesn't matter to me. Though they protested, I doubt another day would've been enjoyable for the children; they're all so tired.

I don't want to go to anymore social activities where peripheral people ask how we are doing. When I say, "We are making it"; they say, "No, how are you doing, REALLY?" They're just trying to be sympathetic, I'm sure, but is it not obvious? I don't have energy to waste on nosey people who press annoyingly hard to hear me say, in essence, "Yes, things stink, right now."

Anyway, it was a nice party. The kids had a great time with more of their cousins, and the food was perfect.

Scott seems better than he's been for days. He's being more diligent about taking the pain meds on a schedule. I can't believe what a difference it makes. Also, I think discussing legos with nine year old Justin really perked him up.

Sunday, again

I've been resisting the urge; it would be so easy; just a little black pen line would change that "o" to an "a", and give the vinyl lettering above the toilet a more truthful meaning:

You are smarter than you think,
You are stranger than you seem............

I'm grateful to have good family and friends to help buffer the stress on the kids. It's more than comfortable here at the Garcia's, as it was at Dawn's and Kari's house. Thank you.

M said, "This is such a good vacation." and Scott could hardly believe it. He feels terrible, and here, I've been dragging him around like a rag doll. It's been worth it. The kids sorely needed a break and have played joyously with cousins and newfound friends.

So, we're headed to my nephew's mission farewell this afternoon. He's going to England.

I think it's amazing that the Lord sends nineteen year old boys to preach the gospel for two years, and in spite of themselves, they really are able to share the gospel and make a difference. Impressive.

Run away

I couldn't take the bleakness anymore, so I just packed everyone up and hauled them to Utah for some sun and fun....... too bad the snow followed us.

Oh well, the kids are having a great time at Jan and Bill's house. I am hoping to take them to Springville to play with cousins for a bit. My sister is coming to shop at IKEA. Scott is going to relax/be lethargic here at the house in comfort. It promises to be a pleasant day.

I did call the nurse coordinator to let her know that we are here in SLC for the weekend, and that it would be really convenient to go for transplant anytime now. She laughed, but I am quite serious and would love to extend our stay.

ok

I called Salt Lake, yesterday, concerned at the gradual loss of ground here: more yellow, more lethargic, balance issues............ The basic message from our dr: He's still at the top of the list; we haven't forgotten him; liver disease stinks; waiting for transplant also stinks.

So, tell me something I don't know.

We're basically ok. Scott's functioning on a basic level; still breathing, gagging down food, pain's controlled. We were able to go for dinner with the Merrills, last night; had a fabulous time. I'm thinking about hauling everyone down to Utah for the three day weekend; hoping to see something besides grey snow; kids need a break from all this trash.

Tuesday

I guess I can see why C would be upset. It's tough for a 4 year old to understand that, no, she can't have braces put on today like N; and no, she can't get glasses like JA. After all that, and the fact that I forgot she was with me, and left her in the van while running an errand; she just melted down.

So, in a lame attempt to soothe the wounds, I broke the bank for the third time today, and took her to the dollar store. She wisely chose a yellow hat, an easter basket, and my little pony stickers........ love the dollar store.

I did get a lot done in spite of the running around. I framed a whole wall in the basement all by myself. Scott is pleased with the progress; he told me he thought that hideous stone fireplace would be there forever. ......oh, ye of little faith. Ha! ..................My father will be so proud.

Scott's unbelievably miserable with the fatigue and stress of this gig. He didn't sleep well last night, so he slept all day, so he won't sleep well tonight, so he'll..................

I'm fighting against my angst in why we are having to wait so long for a transplant. People die every day. Isn't there an extra liver out there, somewhere? Maybe, God has forgotten us, but I don't really think so. Perhaps, God is giving our donor a little more time........ There's a kicker; no matter how hard this is for us, it's going to be a million times harder for someone else's family.

Monday

So, I came to shut the computer down, because I am doing some electrical stuff and would prefer the power to be off. The thought crossed my mind that, perhaps, right now is not a good time to be doing this, but what's the worst thing to happen.... electro shock therapy?

No worries, then.

Scott's ok. He didn't sleep well, last night, so he's sleeping all day, so he won't sleep well tonight, so.............

sunday soapbox

The Lord is good to me; there's always an attitude adjustment right when I need it.

Dawn knows I am well acquainted with a certain brand of hell, which is why she me called before visiting her dear friend at the behavior health center. Yes, I do happen to know what might help, and it really is what I need right now, at this absolute, very moment, thank you.

So, I pulled out a devotional talk given by David A. Bednar in 2002, when he was yet president of BYU-Idaho. This was a gift that came to me through the radio, as I was driving and deciding exactly how I would kill myself the next time I went to hell.

Everyone has pivotal moments , but I consider this to be the most significant crossroad of my life. It was the first time I understood the principle of grace; that the atonement was much, much more than I imagined; that I was not meant to save myself. After years in the darkest place, I was able to gradually find light and life and happiness. Truly, if anything it's this, my testimony of grace; of Jesus Christ, that has carried me through this last year.

Also true, the hells still come. They are the worst in these long, winter months, but even right now pales in comparison to the severity, duration, and frequency that they once were. There's hope and a better perspective of what I want, who I want to be, and how to get there. I just needed a little reminder.......... she doesn't read my blog, but thanks Dawn.

...... ok, ok, and praise God, too..... do you think He reads my blog?

It's not required reading and there won't be a test on it, I promise, but it's good:
www.byui.edu/Presentations/Transcripts/Devotionals/2002_01_08_Bednar.htm

So, Scott made me a nicer, more readable copy. If you email me I will send a pdf to you, even if you are a lurker who does not know me from Adam.
bbfranson@mac.com

saturday

Scott has had a good day, whew. Translation: pain well managed with pills; nausea managed with deep breathing; went to Leah's house for a diversion, thanks.

I have had a super black, brain dead day.

I'm really just ticked that we didn't go for transplant last night. I projected positive thoughts into the cosmos and packed for everyone with high hopes....... nothing...... stupid book.

The kids have seen this brand of insanity before, and know to stay away and tread softly. Meanwhile, Scott cautiously slides Dr Pepper my way, hoping to appease the raging beast. Thank goodness, it is temporary; I always come back........ actually, it's feeling permanent this time.

Tomorrow's Sunday. We are going to an earlier ward so we can meet family for dinner out at my parent's.

Honestly, we are going to a different ward because I don't want to talk to anyone I know, but still want to take the sacrament. I am in a dark place, and anyone who innocently tells me we are looking good for what we've been through might get their face ripped clean off.

No, I'm not overly sensitive.

I'm tired.


p.s. No, I wouldn't really rip anyone's face off; I would just swallow my spew and save it for my blog........ this blog is so handy.

a bit of good news

Scott's not doing great. He's having bipolar bowels, looks like death and it's driving me nuts. I just can't get over how fast and hard he crashes, and this is even after we went for fluids instead of dinner, yesterday.

Oh! There's good news, though. Un-Brella has been nominated for the Beehive book award. It means that all the schools and libraries in Utah will be purchasing his book. Children will vote for their favorite books and the winner is announced Spring 2009. Lots of libraries buying books is good.

sweeter, please

Anyway, we've been invited out to dinner, tonight. I need to sweeten up, because Scott is excited to go, and I don't want to ruin it for him. Everything's all fine until I open my mouth; ugly things come out and then everyone, not just me, is unhappy. I might just have to fake laryngitis and avoid speaking altogether.

bring it

Normally, a few quiet days would make me really nervous. Without fail, they're the calm before the raging purgatories. But, I am well rested and yelling, "Bring it on!"

Scott's not slept well, but he seems a bit more stable; more comfortable. He's even working on some new artwork. You can see it at scottefranson.blogspot.com. I'm so happy to see him making beautiful images, again.

I enjoy Scott being stable enough that I can ignore him altogether. I did buy him a Jamba Juice this morning to ease my guilt over not paying any attention to him, but there's not much guilt to be had. He didn't even notice that I had gone for errands. I'm on my way to lunch with friends, and he can fend well enough without me.

breathe easy

I'm so grateful for a breathe easy day. Too bad I'm too tired to flesh it out for you. Just know that it included good kids, good friends, good laughs, lemon bars, brownies, and a fortune cookie that read, "You will receive an unexpected gift from an acquaintance."

pathetic

So, anyone who doesn't know me well might have said, "Wow. She's on the verge. Oh, make that over the edge." But my dearest friends will note that it was an improvement over last time. For me to actually say the prayer even though there was cry/snot running down my face, instead of just leaving the pulpit sobbing, is huge.

I don't actually have a fear of speaking in public. It's more a phobia of being emotionally out of control in public. Unfortunately, most everything discussed in church is near and dear to my heart, and the harder I fight not to be emotional, the worse it is. I'm pale and in tears before I even say anything. Pathetic.

Today, Scott worked hard to be a person in spite of feeling really awful. We hosted dinner with our parents and went to a birthday party at my sister's house. He did a great job.

I hauled him to town for labs, tonight. Hopefully, we will be ahead of the game when I call SLC in the morning. With so much pain and his color a more intense yellow, who knows what they will say. He doesn't want to go for any reason other than transplant, but I don't know how much more sick is tolerable.

normal

Yesterday, I made a big list of jobs for the kids. M. was so excited, "Oh! We're back to normal life. I'm so glad." It was just a fart in the direction of normal, but comforting nonetheless.

Scott's still on antibiotic, or I would've called the dr. He has had troublesome liver pain since the drain was adjusted, and it still leaks............

I won't say it. My mother reads my blog.

.........Ok, so I won't write it.

A couple of years ago, the kids and I caught a little garter snake, and put it in a 2 gallon jar on top of the freezer in the garage. We have a catch, observe, try to release before it dies, policy. Apparently, the snake was big enough to climb out of the jar and slither away, because I couldn't find it, and assumed it was safe in some corner stack of scrapwood. It was a shocking discovery, this poor snake, half in and half out of the freezer. I felt bad, but feel worse now for it, after squirming through this situation.