Early Morning Homework

I woke up this morning with my daughter standing on my side of the bed.   She said, “I wrote a poem for you, mom.”  I thanked her very much and put the braille page down on my nightstand and then fell straight back to sleep.  A while later my daughter came back, this time she said she’d created some homework sheets for me.   She’d stapled the pages together but I could unstable them when I did the work, because I was going to need to put the sheets back in the braillewriter to complete some things.

She said there was one page I was suppose to write the numbers as high as I knew.   She offered that if I wanted to count higher, I could add an extra sheet on and do more numbers in braille.   I told her how helpful this would be because I’ve been needing to work on my braille.   I asked her if she was using any dot-five contractions (the newest thing she’s been learning) and she said a few.

Again, I fell right back to sleep.   When I got up a little later I realized she’d spent a lot of time making things for me.   The poem was first and was fairly short, but thoughtful.   The page said:
“A poem for you:  The sun sets at the right time every day.  So we have a wonderful weekend.”

The worksheets were another matter.   Let us say I have a lot of work to do to complete my assignment before going out tonight.   I had to do pre-work, translating the pages.   After I finish posting this I’m going to do phase two and complete the work itself.

The Big Boy Update:  Last week, before Halloween was even over, my son asked, “when are we setting up for Christmas?”   "Not yet.   Definitely not yet," I told hom.

The Tiny Girl Chronicles:  My husband and daughter are going to a Y Guides camp out tonight.   They’re about to leave.   There will be a hike and cookout and then sleeping in tents in the back yard. I think my daughter is excited.   She’s pretty laid back about it right now as they’re getting ready to leave.

Bye Bye BabyBjörn

My husband and I are going through the attic.   We’re on day three now with two more days planned before we go to Las Vegas, leaving our children behind with Nana and Papa.   Just after we return we have a bedroom suit of Nana and Papa’s being delivered to our house—which means we need to get an entire bedroom up into the attic beforehand.   And that means we need room—a lot of room.

We’re getting rid of some things we’d kept three years ago but decided we didn’t need anymore.   Three years ago the children were younger.   We had friends with young children who might have needed children’s items and, to be honest, it’s hard to get rid of things sometimes.

But it was time.   Or at least time for some things to go.  We rearranged, got some additional racks and moved lots of things around.   Or at least that’s what we’ve done so far.   But we’ve also done a lot of shoving to get things out of the way.   And shoving means we can’t get to the things behind the layers of shoved things.   So there’s more to do.

But on the positive side, we’ve purged a huge amount of stuff.   Today we got all the Halloween decorations in one place and the Christmas decorations in another place.  That hasn’t happened before.   And we have nice clear pathways to walk through.

We’ve found homes for a lot of our belongings—good homes.   For instance, our music therapist is due with her first child in six weeks.   We’ve given her some of the baby things.   Yesterday I did a super duper bleach clean up of the training toilets the children used.   It was a bit sad seeing them go so I took a picture:

On second thought, it wasn’t that sad, I’m quite happy my children don’t need them any more.   

As we were going through the Christmas things I had a box my mother had brought over with the Christmas ornaments we put on our tree as a child.   As I transferred the ornaments into a smaller bin, I remembered putting each of them on our trees as a child.  

Time hasn’t been kind to some of the ornaments, surviving hot summers in an attic for forty years, but most of them are still in good enough shape to go on our tree in the coming years.   As I got to the bottom of the crumbling box I found this:

My mother’s name is LaRose.   I don’t know if she made it or if someone made it for her.   The felt on the back is disintegrating and I don’t know how it was hung, but the cross stick is still in good shape.

The attic work isn’t done, but we’ve made big progress.   We have enough things out of the way that we can start to make space for where the bedroom suit we have in our guest room now.   It’s been fun going through things and most especially purging, but I’ll be glad when the job is done.

The Big Boy Update:  We cheated today.   We had my son’s parent teacher conference but no child care for my son.   We told him we were going to, “cheat” and leave him in the car on the school grounds, parked in front of the front office, while we had his conference.   The tinted windows hid him in the back and he had the car locked while we were gone.   He knew if there were any issues he could go to the front office.   Before we left we told my sone he would have screen time while we were in the conference (which would have occupied him for hours).   I told him to end his game upstairs and come down so we could get in the car to leave when I heard him call out to me, “just so you know, this thing is portable.”  We haven’t really let him know the Nintendo Switch can go places and isn’t tied to the television.   He’s apparently know it all along though.  

The Tiny Girl Chronicles:  My daughter told me, “the best part of your body is your heart."

Tonometer

My daughter (see, there I go again, starting a blog post with those first two words) has an eye pressure issue.   To be more specific, one of the issues with her eyes is the pressure.  Initially, after the infection or inciting cause of her vision loss, she had trouble maintaining pressure.   It was at zero for a long time and then had to be maintained by an artificial fluid, Healon, that was added into her eyes.

The thought was that her ciliary bodies that produced ocular fluid would never recover, but of all the things that have gone downhill in her eyes, this one area has regained some function.   Her eyes now seem to be maintain pressure without a problem.   Or without a low pressure problem.

The next problem (in the realm of pressure, because we have lots of problems with her eyes) was high pressure.   And this was unexpected.   High pressure we never thought we’d have.   But high pressure isn’t a good thing either as it can cause glaucoma.   The probable cause for the high pressure is the total amount of debris in my daughter’s eyes.   The debris slows the drainage of fluids.   The good news is there are drops to help—and my daughter is an expert at drops.

We’ve talked to my daughter’s doctors about getting a handheld pressure reading machine at home.   I had the idea after seeing these nifty little machines my daughter was abjectly afraid of that did a painless in-office check of her pressure.   Could we get one?   I would buy one if it would be helpful, I asked.  And yes, just like all specialized medical equipment, it was expensive.   But so is flying a child and parent to Detroit to find out what’s causing vision loss or erratic vision, so I though what the heck, at least it was an idea.

We’d been told it was hard to get reliable readings because many factors affected pressure.   And I was fine with that, but I wasn’t talking about taking her pressure just once and panicking if the reading was particularly high or low.   I was thinking with regular readings we would get an idea of what her pressure was trending towards.

But since her doctors didn’t think it was a good idea, I didn’t press it.   But I didn’t forget about the idea either, bringing it back up from time to time.  At our most recent visit to Detroit I mentioned it again to Dr. Trese about getting a monitor at home again.   He told me at Duke, one of his peers was running a trial for at home monitoring and I should ask if we could get her into the study.   He’d talk to Dr. Grace about it as well.

And that was all it took.   Earlier this week we went to see Dr. Grace and we now have an iCare rebound tonometer.



If you’ve ever had your pressure taken at the optometrist’s office, this is like the machine they might use.   Historically they used a puff of air in your eye, but the newer, tonometer technology has been around for a while now.   If you’ve had this done to you, you might have heard nothing will touch your eye.   You might also have been given numbing drops before your eye doctor came in to see you.   The not touching your eye part is a fib—it does.   But it’s fast and it certainly doesn’t hurt.

See the little doodle bobber sticking out of the one post (the one on the left is to rest on your forehead for stabilization)?  That thing bounces out and taps on your eye.   That little piece is disposable.  It’s housed on a tiny, thin piece of metal that magnetically sticks inside the main housing of the unit.   Tip the unit over and it falls right out.   But held upright, if you press the button it bounces out and depending on the resistance it gets when it touches your eye, it determines a pressure.

To get an accurate reading it needs to do this five times.   My son and I have tried it and we didn’t have numbing drops.   You can really barely tell it’s there.

What we’re doing is recording the data from my daughter’s readings, done twice per day, into a spreadsheet so we can get data over time.   There is also a web site we enter the data into so the study coordinator at Duke can follow along and make recommendations in changes in medication as necessary.   Just from the first try at the office earlier this week, we adjusted my daughter’s drops in her left eye, which was high again.

My daughter isn’t particularly happy she has another eye thing to do every day, but since it’s just been Halloween, we’re bribing her with candy for now until it becomes part of her normal, daily routing.   I’m very happy we were able to get into the study.   This is just what we were hoping to do at home but without having to buy our own reader.    And we wouldn’t have been able to get a cheetah patterned one to be sure.

The Big Boy Update:  My son wanted a new bike.  One with gears.   His old bike was much too small for him so my husband decided to get him his birthday present well in advance of his December birthday so he could use it while the weather was still nice outside.  This morning my husband put it together and this afternoon my son was off with his friends on his new bicycle.

The Tiny Girl Chronicles:   My daughter doesn’t know what she wants for her birthday.   We had some ideas but so far we’re not sure what to get her.   She says she wants a second purple yoga ball and another tigger stuffed animal.   But since she already has one of each of those, we’re going to try and find another option.

Bryna’s Birthday

Today is October 31st or Halloween so when I heard my children up early, making a commotion in the bonus room, I thought they’d be gearing up for the day’s fun at school, at the neighborhood party, wearing their costumes and, the pinnacle of the evening, trick-or-treating.

I was surprised when they came downstairs and greeted me with, “hey mom, it’s Bryna’s birthday.”  Our neighbor, and mother to two of our favorite sitters, shares her birthday with Halloween, something she said she’s never really liked.   It was frustrating as a child and as an adult she doesn’t like to take away from the enjoyment the children get from the day.

I was touched my children were more interested in their favorite neighbor’s birthday than the more selfish pursuits of candy for the day.  I didn’t think much of it at the time because we had to get ready for school and the morning got away from us.

The children each had their own different celebrations at school but came home excited for the evening to come.   We had coordinated Shane, Bryna’s daughter and our regular sitter, to take my daughter trick-or-treating.   My son was going to find friends to go with with all the children in the houses just surrounding us.   I wasn’t even worried about asking parents (although we confirmed later that it was okay) because he can manage himself.

My daughter was going to need someone to walk with her at her pace and take her up the walks to the doors and help her get candy in her bucket and Shane said she’d be glad to do so when we asked her a few weeks ago.

When Shane came over before the pre-trick-or-treating neighborhood clubhouse party my daughter was in a tough mood.   Some of the children on the street had come in the door and wanted to tell all about their costumes.   They told her they liked her watermelon costume but for some reason my daughter withdrew and didn’t want to wear her costume, go trick-or-treating or have anything to do with Shane.

But there was one thing she did want to do.   She went upstairs and brought down two pieces of braille paper, folded over into an envelope of sorts.   My daughter told me she’d made a birthday card for Bryna (that morning) and could I interline it for her in print so she could give it to her?

I translated the braille and read the sweetest words from my daughter, phonetically spelled in the way a child does when they’re learning words, and read about Bryna’s birthday, how she hoped she had enough candy for Halloween, that she hoped she had a happy birthday and that I had gotten her some of the shirts with the thumb holes in them like Bryna had told her about and, “wasn’t that grate?”

She had written “Love Reese” in print on the bottom of the page in what was legible to me, but only because I’ve read enough of her print.   After finishing interlining the card I gave it to my daughter who went over with Shane to give the card to Bryna.

Bryna told me later in the evening, when we met on the street handing out our adult drinks to the parents that walked by, that it was the most special thing to her.   She said it made her cry and told my daughter she was crying as my daughter read the braille with her fingers and told her what her card said.  My daughter didn’t think she meant she was really crying so Bryna took her hand and let her feel the tears on her face.

My daughter, who had been so excited about her costume and trick-or-treating, only to withdraw when her friends came around, was now back to herself.   She and Shane did so much trick-or-treating she stopped in at the house to empty her bucket to go back for more.   She told Shane she was having the best time with her.

My son was off on his own although I saw him when he stopped in at our house.   He and I had the same costume—light-up space aliens.   He also came in later with quite the haul of candy.   We didn’t give all of ours away either.   It would appear I picked the wrong time to go a month without sugar.

The Big Boy Update:  Today was Mystery History in my son’s class.   My son is a second year but he was excited to see his third years friends (equivalent to third grade) do their Mystery History presentations.   Each student researches and writes a paper about their historical figure’s life in first person.   They dress up as the person and then present to the class as well as parents.  We aren't told who the person is.  At the end of each presentation the presenter says, “who am I?” and we get to guess.  I was tremendously impressed at the students, some of whom spoke for five minutes with well-written, detailed information about their historical figure.   My son is thinking about who he’ll be for Mystery History next year when he’s a third year.

The Tiny Girl Chronicles:  My daughter came home with a backpack full of activities she did today all centered on halloween and pumpkins.   Some was writing, some was math, some was learning about pumpkins.   She was so enthusiastic about it she wanted to show me everything.   But we had no time.   I had to rush her through a few of them, promising to get to them tomorrow but she had to get her watermelon slice costume on so we could go to the neighborhood Halloween party.

Friends in Pain

There is something to be said for commiseration.   I have pain.   Some days it’s a lot and some days it’s actually okay.   It stems, primarily from my spinal cord injury and the degeneration I have in my spine high up in my neck.   The higher up something is in your spine, the more areas it can potentially affect.   For the most part though my pain is centered around my neck, shoulders, arms and upper torso.   It’s nerve pain that triggers muscular issues that can cause a cascading effect.

I have some other things going on with my body like a lumbar issue and a thumb but with that said, I have lots of places on my body that don’t hurt.  For instance, today my husband and I ran eleven miles.   I can run eleven miles without any leg, hip, knee or foot pain other than what would be normally expected with a long run.   There are lots of things internally in my body that don’t hurt like my stomach, which is rock solid, letting me eat anything and everything I want.

But there is a lot of pain I deal with from day to day.   I have a friend who also suffers from pain, albeit in different areas.   We’ve known each other for thirteen years and know that we can complain to each other, commiserate as it were, on the frustrations of dealing with pain.   My husband is just about the nicest guy I’ve ever met and he’s always willing to listen, but there’s something to be said for talking about it with someone who’s living the same thing.

My friend has a tattoo that says, “It’s Just Pain”.   We each cope in our own ways.   I have no aspirations to get a tattoo, they’re not my thing, but talking about it with someone who understands it sometimes helps.

With all that being said, I have to remind myself that I was originally going to title this blog, “Nothing to Complain About,” not so much because I have nothing to complain about, because to be sure, I can complain with the best of them, but I didn’t want this space to be a place where I ranted on about this or that.

So yes, I deal with pain, but most of us do.   Most of us have our aches and pains and things that we can no longer do due to age.   That’s life.   And I’m happy to be here, with my two children and family.   I have a good life in comparison to many people on this planet.   And for that, I’m grateful.

The Big Boy Update:  My son had a terrible, horrible, no good, very bad day at therapy today.   It was so challenging that Liz and I talked to him about if he wanted to continue with her because if she could no longer help him, we would see if we could find someone who could.   This wasn’t an idle threat, Liz truly wants to help him, but he has to want to be helped.   We talked afterwards and I think the plan of having my husband or me in session with him is intimidating him somewhat.   We’re going to try with just him and Liz next week.

The Tiny Girl Chronicles:  My daughter is good at making up verbal games.   At dinner with Uncle Jonathan and Margaret tonight she was bored so we asked her to start a game.   Her game was to think of a word, tell how many letters were in it and then we’d guess what letters were in the word.   We took turns calling out letters and then we had to figure out what the word was once we’d gotten enough letters.   We did some three-letter words but my daughter was able to marshal the longest words in her mind for the group with words up to seven letters long and was arguably the best word selector in the group.   I was going with three- and four-letter words myself.

What She Knows

My daughter (how many blog posts have I started with those two words?) is in many ways just like other children her age.   She wants to have friends, play games, eat candy, complain about her brother, and laugh at funny stories and jokes.   She wants to be liked, can be very friendly and equally cruel, depending on the situation and her mood.   One thing she wants though, is to know things.

Let me give you an example, her friends come over from next door and my daughter tells them we’re carving our pumpkins.   The friends can see we’re carving pumpkins from the general disarray of pumpkin carving paraphernalia, pumpkin pulp and pumpkin seeds all over the counter.   My daughter can’t see any of that though, so she’s marshaling the knowledge as she sees it in her mind.

She told Madison and Whitaker we were finished carving our pumpkins.   Madison informed my daughter that the pumpkin wasn’t carved.   My daughter said it was.   I jumped in and said the lid had been cut open, the innards had been removed and the pattern was already on the pumpkin.   All that remained was the final carving of the Fortnite character dancing.  

But my daughter was wrong.   She thought she knew something but turned out to be wrong and was corrected simply because someone walked into the room and could see the state of a station.   I wonder if that’s hard for her sometimes.    She seems to handle it well, but it hits her again and again and again that everyone else can do something she can’t—they can see.

My daughter does have some good skills though.   Her brother didn’t want to have anything to do with the insides of the pumpkin because they felt “gross” to him.   She, on the other hand, was all about getting into the mess and pulling out the seeds.   She wanted the seeds so I would roast them with sea salt, a tradition we’ve done every year.

She sifted through two pumpkins full of pulp and got a large collection of seeds.   Her friends weren’t the least bit interested in helping.   I showed her how to skim the seeds off the top by adding water to the bowl.

And then, at the end, I did something I was upset about.  My daughter wanted to go play with her friends.   She had rinsed her hands off and had turned around, about to jump down from the stool she was sorting seeds from when she did this hand shaking thing she does.   Instead of drying her hands, she violently shakes them, flinging water in every direction.   She’s done this in airport bathrooms, in nice clothing, when I’ve been bent over right near her and it’s gotten in my eyes and she does it when a cloth or towel is right near her.   It’s become a habit.

She did it and I said something about asking her not to do that.   Her friend said, “what did she do?”  I silently shook my hands so Madison would know and as I was doing it my daughter said very quietly, “don’t tell them”.  

Sigh.   Of course Madison said, “she already showed us.”   I had shamed my daughter in front of her friends.   What kind of mother does that?   I was disappointed in Madison for saying anything, but she’s seven and I was the one who wasn’t mature in the situation, not her.  I tried to apologize to my daughter but I knew she was already closed off and wouldn’t have discussed it even if I’d pulled her into a room alone to talk to her about it.

I do a lot of apologizing to my children.   I think I’m not getting the parenting thing right a lot of the time.   Fortunately they still love me.   They came up to the attic to find me tonight after they’d brushed their teeth to say they loved me and good night.

The Big Boy Update:  My son came into the bedroom yesterday morning and saw my husband’s foot sticking out of the covers.   He said, “Dad, you need to trim your toenails.   If they were my toes I would eat them.”   We’ve had a discussion with my son about chewing his nails, but at this pint he trims (chews?) them before we have a chance to trim them.   My daughter’s nails are the opposite, always seemingly needing to be trimmed.

The Tiny Girl Chronicles: Uncle Bob was here for a visit a few days ago.   The day he left my daughter came home from school and when she walked in the door she said, “It smells like Bob in here.”  Then she said, “Actually, it smells like pizza.”  My husband asked her, “what does Bob smell like?”   My daughter told him, “pretty much the same as pizza."

International Names

My son and I went to the International Festival at the convention center today.   My daughter’s brainiest from last year who’s now retired and I love all kinds of food, so we’ve now decided to go to food events and festivals as they happen.  

She suggested bringing my son even though my daughter couldn’t make it.   She also suggested bringing a piece of paper and a clipboard so that my son could have his name written in other languages.

It sounded like a good idea, so I got the clipboard and paper and we went to the festival.   My son, Mrs. Aagaard and I got as much in the way of variety as we could from the different cuisine booths, waiting a few hours between lunch number one and lunch number two.   My son is an adventurous eater, which makes me proud.

After the first lunch we went to the cultural booths.   My son was interested in all the countries and asked questions so he could get a stamp in his “passport” booklet.   He filled his whole book up and from the comments we were getting from the various booths, not many children were doing so.

The other thing we were doing was asking if they could write both my son and daughter’s names for them in their language.    Interestingly enough, I think we were the only people doing this because the responses were such that we realized they hadn’t been asked by anyone else.

The people at the booths would many times discuss how to write my children’s names, asking us for pronunciation.   They would explain to my son how it was broken down by sound and also if the reading direction was from right to left instead of left to right like English.

One booth thought the idea was such a good one she asked if she could take a picture of my children’s name sheets.   Mrs. Aagaard may be retired but she’s still a teacher.

The Big Boy Update: At the International Festival we took a break after lunch to watch some of the cultural dances.   When I was my son’s age I would have no patience or interest in watching dancing from other countries, but my son loved it, sitting calmly and watching with rapt attention.   Mrs. Aagaard and I were hungry for the next round of food but my son asked twice if we could stay longer to watch the next performance.   Later, he asked if he could even go back and watch while we did some quick shopping.

The Tiny Girl Chronicles:  My husband and daughter are at a Y Guides event today.   One of the things they did was get in a canoe and paddle around a lake.   There was a high-powered hose spraying water into the lake at one spot and as they were canning underneath it my daughter if it was water from the lake or was it new water?  Her father told her they pumped it from the lake and then sprayed it back in.   My daughter asked why and my husband told her he didn’t know, maybe it was for fun?   My daughter said in dismayed tone, "what a waste of energy."