Ordinary Time

Well, it's been a week. Shall we dive in? The days preceding Christmas and Christmas Day itself were fairly good in terms of R.'s regulation. From the 26th on... really not so good. Really, really not good. So not good in fact that we ended up in the ER last night. As much as I was grasping as straws with the PANS/PANDAS post, based on how she responded to the Ativan in the hospital, this really just could be anxiety/trauma related that hijacks her brain. Enough anti-anxiety meds and her brain can calm down. The ER doctor and I agreed the a more effective anti-anxiety med is what is needed.  Because I'm really good at leaping to the worst case scenario, I'm still keeping a reference for Anti-NMDS Receptor Encephalitis saved on my phone because she also fits the profile for this potentially deadly diagnosis.  No, my own brain has not been a fun place to live recently. I hate that the only way parents can convince the medical establishment that something is as severe as w

Ten Things I Like About a Winter Thaw 1. That my contacts don't try to freeze to my eyeballs 2. I only have to put on one layer of outerwear 3. The barn hydrant is not frozen 4. You don't have to scrape car windows before you drive 5. The stock tank has liquid water in it 6. I can take the blankets off the horses 7. We go through much less hay 8. I don't have to wear a base layer under my regular clothes 9. The chickens are willing to exit the coop 10. Going outside takes no internal pep talks Ten Things I Don't Like About a Winter Thaw 1. Mud 2. Shoveling previously frozen horse poop out of the dry lots 3. Mud 4. Mud 5. Mud 6. Mud 7. Muddy horses 8. Mud 9. Mud  10. Mud

When P. took her most recent job (as a groom at a local stable), the position had the potential to come with housing. Today, she (and D.) moved some of her stuff over and she'll sleep there tonight. This makes another child out and on their own. We haven't sorted out what will happen to her room once she has things moved out, though there are younger who have definite opinions on that matter. Onto the letter portion of the title. I didn't blog about it, but since the 26th, R. has been struggling again, this time with behaviors that are out of the ordinary even for her. Like really out there. So, grasping at straws, I googled PANS/PANDAS. I have been around long enough to know this can be a thing and we did spend the past month passing various illnesses around. Well, when I looked at the symptoms, she ticked every single box and the behaviors we have been seeing could all be explained by this.  So yesterday, after my little session with Google, I immediately called our PCP. 

I took very few pictures from our day. I always forget because I'm so busy enjoying it. Or because it is all we do is cook food with a few presents in between. It is probably a combination of the two.  That said, here are all the pictures I took. The table set for Christmas Eve dinner. I'm happy to report that the tablecloth fit perfectly. Presents under the tree. Waiting to come down the stairs on Christmas morning. Some adult children had already arrived, but didn't feel the need to join the photo. Then later on, in between meals, I got everyone to do a group photo. It is rare for us all to be together in one place and I like to take advantage of it. I shared the best photo on Christmas, but here is a classic outtake. You really need to enlarge it to see everyone's expressions to gain the full enjoyment from it. Then we headed over to my sister-in-law's house for Christmas dinner with extended family. There are always Christmas crackers with paper hats in them. Ye

Today I thought I'd share the gifts I made for Christmas. Tomorrow I'll share the few photos I took of our Christmas celebration.  First up are the dish towels I designed and wove. This was my first time creating my own pattern for a floor loom rather than using something already written out. My mother received several of them (the colors match her kitchen) and I have the remaining towel to MC. and W. Here are some close-ups and farther away shots of the four towels. They are each slightly different. Next are some of the drier balls I made. One was made from the combing waste from my very ongoing project of the fleece I dyed. The others are made out of wool yarn that was loom waste from making things on my rigid heddle loom. I ended up with six total, but evidently forgot to take a picture of the last three. The three oldest adult children each got a pair. Finally, I had showed you the fabric I was weaving with some of my handspun. Here is the pillow I made for H. out of it. I

Merry Christmas from the Curry Family... all 17 of us. This is my best gift, having everyone all together. 

It's a very positive sign that I can go back to a more normal blogging schedule.  It's cold. For two days we've been in the negatives with crazy wind chills around negative thirty to forty. We are supposed to start slowly warming up tomorrow with the high temperatures in the single digits. But at least we'll be in the positive numbers. The hydrant in the barn held out until last night, so we've been hauling water to the barn all day. I actually couldn't believe that there was running water when I fed the horses dinner last night. Wool is your friend! Now, I know I have a bias towards wool anyway, but I've been experimenting with what combination of layers work best. This has been important because the zipper broke on my good winter coat a while back and I never did anything about it. Here's what I've learned. A good base layer (some high tech fabric or silk), plus a light wool cardigan works fine for indoors. If I add a heavy wool sweater plus a flee

W. and MC have given me permission to share their big news. As of this morning, they are officially home owners! It's been a whirlwind month as they went from casually looking but not quite ready to buy to finding the perfect house and a thirty day closing.  I actually got to see the house with them in the casually looking phase and I fell in love with it, too. I'm so happy for them. Want to see a few pictures? And one of the best parts is that they are only twenty minutes away from us. Oh, and the acte plus of land is kind of an exciting piece, too. So the original plan was, close today, moving van tomorrow, and also tomorrow J. would drive the van to their apartment in the city to move plants, animals, and things they didn't want to trust to the movers. It was a lovely plan. But then there was this winter storm that turned up which kind of put a hitch in the nice and tidy plans.  There were alternate plans made. Plans which would have been easier with a more accurate fore

When R. came home, we thought we were prepared. We had experience with Linear Nevus Sebaceous Syndrome and delays and trauma. Yes, we were over confident. For the first year or two, R.'s behavior was seemingly erratic and baffling. We couldn't figure out what was caused by what, what was correlation, what was adjustment, what was trauma, etc., etc.  The biggest breakthrough was figuring out that R. had both epileptic and non-epileptic [PNES] seizures. This was a start. The next piece was heading to the ER when R.'s behavior was beyond our ability to deal with. Ativan turned out to be the thing that stopped the non-epileptic seizures. We found a psychiatrist and had another prescription that allowed R. enough peace so that we could begin to do some work on attachment and emotional regulation.  There was still the mystery of why, every so often, she would still have periods of extreme disregulation. For the three weeks following Thanksgiving, R. was not in a good place. I'

I was idly scrolling through FB the other day (because that was something I could do while sitting on the couch), I came across someone's post where they said that they were going to be doing a more modest Christmas this year and then laid out what they were doing. I was a little undone for a moment because what was described was our typical Christmas... Christmas pajamas, a find gift, a book, and something useful (generally.) It has never been set in stone, but that was kind of the broad outline. By the time you add in gifts from siblings times twelve, well, no one was wanting for gifts. We will be having a more modest Christmas this year. While I did buy some new things, much has been thrifted or made. In all honesty, this is actually not different from past years, I've just gathered fewer gifts per person. In talking with my children, they're actually okay with this. Their lists were very modest and I've had more questions about who will be here for the holiday and w

With life having calmed down enough that I can think about other things, such as Christmas, I suddenly remembered something today. Earlier this year, like January, I went and took advantage of Christmas fabric being on sale and bought yards of a print that would be suitable for a tablecloth. The idea was that sometime in the summer, I would turn this into an actual tablecloth and be prepared for Christmas.  My problem with planning ahead like this is that I forget about the plans. I'm pretty sure I didn't think about that fabric once all summer. Since I only just remembered it, you can be sure it was never turned into... anything. I'm pretty sure the only reason I remembered it today was that I was counting heads for various meals and thinking about how to seat everyone, which made me think tables, then table coverings, and then... Fabric! Here's my issue. We have a very unusual table at the moment to make the space work for all of us.  It's square. And while it wor

Does it get better than this? D. home from school, TM stopping by for dinner, singing carols together after dinner, family movie night, and R. continuing to improve and maintain equilibrium? No, I don't think it does.

Another decent day for R. It allowed me to head out and do some Christmas shopping. I had gathered a few things, but in four hours of intense shopping, I think I'm 95% finished. Have I mentioned I don't really enjoy shopping? Or shopping for long periods of time? Or shopping on weekends? So shopping for four hours on the Saturday before Christmas Eve/Christmas wasn't really a goal of mine. But since it's the time I had, it's what I did.  But other than just the relief of having it done, I also got to have the reward of knowing that good friends from Evanston were driving out to join us for dinner. We realized that the P. Family mom and the W. Family mom and I haven't seen each other since before we left for Yellowstone. That was far too long. It was good to have a chance to catch-up.

R. laughed this morning. When I heard her, I realized that I hadn't heard her laugh in weeks. Today also offered the whole household a much needed day of normalcy and calm. I am (extremely) guardedly hopeful.

At this point in our life with R, I think it is safe to assume that if you don't see a new blog post it means one of two things. Either, I have spent the day being R's external regulation system and I'm done in with no margin for thinking or we are needing to actively parent R and cannot even open the computer. Tonight is a variation of both those things, for variety, I guess.  I have some thoughts about what is going on. I also have a doctor who has decided I'm an incompetent parent, but I'm not in a position to fire her at the moment.  I have enough brain space for one small rant. When one is dealing with something like PNES, which literally no one truly understands regardless of whatever impressive letters happen to be after their name, you would think you would default to the people who actually have to deal with it day in and day out.  I have yet to figure out how to describe our last six days without resorting to a string of very bad words.  So indeed, at this

Christmas is going to be a bit frugal.this year. I am trying to do as much as possible either by making things or finding them second hand. I guess I should probably add significantly on sale because that was the bulk of today's shopping. All that to say, I have been making things, just not things I can show you yet. I am taking pictures so I can show them after Christmas. There is one thing I can show you because the person receiving it never sees the blog, but even then I'll be a little circumspect.  Yesterday I put a new warp on my rigid heddle loom. While I use my rigid heddle for very simple weaves, it's biggest plus is that it is so easy and fast to warp. Having used my floor loom for my last few projects and the multi-week process it is to measure, thread, and wind on a warp, I had forgotten how quick and easy the rigid heddle loom is. Of course, for the actual weaving it is much slower than the floor loom... Anyway, here is the warp I put on yesterday. It is handspu

Otherwise I got out of bed on two strong legs. It might have been otherwise. I ate cereal, sweet milk, ripe, flawless peach. It might have been otherwise. I took the dog uphill to the birch wood. All morning I did the work I love. At noon I lay down with my mate. It might have been otherwise. We ate dinner together at a table with silver candlesticks. It might have been otherwise. I slept in a bed in a room with paintings on the walls, and planned another day just like this day. But one day, I know, it will be otherwise.                    -- Jane Kenyon, from her collection of poems, Constance This is one of my favorite poems. This almost routine list of everyday things that are appreciated specifically for their ordinariness. It is these small things that we miss the most when life turns upside down... eating breakfast, doing work, taking walks, the ability to plan. We have had two very good days now and I am feeling calmer and much more positive about the future. I appreciate the ab

We're going to do the weekly update tonight instead of yesterday. Yesterday was a train wreck and I'll save you my rant about doctors until after I have processed it all and can be more reasonable. Suffice it to say, my children were just about to break out the popcorn listening to my end of a half hour conversation with  said doctor this morning. Life has been much, much better today and I am hopeful that I might be able to pull off some sort of Christmas by, well, Christmas. Last night K. made dinner... chicken korma and an Afghani salad. It was part of his independent study he is doing this year about Afghanistan. He did a good job. Thinking about this, I don't really understand why parents are so eager to find cooking classes for their children to learn how to cook. If the parents themselves do not know how to cook, that's one thing, but if they do... I have never overtly taught my children to cook, just enlisted them to help with dinner as a matter of routine. (Or

There is probably no better indicator that life is starting to go back to normal around here than the fact I have a new book that I am excited to start. (And I just want to mention that R. slept in her own bed without waking up for the first time in weeks.) The book is Peak: Secrets from the New Science of Expertise by Anders Ericsson and Robert Pool. One of the things I'm enjoying about the Creativeness and the Brain Great Courses course is the fact that the teacher is always referencing interesting books. Quite a few I have read but some I haven't. This is one of the ones I hadn't even heard of.  I've now read the introduction and am excited to dig in. Because doesn't this sound interesting? "But we now understand that there's no such thing as a predefined ability. The brain is adaptable, and training can create skills -- such as perfect pitch -- that did not exist before. This is a game changer, because learning now becomes a way of creating abilities ra

Other possible titles for this post include:     ... My children are rock stars     ... Anatomy of a meltdown (mine)     ... Christmas may happen after all     ... Riding lessons after sitting for two weeks are no fun I could keep going, but I think you get the idea. We are doing better. I won't say we are out of the woods yet, but things are better. I feel as though I have a new lease on life in general. (Actual title)  One of the things which significantly contributed to this is the fact that I got out all day yesterday at a weaving class. I had signed up for this class months ago. (So long ago that I suddenly couldn't remember if I had actually signed up for it or just thought about it. I called to make sure.) I really wanted to take this class and really didn't want to eat the money. R. was seeming just enough better that we decided I should try it with instructions to the masses at home that they should call if things got dicey and I would return home immediately. They

Today was sort of better. R. is still not regulated and one of us needs to be near her at all times, but I don't feel as though she is teetering on the edge of psychosis. It's a step forward, but we are all exhausted.  I was excited to see I had several books on hold at the library so picked them up on the way home from co-op. (R. had stayed home with J. who was trying to work remotely. Ha. I'm not sure how much work he was actually able to accomplish.) I needed a diversion with some new books to look at.  One of them was a book I had seen recommended about using thrift store finds in creative ways so I had reserved it. It had taken a while to arrive and it couldn't have come at a better time.  Now, I'll be the first to admit that my own mental state is not at its peak, so that could be playing into my strong disappointment, but I don't think so. I think it's just a book filled with extremely dubious ideas. It kind of seems as though the author had a couple

We are all still alive over here. Yesterday I spent nearly the entire day on the couch helping R. regulate. Really, it's all I did. My one accomplishment was taking a shower. But at least I was able to help her regulate which is more than I can say about the day before. R. did sleep last night... in my bed. I slept, but I think I am now so sleep deprived that it is going to take a few days to get back to my normal sleep schedule. I hope I get more practice tonight.  There were definite parts of the day today when R. was lucid and seeming much more like her normal self. As the day progressed, I could tell she was starting to find it more difficult to hold it together. I'm very glad we had a scheduled psychiatrist visit for Monday. We're going to have a nice long chat about rescue meds.  As I mentioned before, what is so terribly disheartening about all this is that she had been doing so well. This is entirely out of the blue. I'm also pretty sure it is not a traumaversar

The last week has been hard, but the past 24 hours have been dreadful. We haven't seen psychotic behavior like this from R. in years. If I didn't know that pretty much all the peds beds in the local hospitals were full with respiratory issues, that is where we would have ended up this afternoon. It was that bad. The only difference is that I knew she needed an IV of ativan, I just had no way to hook it up myself. Instead, we had to make due with a tablet variation which isn't quite as fast or effective. She is now calmer, but is still not fully coherent. I'm afraid it could be another very long night. If we knew what was the trigger for this it would feel more manageable, but this really did seem to come out of the blue and all of our tricks and techniques have done squat. It is so disheartening.  To think about other things, I'll share the photo of me and J. that was taken at the gala we went to earlier this month. J. finally got a copy of it. You get a bad photogr