Sadness. And Mothers.

Trigger warning: Sadness. And mothers. Clearly.


I learned this summer, three weeks ago, that my mother is now in late-stage Alzheimer's, and has probably about twelve months to live.


Womp womp.

I learned other things this summer too, things I want to share with you, but I couldn't put this one in the same post as all the bright and happy things. I just couldn't. They can exist on the same blog, and in the same heart, but not in the same post, not today. (Link to the bright and happy things forthcoming, if you'd like to read them. Watch this space. If you don't see a link on Facebook or wherever when that goes live.)

(Also there are other wonderful, funny, cheery, and deep posts over at the linkup on Emily Freeman's blog, here! And there's still some time to join in, if you want!)

A Day (and Nights) in the Life of a Cholestasis Patient (and Stay-at-Home-Mom)

If you're like, "Whaa? Chola-who?" there's this other post that I wrote. It's long, but the basics are at the beginning. And links to infographics and stuff.

I apologize for the length, for once again going on and on. You'd think a person couldn't write this much about one rather uneventful day. You'd think. If you don't want to hear lots of little details about my life and brain space at the moment, this isn't the post for you.

Most who know seem to say there is no "typical" ICP (Intrahepatic Cholestasis of Pregnancy) case or patient. Certain things are more statistically likely, sure, but... well, there's a lot of variation in several ways. On top of that, this isn't necessarily a typical day. It is... a day. Take that for what it's worth.


~

Wednesday, September 9th, 2015

Six weeks of Cholestasis down, maybe two to go

Took Benadryl last night, so actually got some good sleep. (For the sleeping pill factor, not the itching factor. My itching is caused by bile acids, not histamines.) Woke up once around 3 or something and felt very awake, was frustrated that this was even with Benadryl, but then... apparently fell asleep again. Yay! Woke up again around 7:30, then on and off back to sleep. Ribs hurting, but some sleep. Think I actually rolled over and checked my phone and Facebook notifications around 9:30. Thanks, John!

High-Risk Pregnancy and Feeeelings

Well, it's back. Intrahepatic Cholestasis of Pregnancy, ICP. (In the past I've generally called it Cholestasis, which seems clearer than using an abbreviation, but... ICP is shorter to type.) As of a few weeks ago, the night of July 28th.

No, I haven't been back to the hospital yet. This is from my induction with Gracie. It just seemed... fitting.

Sorry, this is going to be long. Very. This should probably be split into four, but it all goes together so I'm going to leave it together, sorrynotsorry. I have a lot of feelings, and it seems like a lot has happened in the last few weeks. And some backstory is necessary. The "tl;dr:" version? High-risk pregnancy MESSES WITH YOUR HEAD. 'Tis a roller coaster.

Radio Silence

ETA: Trigger warning: Miscarriage

Or: All the Losses.

But that title feels too much like tempting fate. It's like when I had Cholestasis of Pregnancy, and so many times I wanted to say something like, "I have all the itchy!" except I'd read accounts which had shown it could get much worse.

Yeah, so I can be overly literal. What's your point?


I should probably explain where I've been for the last half a year? I wrote this post, everything not in italics, on March 15, 2014, but couldn't (or wouldn't) publish it yet, for various reasons. And then because we moved, as I mentioned we might in the post; a thousand miles north, and I was swamped. Also other things happened, and I was decompressing.

I thought about publishing a version more edited and updated, but I like the snapshot it creates as is. So I'm going to wait until later to give you more current details. Here, have a piece of a sad update:

Sorry for the long silence here. It's been... interesting. A lot has happened. As is often the case with silence. This year has paralleled 2012 too closely for comfort.

In the ten Christmases since I graduated from college, nine of them since I married, most of those years I've wanted to send out a Christmas letter. I've never done it, for one reason or another.

In the last few years, part of it was working at a liturgical church. Christmas is the Crazy Time. It's not enough that it's such a big holiday, Easter is that, but isn't as bad. It's also the year-end projects, and all the things to finish before going out on vacation.

So surrounded by liturgical symbols and words about Advent being a time of quiet and contemplation, I'd work overtime every day, then collapse at home, too spent and exhausted for thought. This last year, on my last day before vacation I worked almost eleven hours -- which perhaps isn't so very bad, except that it's exactly double my official office hours.

After that I was silent because of vacation. We went to Texas to see friends, and it was wonderful. Truly restful for me, and finally, a bit of that quiet and contemplation I'd heard so much about. Space, at least, to reset and recover. We stayed through the beginning of January.

January. At first there was a lot of adjustment, coming back to work. A new boss, other things. Then I was simply silent because I'd fallen out of the habit of blogging. I almost posted again, but...

The last week in January happened. I suspected, then found out I was pregnant. We didn't know how we'd afford a second child, or how we'd make room in our little house. Somehow, we would make it work. Somehow. I didn't know how I'd make it through work with morning sickness, either. It was already much worse than the early morning sickness with Gracie (codename). Make it work. Somehow.

The next evening Gracie suddenly came down with a high fever. We gave her Tylenol, and Tylenol, and more Tylenol... not all at once, of course... and I woke every couple hours in the night to check on her and make sure her fever didn't shoot up again.

The next day, the last day of January, I stayed home from work to care for her. But later in the day John came home, and I was called in to work, to find out I was laid off and turn in my keys.

The next month came with big decisions. Which direction to go in. An opportunity which seemed like it would have solved all our money problems, but may well have created new sorts of problems. We turned it down. There are still more decisions, and we might move. Also there were family events, more development to the tragedy I can't talk about.

Towards the end of February I went in for my first ultrasound. Only to find out our baby's heart wasn't, isn't beating. A missed miscarriage. It's been about two and a half weeks now, and still my body hasn't realized.

In my next appointment, the follow-up a week later, I thought to ask, and found out that his or her heart must have stopped within a few days of the ultrasound. The machine measured its growth to the very expected day -- 9 weeks, 0 days. So within a few days -- the margin of error.

My mother continues to decline. More than I've let myself see, think about, or admit. I don't think she remembers my name; she certainly doesn't remember my daughter's, but she loves to see her. I should take her to go visit more often, especially now that I'm a stay-at-home mom. Especially before we move, if we do.

All the loss.

But no, I know it could be worse.

What's my point?

I don't know, how can I know yet? I've barely written since that last week in January, and I process through writing. But I'm in a time of waiting now, and I think I'm beginning to come back to myself.

I want to be honest, here at Quettandil. I want to be like The Actual Pastor, and "Living my life as is, instead of as if." Heh. If this update on my life is my poor man's version of a late Christmas letter, it must be the most pathetic one in history. Now, if I were actually like The Actual Pastor, this post would both be deeply honest AND super inspiring. Somehow. I... don't know how to do that, yet.

But here it is. Why I've been silent, and the frame and context for whatever follows. If we move, I may not have much time to post again for a bit.

"DST is eeeevil," or: Mixed Feelings

I'm finally going to participate in RambleRamble's weekly linkup. I've meant to, many times, but never quite made it before.

The prompt: "Need to get something off your chest? How about sharing a good rant with us?"

My snarky post would definitely qualify as ranty, but I'm not going to get that one ready by midnight tonight, so a different post and rant it is. I'm sorry if some of the sentences here don't make sense or don't scan easily. I wrote this kinda quickly (for me). I mean, I composed parts of it mentally in the wee hours of the night last night, and mostly wrote it down (and edited, and added the pics and links) during my daughter's naps today. I'm not sure if I caught and clarified all the confusing bits. I tried.


Unfortunately, this rant is going to be watered down a little bit by the mixed feelings. Not that I have mixed feelings about Daylight Saving Time itself, the concept of it. Far from it. Pure evil. But... Well, I'll explain later, after the rant.

Let's start out with a couple little quotes from Facebook. This is what I've already said about Daylight Saving Time ending. In comments on a status.

"As a fellow new (-ish) parent, I'm terrified of what this means for the time change this year. I mean, fall is supposed to be the good one! The magical extra hour of sleep! But I'm sure that as soon as 4:30 rolls around my girl's gonna be like, "Mama, Mama! I'm so happy, Mama! Aren't you? Isn't life great? Let's plaaay!!!" (Roughly. She doesn't actually talk yet.)

Somehow, I'd always heard from parents that Daylight's Saving Time especially sucks when you have kids, but it seems like I only heard about how hard it is to get them to go to bed when it's still light outside, not how hard it is to get them to SLEEP IN JUST ONCE FOR THE LOVE OF ALL THAT IS GOOD.

Weekends are when I get more sleep deprived. Because even after almost a year, I can't seem to get it through my head that I can't stay up later on Friday night. Oh, and the tireder I am, the more I make stupid decisions... like staying up late. It's like an infinite loop of tired and dumb.

Phew. Apparently I had a few things I wanted to get off my chest on this topic. >_>"

Later I said,

"Seems I spoke too soon.

Best. Jinx. Ever."

And,

"She'll sometimes sleep longer if we let her cuddle in bed with us. And there's no light anywhere.

Of course, other times she just climbs all over us, scratches our faces..."

I saw one person on Facebook defend Daylight Saving Time on the grounds that children were walking to school in the dark. Please, think of the children!

Um? Wait, when were they walking in the dark? In the winter? Fall is when DST ends, sooo... yeah, no time change would not affect that a whit.

Even if it did, um... maybe we should start school later in the day? Just a thought? I mean, I know there can be some logistical issues, but if the alternative is Daylight Freakin' Saving Time, seems like a good idea to me.

That's the other thing. Why are we trying to save light in the summer? It's summer! There's plenty of light! What, because there's so much of it, so we're trying to stockpile it for the winter? Sorry, I don't think it works that way.

This is probably a good place to link to The Actual Pastor's very nicely ranty post on Daylight Saving Time: "The Real Reason We Observe Daylight Saving Time: to Kill Parents." It is bitter and lovely.

Yep, once upon a time, at least the evil of the time change in the spring was sort of kind of counterbalanced by the joy and magic of the extra hour of sleep in the fall.

But now? Now that I'm a parent? There is no magical extra hour of sleep, there is only pain and anger. I see Daylight Saving Time's true face now. There is nothing good in it, it is rotten to the core. It should die a terrible, painful death, be burned to ash, and have its ashes scattered to the four winds so that no one might ever reassemble the pieces and resurrect the practice.


And yet, for all that (and I do believe that), I can't end on that note. Last year my daughter was born on the day of the extra hour, and I can't think of it without being reminded of her.

It's kind of hard to maintain the rage of being woken up at 4:30 in the morning because of the most retarded, useless practice ever... when you remember that at that time last year you were also up, because you were in the middle of giving birth to your child.

To be mad about not getting that extra hour of sleep you expected (and maybe to actually lose sleep because you foolishly went to bed planning for it, even though you knew it was not to be), when last year you hadn't slept soundly, for... well, for weeks actually, to a certain extent... but especially not since you checked into the hospital approximately 36 hours earlier.

To be angry that the good chunks of sleep you did get were so short, when last year the epidural gave you some really nice good chunks of sleep too, at least when you weren't literally shivering uncontrollably from a reaction to it, just trying with all your might to keep your teeth from chattering. Or until you were woken by alarms at your baby's heart rate, and a lowering of the pitocin. Or woken by nurses giving you antibiotics for an infection. Still, you think back to the beginning of labor, and ah, that epidural gave some good sleep!

Daylight Saving Time last year. About an hour and a half before Gracie's birth.

It's hard to measure pain sometimes, it's so subjective. Even more so, memories of pain. But there are objective data points, here and there. At first I remember how I was handling it, how I thought I could've kept on going, if I hadn't learned I had to keep going for so long, that I was only dilated 1 cm.

Then I remember. I remember when the labor started, how I could laugh with people in the room, and check Facebook. How that quickly changed, how soon I could only watch a bit of very mild TV for distraction -- had to be a calm nature channel, nothing stressful or demanding to my brain, my attention.

The contractions. The pain always lingered, so to speak, after the needle on the graph stopped showing the contraction. It took a little while to come back down to normal.

Soon I could only watch the TV as a distraction between the contractions. But soon after that there wasn't really any "in between." Maybe there was officially, but the pain never went away. Between having had Braxton Hicks contractions that would last five minutes or more, sometimes, and as little as a minute apart (or less), possibly because of an irritable uterus that wouldn't completely relax for twenty mintues at a stretch at times, and then add in a low level of pitocin to start up actual labor? Things became not happy.


Not that, you know, labor is normally happy. But I've heard inductions can be worse than "regular" labor, and I'm pretty sure I've heard there are supposed to be breaks between contractions, at least until close to the end. Unlike some of the stories from women with an irritable uterus.

I used to get really bad menstrual cramps. Bad enough to throw up, once, and very close to that many, many other times, as I realized after the vomiting incident. Labor... was kind of, sort of, a little like that? You know, besides being a ton worse. But with cramps, moving around, tossing and turning from side to side, will help a little bit, for a moment. With contractions (real honest-to-God ones, not the Braxton Hicks), it's like if you move even a fraction of an inch, you'll be impaling yourself further on the metal pole that's rammed down your center. All you can do is breathe and count, and then you can't even do that, all you can do is exist until it's over.

That's my experience, anyway.

Sorry, I don't know when this became a rant about childbirth. This is not the next part of the pregnancy complications and birth story I've been meaning to tell. But, it's written, I guess I'll go ahead, out of order or not. And I'll remind you that expressing the difficulty of something does NOT mean the person talking thinks it was a mistake, or not worthwhile. Momastery's "2011 Lesson #2: Don't Carpe Diem" is relevant here. None of this diminishes my love for my baby, not even a tiny little bit. Similarly, talking about how hard parenting is, or how I miss long stretches of sleep? Yeah, the appropriate response is not, "Well you shouldn't have decided to have a kid, then." Just in case you were wondering.

Some people say you forget the pain when the child is born, to which I give a very mature and dignified, WTF??!

I mean, I know the Bible has a verse about how a woman forgets her pain for the joy that a child has entered the world (John 16:21), but I'm pretty sure it was being poetic, and speaking very generally. I've heard women talk about this as though they literally forgot. That that's why they would have another child, because they actually don't remember what it was like. And I'm not just talking, "Oh wow, I forgot it was this bad," but like, forgot. the. whole. thing. Seriously? I mean, I was skeptical before I had my daughter. My brain, as far as I know, just doesn't work like that. I didn't think childbirth would damage it in such a way that that would change. It didn't. Childbirth was... memorable.

So, anyway, since I DO remember all that, it's hard to be very mad about Daylight Saving Time, somehow. Well, other than Daylight Saving Time never being an important or necessary part of bringing a child into the world. That little detail.

I almost wish it was easier to stay mad. Like I'm the jerk invalidating my own emotions, saying, "You think that's bad? Wait 'til..." Bleh. Well, here's a compromise with myself. I can be mad about lost sleep the other 364 days of the year. I can sure as heck be frustrated that, with a few exceptions, I haven't had more than four or five hours of sleep at a time in over a year now, or even as much as four at a time in I don't know how long now, maybe weeks? That ohmyGOODNESS I really need to night wean this child.

But I love her, and a day that reminds me of her birth can't be all bad, despite itself. Even if the concept of DST is pure and unadulterated evil.

Around 8 hours after her birth.

March Madness

Six posts in February, none at all in March, and none until now for April. Sorry. For once it isn't just my general inconsistency. "March Madness" has a whole new meaning now for me and for my family.

February 29th we received bad news, about which I will remain vague. Another first. I will not be "painfully honest" about this one.

Wait... saying that and linking to praise of my "excellent" writing for the Alzheimer's Competition is kind of a humble brag, isn't it? Though the bit about "sometimes painfully honest" made me wince? Um, sorry. But I'm leaving it in. Someday I'm going to write a post about why I write the honest painful stuff.

Back to the subject at hand. Of all the people in my husband John's immediate family, I'm the least affected, so it isn't mine to tell. But it was bad, and had Ramifications for the next month. And the rest of our lives, but, well, it all started last month. Last month was bad.

March 2nd John's mom and sister Beth flew out here, and Beth began sleeping some nights on our couch. We'd already been planning on having her live with us this summer, February 29th just moved it up. It's been good, having her around.

March 6th I had an appointment with my medical doctor about depression. I may tell my whole depression-but-not-exactly-clinical-depression story in another post, but for now I'll just say the doctor annoyed me, but did conclude after a questionnaire that I have mild to moderate depression, and gave me a referral to the psychiatry department covered by my insurance.

March 12th I found out I'm pregnant! Most of you already know that, but for any strangers who read my blog, if you care, I'm pregnant. (Okay, even if you don't care. I still am.) Don't worry, I probably won't be turning this into a mommy blog. I'm sure there will be occasional posts -- I've had more than one facebook status update about how WEIRD pregnancy is, and I'm pretty sure parenting just continues the weirdness. I'll want to write about it. But it won't be the only thing I write about. I'm pretty sure. Feel free to complain if it is.

But anywho, I concluded my weird sharp fast intense mood swings in February were probably hormone-related, just as I'd thought. Only because of pregnancy, not because of the last vestiges of adjustment from stopping birth control pills. Either way, take that, annoying doctor who had the nerve to claim depression can only be caused by problems with serotonin! ::sticks out tongue at doctor, does not say "ahh"::

I may write more about that, later, too. Probably still in the post about my sort-of-depression-but-not-really-clinical. I've got a rant inside me just waiting to come out.

March 13th, after telling my mom, I announced the pregnancy on facebook, with this picture:

 (I am not, however, announcing twins.) John announced it by asking, "what's a funny way of letting people know you're gonna have a baby?" With all the bad things going on, we wanted to tell people our good news right away.

The rest of the month sort of continued in a fog, with me spending ten or eleven hours in bed pretty much every night. Turns out you get really tired in early pregnancy. Everything I've read and all the mothers I've talked to have assured me this is very normal. It's better now, I'm down to... oh, about nine.

Which reminds me. To those to whom it might be relevant someday: earliest signs of pregnancy. Not necessarily morning sickness. This is important (okay, -ish), because there are things you're not supposed to do when pregnant, like take Advil. So. Pregnancy can feel JUST LIKE your period is about to start. With cramps. If you get very bad cramps, of course you'll want to practice preemptive pain management. That's the only way to avoid being incapacitated. Well, turns out that not only will you not want to after all, should you be pregnant (at least, not with Advil), but it probably isn't necessary. Since they're a different type of cramps, they don't follow the same patterns. It may feel exactly the same at the beginning, but it probably won't grow, may not even last very long. You may still need to change positions a bit -- they can get bad enough to wake you up at night, but I found that when I got up they normally went away immediately. Credited that to the Advil at first, but now that I know the cramps had a different cause, I don't think so.

Alright. Close TMI section. March 26th I had my prenatal registration thingy appointment that Kaiser does, mostly administrative, and found out later that day with the test results that my red blood cell count was low.

Also March 26th, I believe, Mom (John's mom) and Beth started helping us pack up our stuff. We would be moving from our one-bedroom apartment to a three-bedroom house a few blocks away. Renting. Beth living with us there.

March 30th was the first real prenatal appointment, and I saw my baby for the first time. Little tiny tiny baby! My official due date is November 9th, but based on his/her size in the ultrasound, they may change it later (after a second ultrasound, I guess) to November 15th. I started taking iron that night.

From that appointment I went to our new house and saw it for the first time.

March 31st was Moving Day! I did a little bit at first, moved a few small things to my car, washed some dishes... and then I crashed. Watched some of our volunteers' kids at the house, then just lay on the sofa. Later took my temperature and I had a real low fever, 99.6. Fun. But it went down. Since I was fighting a cold and feeling weird the fever didn't surprise me much, but it did freak me out a little. Higher fevers are dangerous for babies. Once it went down my freakage went down, though. I was very, very, very tired that day. So tired.

So that was March. Exciting, and, um... lots. I feel like I'm coming through the fog of exhaustion and change now, though, so I may be a little more present from here on out, for a while. Maybe.

Don't get me wrong, there have been joyful moments, too. For sure. Even in March. The baby and new house have been amazing, wonderful. I love my sis and mother-in-law, and spending time with them. I'm very, very grateful. Just... that's my super long explanation for my absence. Okay, and a bit of whining. Because.