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."

Attic Amok

Our attic is a mess.   It’s a mess on its way to a much less messy state.   The whole breaking eggs to make omelettes thing.   I am fairly certain my husband had things he’d much rather be doing than organizing the attic.   He has, however, gotten involved in the project with a good bit of vigor and determination.

We’ve gone about looking at the space in a different way, not just thinking about how we can clean up, throw out and compress the existing stuff into the same organizational structure we set in place when we moved into the house.   Instead, we’re looking at how things can be refitted to use the space in different ways.

We’ve both had some good ideas which are causing the whole space to look rather higgledy piggledy for now.   My children have wanted to help (somewhat).   Provided the help was them getting in and out of a large box, being shut in and then pushed across the floor, they were all about helping.

The Big Boy Update:  My son played one of my husband’s favorite board games from his childhood tonight.   It’s a space version of monopoly, but with some extra twists.   I came down from saying goodnight to my daughter to watch them playing and it looked much more interesting than Monopoly.   They had to curtail their game until tomorrow as it was already past ten o’clock.

The Tiny Girl Chronicles:  My daughter helped us put CD’s into a box in the attic tonight.   She didn’t want me to look as she made a more than perfectly packed box of CDs, all aligned in the same direction.   Some things she has a difficult time with, others she excels in.  I told her I remember organizing things with my mother when I was a child.   Mimi had lots of organization jobs for me if I was ever interested.

Sugar

I’ve always liked sugar.   One time, years ago, I stopped eating candy for a month.   A “whole month” at the time.   And that was just candy, not sugar in its additive form to so many things we eat.  I’ve been on and off with diets, all of which have been relatively minor insofar as I’m not significantly overweight.   Mostly my diets have consisted of not overeating.  

Over time I’ve stopped eating artificial sweeteners and now actively avoid them.   I try to eat less processed food, which has been an exercise in reduction as opposed to elimination.   And I try to eat more whole foods like fruits where I can.

But then there’s sugar.   I crave it a lot less now than I used to when I ate more processed foods and foods with significant added sugars, but I still have my days, or weeks, or months even.   With the recent Lyrica experiment where I stopped taking it for two weeks, I lost a good bit of weight due to nausea and lack of appetite.   In order to gain the weight back I had to overeat.   And that’s hard.

Overeating sounds like so much fun—eat a donut (I did), get some chocolate and have it throughout the day (I did) and eat more food (I tried).  Notice how a lot of that involves sugar?   I started drive-by eating candy out of the candy bowl.   I was buying Halloween candy and visiting the candy stash daily.   And I was eating candy corn by the handful.

I saw a YouTube video today and noticed a suggested video about a husband and wife who stopped eating sugar for thirty days.   It was humorous and candid and in the end reducing their processed sugar intake didn’t change their lives, but it did reduce their desire for sugar, something I’ve noticed happens to me when I’m eating less sugar.   They also felt full more of the time from the whole foods they were eating.

It was an eleven minute video that was proverbial kick in the pants I needed to get back to a better diet now that I’ve put the weight back on.   I went to the store and got more fruit.   I was hungry after dinner so I ate two apples—and I’m full, and they were delicious.

The Big Boy Update:  On the way to school my son was quiet for a bit and then told me, “I know a way to sharpen weapons.”   I asked him how,   It was fairly complex, but it started off with, “you take a motorcycle and turn it upside down…”. I told him what he was describing sounded like a sharpening stone and that was good thinking.   He said, “yes, but this is for really big weapons."

The Tiny Girl Chronicles:  My daughter got sent to her room for being rude and impolite.   She was hungry and mad and it was dinner time.   She had been insulting to me and I was playing the role of the hurt parent so I couldn’t interface with her but I was proud of my husband.   He wouldn’t let her out until she was able to be polite (she was fairly vile for a good while.)  She cried and kept sending notifications to us via Alesa, which is like a voice message just speaking out of all the devices in the house.   She was told if she did that one more time she would lose Alexa in her room.   It took a while, but she eventually turned into a kind, nice child and was able to have dinner.   She calmly and sincerely told me she was sorry without being prompted later.   Parenting: some days it takes a lot of work.

Cake Tasting

Today my husband and I went with Uncle Bob to a cake tasting for his upcoming wedding.   You would think this would be a fairly simple thing—deciding which things you like and which things you don’t.   Only it wasn’t so simple.

Everything was good.   There were three cakes and six icings.   Some of the icings could be internal icings between layers.   Most of the icings could go on the exterior of the cake but some couldn’t.   There were fruit-based icings, almond icing, butter creme icing and ganache.   And it was all good.

The cake would have six layers, leaving five icing locations to decide upon between the layers.   Do you go simple with the same thing between each layer or do you have more than one icing option?  And speaking of layers, do you have all the same cake for the six layers or do you do different cakes?  And if so, how do you layer the layers?

But wait, there’s more… There will be two tiers of cake.   Do you make the tiers the same?  Or different?   And…and…and what about a cake topper?   Did you want a cake topper?   What type of decorations do you want in the icing on the cake as well?

I have to tell you, I’m glad it’s not my wedding and my decision to make, I thought.   And then the pastry chef told us, “all these flavors go well together; you’re not going to make a bad choice.”   Not being able to go wrong is a good thing.  

The Big Boy Update:  We went to Pei Wei for dinner with Uncle Bob last night.   We arrived early and the restaurant was nearly empty.   We ordered our food and then waited for what was the longest wait I’ve ever encountered at a Pei Wei.   My son after a while asked, “why is this called fast food?"

The Tiny Girl Chronicles:  My daughter is obsessed with her purple ball.   She has to be touching it at all times it seems.   My husband asked me yesterday if I thought it was possible that the purple ball, large in dimension and rubbery, was a protector for my daughter, keeping her from running into things in our house.   I think he’s right.   She does put it in front of her a lot.

What is Dad Made Of?

My husband and I had an argument today.   We don’t argue that often and this one snuck up on us, not even presenting as an argument at the start.

I've been working on organizing, cleaning out and rearranging all things having to do with the children’s toys, clothes, storage and play areas for the past two weeks.   The goal was to get ready to address the garage first and then the attic to bring down, identify and collect in one place all the things we need to find new homes for.

I had done part of the garage and had already started piling some things off to the side that were targeted for friends or to be sold.  I had been talking (apparently a little too much it turns out) to my husband about when we could get together to start the final stages of the work in the garage and attic.

I had made a family to do list with a category for him, one for me and one for us together.   I had, at the start of this week, asked him to review the list and I had (I thought) made it clear that I needed his help in a few days on the garage/attic project.

I watched as he prioritized his list from one to nine, with one being his paperwork.   I asked if paperwork needed to be the highest priority, given that we had lots of things that needed to be physically cleaned up around the house such as the remaining paint supplies from the recent external painting of our house, the rock wall leaning up against the brick wall that needed to be put on Craig’s List and the plants on the deck that were still in disarray from the painters, including their watering lines.

Yes, the paperwork was top priority, he told me.   Okay, I said, so when will you be done with it?  He told me he would be done by Tuesday—two days on paperwork.   I wrote on the bottom of the page, “Wed—Start Garage & Attic”.

Two days went by and my husband worked late last night, well after I went to bed, getting that paperwork completed so he’s be ready to work on the garage and attic.   I’d been talking about the progress I was making and how close I was getting to him as well as other people who happened by, such as my in-laws.   I was ready for the morning.

This morning I took my son to school and then called my husband while I was in the Starbucks drive through line.   I mentioned something to him about today and the garage and he seemed confused.  I said to my husband, “What did you think was going to happen today?”   He said, “Well, I thought I was going to make my own decision.”

I laughed.   His timing on the line was perfect.   I thought he was sort of joking though.   But I was wrong.   I got home and he hadn’t taken a shower.   So I started working on my braille class.   Time drug on and I was getting a little frustrated because the day was getting away from us.    My husband got up suddenly and told me what his plans were for the day—none of which included the attic or the garage.

He had good plans for the day—things we had on the list to do—but those things could be done when I wasn’t at a stopping point, waiting for his help, because I couldn’t proceed further without him.   I expressed my frustration.   He didn’t like it.   I plaintively told him I had been explaining what I’d been doing—in preparation for this—for days now.   I brought in the paper we used to plan things two days before and pointed to the “Wed—start Garage and Attic” and he told me, “that’s not in my handwriting.”

And then I shut down.   Okay, shutting down isn’t something I really do.   I’m way too verbal to shut down.   My husband told me I talk too much and he didn’t even know what was going on.   Great.   The talking thing again.   Okay, fine, I’ll do my best to talk less, I thought.

And then he went into the garage and started doing things.   I wasn’t sure what, because it was a collaborative job we needed to do together.   We worked it out and we’ll get the job done tomorrow or Friday.   It shouldn’t take too long…I hope.   My husband and I don’t miscommunicate or misunderstand what the other means by such a large margin very often.   I’m glad it was about the garage and not something more important like the health of our children.

The Big Boy Update:  My son has decided to participate in his class’s talent show by singing, “We Are the Planets” by Story Bots.   As I type this, he’s asked me to print out the lyrics so he can read and practice them for Friday’s presentation.

The Tiny Girl Chronicles:   My daughter’s musings in school, including the title of this blog post.

Some Days...

Some days I’m just too tired to write this blog.   I got a lot accomplished today, but I ran out of energy and don’t have enough umph left to enumerate my numerous accomplishments in the realm of cleaning up and organizing my house and my children’s wardrobes.  

Tomorrow my husband joins in the ongoing organizational battle starting with the garage.  I know he must be thrilled at the thought.

The Big Boy Update:  My son is the cat on the right.  Distraction is his super power.  This picture always makes my son laugh.  He calls out, “shiny!” when we're trying to get him focused and he's distracted on something else entirely.



The Tiny Girl Chronicles:  In the picture above, I am pretty sure my daughter fits the personality of the cat on the left.

Training: I ran five miles today.  It was cold, but not so cold as I had to pretend to oversleep.

Paperwork

I used to be abysmal at doing my paperwork.  I hated to file things or deal with things that needed some type or response or had to be handled.  I would pile them into a pile on my desk or in a drawer beside my computer and wait until I couldn’t pile or shove anything more into the space before I’d reluctantly go through the stack.

I got better over time, but mostly it was external forces that assisted in the betterment of my paperwork stack management.   Namely, electronic billing.   Electronic everything.   My non-junk mail was a fraction of what I received in previous years.   What was mailed via paper was typically echoed in some form electronically.   Most things, once removed from the mailbox mostly went into the recycle bin.  

Bills started to pay themselves from my bank account directly.   Physical correspondence from friends and family moved mostly to electronic means of communication.   The vast bulk of “paperwork” I’d had in previous years was ones and zeroes, transmitted electronically via copper and fiber.

But there was still some things that needed to be in physical format.   Things that I would still shove into that drawer on the side of my desk and ignore for as long as possible.   My husband does “paperwork” on a regular basis.   He seems to like to start doing paperwork and take so long in the doing that by the time he’s half-way through he’s had to shove it back in the corner of his desk in a large stack to make time for other things.   Before he gets back to the job again it’s piled back to the original stack height.   Or, at least that’s what it looks like to me.   He would disagree though.

This past week it was time—time to do the paperwork.  It had piled up in the small drawer to the maximum two inches drawer height and I had to handle things.   I didn’t remember the last time I’d gone through the drawer, as I save it for only the most important of things I don’t feel like filing.  

I started at the top and as I got lower and lower down I was surprised to be getting back to the early months of 2017.   I even found pictures of my daughter’s eyes under anesthesia from 2016.   It had apparently been longer than I’d realized.

The drawer is now empty.   It’s a good feeling, knowing I have several years of shoving space available now in my desk drawer for paperwork I want to avoid doing.

The Big Boy Update:  We were asking my son to do something before he was allowed to have his dessert tonight.   I think it was a putting your shoes up and socks in the dirty clothes kind of request.   He was exasperated at us, saying, “I feel like you guys don’t know this word called, ‘multitasking’”.   My husband and I had to turn away so he didn’t see us laughing.   He was very cross at us at the time and we just thought he was adorable.

The Tiny Girl Chronicles:  My daughter has said to me on several occasions recently when I’ve been trying to answer a question, explain something to her or more likely than not, tell her what she has to do or can’t do.   She’s said in a very uncomplimentary tone, “do you ever stop talking?”  I told her I’d try to be better.   I think it’s too many words for her to process sometimes.   She doesn’t get away with being rude, but there is something that’s hard for her to manage with all the words.   My husband said he had to agree with her sometimes when I got frustrated.

Tactile Pumpkin

Today was National Decorate for Halloween day.   Okay, it’s not, but I fibbed and told my husband and children it was so we could get everything out and up for the incoming holiday.   My son was definitely interested in helping—until he got distracted with friends.   My daughter wanted to help though and aside from needing food breaks, she was a good decorating companion.

For my daughter, she has to feel things to understand or, “see” them.   She knows we hang some pumpkin string lights on the banister and she decided she’s untangle the strings as well as make sure the pumpkin-shaped covers hadn’t fallen off.   Since lots of them had fallen off, this kept her busy for some time.

It’s a fine balance with my daughter: keeping her involved and experiencing a thing versus getting it done in one-tenth the time and not having to redo things behind her without letting her know you’re fixing the work she tried very hard to do.

We got the decorations up and then went to the pumpkin patch: a church with a lot of pumpkins for sale.   My children were told they could get one small (fifty cents) and one medium pumpkin each.   My son danced around and picked the one he wanted.    My daughter spent a lot of time picking out the two smallest pumpkins she could find that were, “just perfect”.

Then she wanted to find her medium-sized pumpkin.    She picked one that was tactile.   She thought she even found the braille letter ‘q’ on it.   To some people, her pumpkin might look like it has tumors.   To her, it feels like it’s talking to her.

The Big Boy Update:  My son made a wand today out of a stick in the yard.   In the past, wands have been sticks that he found and were immediately, without any measure of modification, dubbed a “magic wand.”   Today he found an appropriately long stick and worked to remove bark, branches and leaves.   It looked good when he was done, but still not good enough to be invited into the house.

The Tiny Girl Chronicles:  My daughter went to play golf with her father this afternoon.   He showed me a video of her when he got home.   She was able to find the ball some of the time when he directed her verbally towards it.    She was pretty good at hitting the ball too.    She had a good time it sounded like.

The Old House

My daughter knows we lived in another house before we built this one.   She also knows my son came a few weeks early and as a result he lived in our prior house for one week before moving in to this house.  The house is close to where we live now at about two miles away and over the years we’ve driven by it a time or two to show the children where we used to live.

They’ve never been that interested before but for some reason the other day, my daughter wanted to know about that house.    She wanted me to verbally walk her through the layout of the house while we were going somewhere in the car.   I described the house starting from the front entry and gave her some descriptions of what rooms were where and what items were in the rooms.   Some of those items are in our house now, but in other locations.

I tried to relate it to locations she knows, explaining how that house was very similar to how one of our friend’s house is laid out.   Only in our living room, we had a couch and a chair whereas Eleanor’s room has two pianos in it.   That was unexpected to my daughter.   She didn’t realize Eleanor had not one, but two pianos in their formal living room—one being a grand piano.   I didn’t know how to explain a grand piano to my daughter other than it was much bigger and didn’t sit against a wall.   The next time we were over at Eleanor’s house, I told her I’d show her what the shape was.

I thought she was done asking about the old house, but I was wrong.   Later that evening, we were back home and my daughter asked me to come to the front door with her.   She wanted me to physically walk her through how that house and this house were different.  I took her hand and explained things like, “our dining room table is in the room to the left, now, but in the old house there was a room to the right whereas we have a wall here.   That’s where the dining room table was.

The similarities to Eleanor’s house helped (aside from the grand piano delta).   I got my iPad out and brought up pictures of the old house.  My daughter can see, well, we don’t know what she can see.   Sometimes she can see something if she wants to, but it’s not uncommon she’s seeing something more clearly because it’s been described to her and she’s using that information to formulate a picture in her head.   I was showing her the rooms and she mostly could see differences in dark colors.  

As she went through the pictures, gleaning little in the way of actual visual information, I would describe the rooms and pictures.   I stopped her on one and said, “oh, this isn’t a picture of a room, but of something that used to live in the house with us.   Do you know what it might be?”   I thought that was a fair give away, but she didn’t make the connection.   I was doing a little test to see if she could see what was large, taking up the full area of the iPad’s screen, but no, she could’t tell.   I told her it was Lucy, our dog who died two years ago.  

She said, “aww” and then asked me where Lucy lived in the house.   I said she lived all over the house.   She was confused and asked again.   I think she wanted to know where Lucy’s “bedroom” was but didn’t quite know how to ask it.  I told her that just as she had lived in this house since she was a baby, Lucy lived in that house from when she was a baby too.   She remembers Lucy, but it’s a fading memory.   She does remember the tree in the backyard though that Lucy’s ashes are buried under.

The Big Boy Update:  My son is in jeopardy of not having a “freedom” for tomorrow.   He has actually earned a freedom by doing things like talking respectfully, cleaning up after himself, not having to be asked multiple times to get something done, going to sleep calmly, to name a few.   What he’s not following up on is putting the checks on his chart.   One of the items he needs to accomplish to get a “freedom” (usually meaning screen time by choice) is my son has to talk to my husband or me and confirm which of the items he earned a check   He is responsible for managing his checklist.   And he’s forgetting to do so—even with reminders.   He’s just a few hours away from losing screen time for tomorrow.   And he’s been warned.   We shall see.

The Tiny Girl Chronicles:  My daughter is done with the ten days of high-powered antibiotics to knock out the bladder infection under the lining of her bladder.  I’ve had to talk about it several times when she was with me to explain the situation.   I don’t think she liked me talking about it though when she asked me in a stern tone, “is that appropriate to talk about?  You’re talking about down there” (pointing).

Walkie Talkie

I got an Apple Watch on the first day they were released and since that time I’ve worn one ever since.   It doesn’t replace all the things a smart phone can do, but it’s very useful in a lot of other ways.   Recently Apple released the Apple Watch version four and it had been a while so my husband and I decided to upgrade.

As is typical with hardware and software, sometimes the things you’re most excited about turn out to not be that useful where as something you thought was silly later become integrated into your daily life.   Like text messaging.

Back, way back, in 1990 I was texting at IBM over the mainframe on a green screen.   It was a novelty, but still a good way to ask someone if they wanted to meet you downstairs at the cafeteria for lunch.   Did I envision texting would be such mainstream method of communication as it is today?   No.

FaceTime.  Television, movies and books have talked about video calling for decades.   And now it’s easy and integrated with a phone that fits in your pocket.   No special video calling phone necessary.   But it’s turned out to be primarily a special occasion calling method for the most part.  And programming your VCR to record shows at a future point in time.   Don’t forget that one.

Suffice it to say, it’s hard to tell what will catch on and become mainstream.   Back to the new Apple Watches and a new feature called, “Walkie Talkie”.   It’s just what you’d think it is: you hold down a button and talk.   When you release the button your message is transmitted.  The recipient can respond and you can chat back and forth.   Fun. Well, maybe fun.

There is no, “answering of the call” as in a phone call.   The message just comes through on your watch.   You won’t have random people blaring out on your wrist though as you have to grant permission to each other to have the feature work between you.   But what happens if you’re in a movie theater and your husband doesn’t know and he wants to ask you if you could get cheese on the way home from the store?

There are some beeps that happen just before the message and if you don’t want to hear it, you can put your hand over the watch and it disregards the message.   So it’s fairly constrained, considering my husband has granted me permission and I talk a lot.

We didn’t realize how useful it would be though.   Finding my husband when he’s down the street or even in the attic is easy with a, “hey, where are you?”   And he’s messaged me back and forth while at the grocery store asking if we needed one or two gallons of milk and what if they were out of the soup I had on the list, did I want a different kind?

I don’t know if it will become mainstream like texting, but it’s definitely useful.   My children think it’s great fun too.   They wanted to put on our watches and talk back and forth to each other.

The Big Boy Update:  Today was bring your parents to school for my son.   He showed us a lot of math work.   Some of which he was inventing, called, “CC Math”.   I thought it was sort of interesting he was coming up with his own ways of extending multiplication and division but his teacher said they have students do the same thing all the time.   She said she would teach him some additional ways to do problems so he could do that as well as his new math.   He’s able to understand numbers in an abstract sense now.   Today he did a math problem where he divided 5,487,328 by four.

The Tiny Girl Chronicles:  My daughter came downstairs from helping me with some work by sorting something into sizes and shapes.   She loves to sort.   When she got downstairs she called to me and as I looked over the bridge I could see what her problem was: her brother was in the chair she usually sits in to listen to shows on her iPad.   I asked her what she needed and she said, “my heart doesn’t feel like being anywhere other than the chair, but that’s where Greyson is.”

Gate 8

There was a gap in time today before where I had my daughter alone.   It happened to be a time when I was hungry and I knew my daughter hadn’t had lunch.   I came into the living room and said to her, “do you want to go to the fair?”   She said yes, got up and put socks and shoes on and was waiting for me at the garage door in five minutes—before I was even ready. 

I told her it wasn’t going to be for long, which was okay with her.   We parked, went through the tunnel towards the entrance when my daughter said, “are we going to Gate 8?”   I looked and saw, “GATE 8” in large letters right above the area we were heading.  

I’ve been going to that gate almost all my life and I had no idea it was Gate 8.   Why did my daughter know?   Because she couldn’t see it.   Because the rest of us rely on what things look like and where they are in position to other things we know.  My daughter relies on memories, sounds and how things feel.

It’s interesting going places with a child who has a blind cane.   You get things for free or extra or upgrades—even if you don’t want them.   We got more corn on the cob than she and I could easily hold and eat at the same time because they wanted to give her extra.   (She didn’t finish the one corn, much less two.  Fortunately, I was hungry.)

My daughter didn’t want to ride rides, but she did want to play games.   She wanted to win her father a Fortnite Llama.   There was a problem with this: they were all out.   There had been lots and lots of llamas at the fair on Sunday when we went, but the popularity of Fortnite had wiped out the llama collection. 

My daughter did “win” a game and got a stuffed animal.   She really wanted the next size up, which I didn’t think she needed, but the lady working the stall said she could have it.   

My daughter and I rode the sky chair lift back to Gate 8 and got home in time for my conference call. 

The Big Boy Update:  My husband and I had a meeting with my son and his teacher today.  It was tough on him, mostly because he didn’t want to fail or do poorly.  He had to stay in for two days during playground time to do work because he hadn’t gotten anything done during main work cycle.   (Not something that will happen normally, it was only to let him see the importance of work during work time.)  My son had in his pocket something he’d been fiddling with.   It turned out it was a pencil he snapped in half when he was angry about having to stay in and work.   He later in the car told us he had more strength when he was angry.   He would never have been able to break the pencil when he was happy. 

The Tiny Girl Chronicles:  My daughter asked the date today and then figured how many days it would be until Halloween.   Then she told me, “and that means Halloween is on a Wednesday.”   She’s doing all sorts of calculations in her head.   She thinks a lot.   

Shower Curtain Free Bed

Ha.  So I just reread last night’s blog post and it was a mess.   I don’t typically proofread them although sometimes I do.   Two nights ago I wasn’t able to sleep much which meant that last night I was very tired.   So tired that I fell asleep three times sitting on my bed as I wrote the blog post.   The fact that I could follow it at all was more than I had hoped.

Today I made some changes to my children’s beds.   My son and I had a conversation about how much in the way of plush animals and things he had in his bed.   It was his idea to remove everything and just got with his Incredibles 2 sheets, pillow cases, comforter and Jack Jack, the plush.    Tonight when he got in the bed he agreed, there was lots more space.

My daughter’s bed got an upgrade she hadn’t asked for but I thought it was time to do.    Back when she was having these recurrent bladder infections, she was wetting the bed regularly.   At one point at the beginning we didn’t even realize it was a bladder infection because it wasn’t presenting as such and we were having nightly incidents.  

Getting up in the middle of the night to change sheets is no fun for anyone, so we had three sheets on her bed like this from the mattress up:  waterproof mattress cover, mattress pad, plastic shower curtain, sheet, plastic shower curtain, sheet.

This meant that in the middle of the night, no matter how much my daughter had wet the bed, we could pull off the sheet and plastic shower curtain and underneath would be a clean, dry sheet.  But sleeping on two plastic shower curtains isn’t that much fun.  

Although I’m not sure my daughter really cared.   But today she’s having the last of her super powerful antibiotic to beat out the last of the possible infection behind her bladder wall.   And she doesn’t wet the bed otherwise.   She gets up in the middle of the night and goes if she needs to or waits until morning.  

Tonight I had her get in bed and feel how soft the sheet on top of the mattress pad felt.   I think she liked it because she told her brother and me it would be nice if we’d stop talking because she was trying to go to sleep.

The Big Boy Update:  My son came downstairs not long after bedtime last night.  I told him it had’t been long enough for him to get to sleep and have a nightmare.   Actually, he told me, he’d had a “thinkmare”.   He explained, “the thinking is keeping you awake and this one is scary.”   So he told me about his thinkmare and then went back up to bed and could go to sleep.

The Tiny Girl Chronicles:  My daughter went to the fair with Shane, our sitter, today.   I gave them some money and I know they had to pay entry fee plus I saw pictures of multiple rides my daughter went on.    When they got home somehow she had won four, yes four, medium-sized stuffed animals playing games she likely couldn’t see.   I asked Shane how much I owed her and they hadn’t spent that much money.   I need to ask Shane tomorrow, but I’m wondering if my daughter in her cute blindness got some prizes she might otherwise not have gotten.

Spaghetti Splatter

Have you ever had a memory rush forward, cad up from the dregs of your brain because of some association you did’t even know you had?   I think it happens to me fairly often.   I like remembering things based on a smell or phrase or location.  

Tonight I was on the was home from dinner with Uncle Jonathan, Margaret, my husband and children after Mini Milers running with my children.   It was recently dark out, with drivers not mentally fully adjusted to the nighttime vision needed to do their best driving.  

Something happened ahead.   I didn’t see what it was, but two cars almost collided as they both tried to be the one going forward first.   Once the leader was established, the second car rode very closely up on the first until an opening appeared and the trailing car could whiz by, making their annoyance known.

The details of what happened to me when I was in college aren’t all there, but I remember some key parts.  First, we were driving on Alabama highways well into night.   Second, the person’s car we were riding in was brand new—possibly a few hundred miles at most.   And thirdly, the person driving wanted to be “cool”.  

I watched and we were tailed.   I looked around nervously as our car got in front of this, “jerk” and slowed down apparently trying to teach him a lesson or some such.  I probably chewed my nails as our car changed lanes multiple times, preventing the car behind us from passing us.  

Eventually the car got past but instead of driving quickly off, the car got in front of us and slowed down quickly.   Our friend with the new car hit his brakes as the car in front threw out a container of leftover spaghetti and meatballs directly at the windshield.

The other car won, hands down.   That spaghetti went everywhere and into the vents.   There weren’t any car washes late at night and by morning, the smell coming in the vents when the air conditioning was turned on was hard to stomach.   Tonight as I drove home I looked at the bag of left overs beside me and am glad I’ve never had an occasion or need to throw my leftovers out the window at another car.

The Big Boy Update:  My son watched the doTerra video made by children for the Children’s Kit essential oils.   He was really interested in them.   His therapist was too.   The asked me to order a kit for her to use with her other students.

The Tiny Girl Chronicles:  My daughter was very excited Shane was coming over the other day to watch her.   She was bouncing on her purple ball at the front door saying, “I can’t eat, I can’t sleep, all I can think about is Shane.  This is gonna be awesome!"

I’m Probably Gonna Pay For This

This is the fault of the eclipse.   I got a YouTube notification that my friend,whom we went to see the solar eclipse with, had uploaded a fifteen minute video on our eclipse experience.   The eclipse was a while back and he’d already uploaded the video, but wondering what had changed—like the twelve extra seconds in the Star Wars movie we had to go to theaters to see years later—I figured I’d better watch the video again.

I’m not sure what changed in the video, but I watched my children, husband and friends in frame as well as me.   And I noticed something: my calves looked like they were in shape—like they had been running.   Damn, I haven’t been running.   In the last six months I’ve run hardly at all.

I’ve been trying to get motivated to run but I keep finding reasons to not run.   The half marathon is in a month and I don’t know if I can even run five miles, let alone thirteen point one.  But that video worked.   It was the motivation and the reason I needed to run.  

Today my sitter was getting my daughter.   I decided to have her get my son and I wasn’t taking my son to tricking.   I was going to run.   I was going to not only run, I was going to run by myself—which is no fun.  I like to run and talk.   Passes the time.  

I headed out and got on the phone for a bit, which helped, but I was going to be out for longer still and there are pockets of no cell service in the depths of the park which I didn’t know about as I always run with someone.   After getting off the phone I called my husband and told him the park was almost deserted and I was out alone and could he please check my location every ten minutes or so to make sure I was still moving?  He said he would.

I wasn’t sure what I was going to run, but I went out five miles so I was committed to ten miles total once I turned around.   I was sore more so than tired.   From a cardio standpoint I don’t think I’ve lost much from the six month break.  But my muscles weren’t what they had been.   And they were sore.  I got back at close to eleven miles, which is only two-ish miles from the half marathon and so why not, finish it off.

I’m sore, but I’m not particularly tired.   Tomorrow we’ll see how much I’m going to pay for the long run.

The Big Boy Update:  When we went to the fair my children did the thing they do over who gets which seat.   I sat in the third row with Nana.   My son told me I was in The Lonely Chair.  I’m not sure why, Nana and I talked the whole time and I didn’t feel lonely once.

The Tiny Girl Chronicles: Nana and I were in the third row of the car going to the fair when my daughter got a little exasperated because she wanted to talk or ask a question or say something.   She said, “do you all ever listen to anyone else or do you just talk?”   Nana and I laughed, admitting we were expert talkers and probably should learn to listen more.

Poor Exercise Decision?  I ran a mostly untrained half marathon today.   Among our friends this is called the Richard Martin Training Method, who excels in doing extreme fitness things with little to no training.

I Told Me So

I have this prediction every year.   It’s sort of a non-global warming thing.   Wait, let me back up and start from the beginning…

I’ve lived in the same city all my life, save for some semesters at another school and extended work assignments.   Each year about mid-October the state fair comes to the fairgrounds about fifteen minutes from where we live.   Actually, where I’ve lived for all my life.   Wow, I guess I really haven’t moved around much.

Side track here to a zip code story.   I was born, raised, went to elementary school, junior high school and college all in on one zip code.   When I moved out to my first townhome it was also in the same zip code.   I bought a house later that was one zip code over.   I’m now in my third house in that second, neighboring zip code.   Forty-eight years, two zip codes is basically what I’m saying.  

And all those years I’ve been about fifteen minutes from the fairgrounds on which the state fair is held for nine days each year come mid-October.   So how does this relate to global warming?   It’s a timing thing.

Our summers are hot and humid.   It seems like every year summer goes on for longer and longer.   Since the global warming/climate change was initially a news topic, it’s been something we discuss every summer.   Yes, yes, climate change doesn’t happen that quickly, but hold oh, it’s still summery weather and temperatures later this year than it’s been before, right?   Is that rebound ice age just around the corner?   Is this the first sign?

Every year we think the same thing: summer is staying for longer and at hotter temperatures.   And then I figured out something, something key: every year during the fair, it suddenly becomes jacket weather.

This seems specific that I’d remember this exact change, but there’s a reason.   I’m cold-natured.   If it’s even remotely cold-ish I’m going to wear a jacket.   If it’s cold and then it gets hot, I’ll still wear a jacket but take it off and tie it around my waist when it becomes warmer later in the day.   Also, I hate having more clothing on me than necessary and I don’t like a jacket tied around my waist.

So with the fair when I was younger, we’d be talking about the weather and how it looked like this year was going to be warm weather and we wouldn’t have to deal with the whole jacket nonsense.   Then the week of the fair would roll around and it would be jacket weather, or at least partially so, for at least some of the long hours we’d planned on being at the fair I was going to need a jacket.   Drat.

This year was looking much the same as before, although after this many years I’m boldly telling people of my "fair jacket temperature” prediction.   But it was very hot this year.   Almost into the nineties.   The fair was set to open on Thursday but we had hurricane Michael come barreling through during part of the day.   They made a decision to close the fair for the rainy and yet non-jacket temperature on Thursday.

The fair opened on Friday…to much colder weather.   To jacket weather.   Today, we were going to the fair with my in-laws.   I rolled over this morning to look at the forecast and thought, “I told me so” as I saw a current temperature of fifty-one degrees with a high of sixty-three degrees by the time we got home.   So maybe global warming isn’t here just yet.

The Big Boy Update: My son went on an upside down roller coaster today.   He didn’t want to do rides for a while and then I got a picture from my husband saying my son had agreed to go on “this one” with him.   The next thing I got was a video of my son talking about how it wasn’t that bad.   Apparently the ride (it was a big loop) stopped upside down right in the middle at one point.   I think my son was pretty excited about going on the ride (and being cool about it afterwards.)

The Tiny Girl Chronicles:  My daughter got a little self-centered today while we were at the fair.   Suddenly it was all about her.   I was walking her through a building of vendors.   She said she was thirsty but that she wanted specifically a lime fizz from one particular booth (which is indeed the best lime fizz at the fair).   I told her we couldn’t go there because we were waiting for her brother and father to meet us beside this building.   I don’t remember what happened next but it was another round or two of selfish, I want it now-type of comments.   I squatted down and squeezed her hand, talking very firmly and clearly, saying this day was not just about her, that she had already been on rides, had fudge and done other things she wanted to do.   If she wasn’t going to change her attitude she and I could go to the car right now and wait for everyone else to finish their day at the fair.   I stood up and started walking, pulling her along behind me.   I don’t think she realized I heard her as she said, “we’ll see about that."

Diwali

We went to a Diwali celebration today.   It turns out it’s not Diwali yet, but that didn’t dampen our enjoyment of the day.   None of the people in our family had ever gotten a henna tattoo before.  My daughter and I got something done on one of our hands but my son wasn’t sure about doing anything until an older Indian man talked to my son about a dragon on the inside of his forearm.   That convinced my son.

We had met Aditi, a student in my daughter’s class, earlier and were spending time with her while her mother performed on stage.   We walked around and held our arms still, waiting for the henna to dry.   My daughter and her friend wanted to get their faces painted.   My daughter patiently waited as we talked to them about what the money was being raised for: an all-abilities playground.  When they realized my daughter and her friend were visually impaired, they were interested in talking to us about vision loss and how they liked school.

After my daughter got her face painted as a “blue dragon” we met Aditi’s mother and all got in line for various Indian foods.  We were also with my daughter’s braillest from last year, who is a fan of all kinds of food.   Mrs Aagaard suggested we meet together as she hadn’t seen Aditi since the end of kindergarten when she retired.   After lunch we made plans to get together soon, possibly at Aditi’s house.

My son was excited because the next place we were going (after picking up my car from getting new tires) was his school’s capital campaign celebration.   It was the culmination of over four years of fundraising, school building and more fundraising.   He wanted to show his teacher, who is Indian, his dragon henna tattoo.

I had a good time, seeing old trustees and parents I hadn’t seen in several years.   My daughter had a chance to play with some of the friends she used to be in the same class with when she went to the school two years ago.

A fun day, but we all got cold and headed home where Nana and Papa had just arrived.   Tomorrow we’re going to the state fair.   We love the state fair.

The Big Boy Update:  My son said tonight when we got home that he was happy because a lot of people know him at his school.   He is coming into a more positive experience socially at school.   He’s having a much easier time relating with and making friends.   It’s boosting his self-confidence a lot too.

The Tiny Girl Chronicles:  My daughter got a henna tattoo and had her face painted today—and she can’t see any of it.   But she wants the experiences.   She knows people will see her tattoo and look at what’s on her face and talk to her about it.   It’s fun for her, even if she can’t experience it visually.

9:40

I have that as a blog post title in my list of blog post titles.   It’s a list I keep on my phone to remind me of things I want to write about here.   Only every so often I have a title like, “Blurp and the Groundhogs” and I have not the faintest idea what it meant.   The thing is, I know I’m forgetful—it’s why I write things down in the first place.   To be safe, sometimes I’ll write something like, “why all cereal should have marshmallows” and then, because I might be confused with a title like that, add, “conversation at breakfast”.

But ‘9:40’ with no accompanying text and I’m lost.   But not to worry, I’ll just tell you about my day. It was the first day of…wait for it…THE STATE FAIR.  You heard correctly, it’s State Fair time.   Yesterday was suppose to be the first day of the fair but Michael, the fast moving hurricane, stopped in for a few hours and for precautionary measures they shut down the fair.

My son was in school but on a two-hour delay and my daughter was still tracked out.   My parents came to town to make sure there was no damage to their property and to follow-up with a tenant who was out of power from the storm.   And we had Mexican food for dinner.

I’m sitting on my bed now, editing college application essays my sitter has been working on.   I’m so happy.   I love editing things.   My mother does too.   You should see the two of us when we get into an editing cycle, editing something of my fathers.  

The Big Boy Update:  My son wants to put up Halloween decorations so badly he’s gotten into pestering mode.   This morning because he was on a delay due to weather I told him he could get two things down from the attic.   My daughter got involved and the next thing I know my husband was upstairs too.   My son was very happy as he put a few things out on the front porch and into the front yard.

The Tiny Girl Chronicles:  My daughter and husband went to Frankie’s Fun Park today.   They found a game that was broken-ish in that every time they played it they got 500 tickets.   It was too good to be true, they couldn’t stop playing, both excited for their own reasons about winning.

Rain

We’re having another hurricane hit us.  Well, sort of.   The prediction for Florence put us right in the main path.   Only she swerved and we got some rain.   There was wind, but not that much.   I mean wind, yeah, but not WIND wind.  We had two hours of “squall” weather, which was pretty fun if you like weather, which I do.

Today Michael is here.  Michael’s path was predicated to come right over us—and he did.  Right over us.   At a fast clip.   Michael has been in a hurry to get north, possibly to visit some relatives.   By the time he got to us he’d expended much of his energy.  

I am typically ignorant on the latest news topics.   Yesterday my mother called to ask me about the hurricane and if school was cancelled.   I honestly didn’t know a hurricane was coming.   And if it was coming, goodness, it must be five to seven days off if Florence was any measure of hurricane travel speeds.  

When my mother told me Michael would be to us by tomorrow I pulled out my phone and opened a weather app—and then the phone rang.   I told my mother I’d better take the unknown call and I’d get right back to her.  

I called her back two minutes later to say schools had been cancelled today in anticipation of Michael.   My son’s school let out half a day early.   What happened?  Some rain and wind for two hours maybe.   And some rain.   But nothing more than a nice storm.    Some cities had significant damage from Michael but we missed all the action, thankfully, again.

There was, however, the potential for tornados.   We stayed safe inside and the children and I organized (and threw out) stuff from the junk bins.   We have a lot of junk.

The Big Boy Update:  My son likes working at his desk in the bonus room now.   Mostly before bed.   What he likes to do more than anything is create covers for booklets he’s going to make at a later time.   He has about twenty covers so far.

The Tiny Girl Chronicles:  My daughter was trying very hard to find something on her iPad game one afternoon while we were in Detroit.   I was working on my iPad and told her I could help her in a bit, but not. yet.   I knew she was getting frustrated, but if we always help her immediately, she won’t try to work it out for herself.   She has some sight, she needs to learn to use what she has.   But in this case, I came over to help her after I heard her say to herself, “Annnnnnnd…Reese cannot find it."

I’ll Pass For Tomorrow

On Sunday when my daughter and I got to our room at our usual, favorite hotel in Troy, Michigan, I was surprised to see some changes.

We’ve been going to the same hotel, requesting the same rooms by the pool for so long now that they see us coming and go ahead and put us down for room 126 or 116 or one of the other rooms surrounding he pool.   So when I walked in and saw the television on—a new, larger television with lots more options, I looked around to see what other changes had been implemented.

And I found this:

On the back it said to hang it on the door handle before 2:30AM for the following day.

My daughter and I don’t make much of a mess so I hung the placard out on the door.   And then I got to thinking about it.   Why 2:30AM?  It must be so they could let the staff know if they would be needed for the following day.   And then I wondered if by asking for my room not to be cleaned, was someone missing out on much needed income to feed their family?   Well, you know me, I had to ask.

Later on, while my daughter was eating a snack up front, I asked the manager at the front desk.   I said I liked the new program and was the 2:30AM cutoff for staffing purposes?   She confirmed that it was.  I asked if that had been hard on their staff.   She said that it had been a big help to the hotel, that there is a shortage of staff across all the hotels in the area.   The new option was benefiting everyone.

Then I asked if many people took advantage of the new option?  I commented at home I didn’t change my sheets, toilet, bathroom, etc. every day.  She said it had been tremendously popular right away, with everyone benefiting from it.   But then she told me this interesting statistic: women more likely choose to skip housekeeping, while most men continue to opt for the traditional daily room cleaning.

The Big Boy Update:  My son has been having what I’m going to call, “fast nightmares” recently.   He’s not gotten quite to sleep about ten to fifteen minutes after we’ve turned out the light and shut the door.   We thought it was a ruse to get out of the room and hang out in adult-land but it seems genuine.   He usually wakes up his sister when this happens, who follows him out of the room, asking what happened in the nightmare.

The Tiny Girl Chronicles:   My daughter was doing a “best of” in our family the other day.   She said she was the best at hearing and memory (she’s definitely got the hearing one and probably takes the memory award as well).   She said I was the best at hurting my finger (from the fall last week) although she amended it and said I was the best at running.   Her brother was the best at video games.   Dad?  She said he was the best at snoring.

Trained to Disobey

After my daughter’s EUA on Monday we went to the mall to have lunch.   She initially wanted Chick-Fil-A but at some point changed preferences to Sbarro’s spaghetti with extra sauce.   She was excited about eating since she had to miss breakfast due to the procedure and told me, “they have the best pasta”.  I was alarmed, concerned, shocked even, that she would place another pasta dish over her father’s so I clarified, “you mean the best other than dad’s, right?”   She must have been pretty hungry because she said that no, it was the best…ever.   "We’re not going to tell dad you said that," I told her.

After eating we went to our next stop on the regularly scheduled list of places she wants to go in the mall—the candy store.   I tell her how many pieces she can put into the bag and then we go down the rows, me calling out what each compartment is and her deciding if she wants one or more of them while she tries to convince me she should really get more than the number of pieces I’ve allotted her.

We then head to the ground floor to sit at a table by the fountain, eat some candy and then throw some pennies in.   We have been bringing the pennies Joan sent her every trip.   She throws some in each time, making wishes like to have her own chocolate factory (she really wants her own chocolate factory, making this wish frequently).   Of note though, as much as she talks about chocolate, she didn’t want a single piece of chocolate at the candy store, it was all gummy-type items.   I even asked, what with all the chocolate talk, but no, she didn’t want any chocolate, thank you very much.

Our next stop was the bathroom.   As we rode up the elevator a man got on with a juvenile dog wearing a harness indicating he was a “Leader Dog” in training as a guide dog for the blind.   We got off the elevator and I asked the man if my daughter could meet his dog in training.

While my daughter shyly petted Marlo, we talked about what it took to train a dog to be a guided sight dog.  It’s a year-long process costing about forty-thousand dollars.   The dogs are given free to those in need.   There are multiple organizations that train sighted guide dogs, this one being Leader Dogs.   A child isn’t eligible for a dog until they’re sixteen as there is a lot the blind person needs to know and be able to do before they can utilize a dog safely and successfully.

The training is intense for the dog (as well as being rewarding and fun).   For example, the dog must be taught how to obey always.   And then, once that’s entrenched, the dog has to be taught how to disobey.   If the owner asks the dog to do something and it’s not safe (cross the road, move towards a sharp drop) the dog has to refuse to obey—to keep the owner safe.

My daughter enjoyed meeting Marlo and we talked about her possibly getting a dog herself one day.   This is a choice she would make, not my husband or me or anyone else.   It’s a big responsibility and a commitment for the life of the dog.  She has time to think about it.

The Big Boy Update:  My son came in tonight after my daughter and I had arrived home from the trip.   He found me unpacking in the bathroom and launched in on a story about something that happened during the day.   I’m very glad the children don’t miss us to the point of being sad while we’re away.   I said, “hey, can I get a hello hug?”  He ran over and hugged me and gave me a back massage and a big smile and then continued with his story.

The Tiny Girl Chronicles:  My daughter’s decided she wants to work in a pet show when she grows up.  She’s mentioned this more than once.   We talked about what pets would be for sale in her pet shop.   Not antelopes.

Atrophy

I wish I could report good news today but there isn’t any.   My daughter was under anesthesia for about fifteen minutes, which is all Dr. Trese needs to see what’s going on in her eyes.  Her right eye, for now, is presumed completely sightless.  Dr. Trese is considering opening the internal scar tissue up at some point, possibly in the near future if there are signs the eye has any function at all, but for  ow we're leaving it as is and focusing on the left.

There have been pressure issues over time of both high and low and my daughter has a host of drops to help manage that as best as possible,   The right was presumably low based on a touch test my husband did two weeks ago so she stopped with two types of drops in the right.  It’s holding at seventeen now, which is good.  The left was at twenty-nine, which is better.

I talked to Dr. Trese about getting a handheld pressure reader for home so we could monitor her.  In the past, both he and Dr. Grace haven’t been keen on the idea but he thinks now, with a telemedicine initiative happening at Duke it might be something to pursue with Dr. Grace and her associate who is leading the group at Duke.  We'll see Dr. Grace next week and discuss further.

The left eye's retina is reattached, although there is a little bubble of retina tissue he thinks is due to the detachments and edema. The bad news is the area of atrophy in the central portion of her left retina.  We know her vision has been degrading and this is the cause.   She can likely see splotches of area but some regions are non-functional.

The bad news is typically this type of condition doesn’t recover and only worsens with time.   My daughter would potentially be a good candidate for cell transplant, but this is in trial and not for children nor people with conditions like hers, so it might be years off.

Dr. Trese is working on a trial for a medicine that will potentially make the environment in her eyes better and her cells might regenerate on their own, only the research isn't funded yet.  I told him to send me an email and I’d contribute, and then he told me he needed seven million dollars.  We laughed as I told him that was a little more than I was up for donating.   He said he was meeting with a group on Halloween that did have seven million dollars and he was hopeful they would fund the project.  But again, that's two or more years out, pending funding and FDA approval.

He mentioned he gave a presentation in Washington last week where Wiley Chambers, the FDA's head of ophthalmic drugs, was in attendance.  He was watching for positive signs from Wiley and things looked good so far, so he has hope for his trial and drug in the near future.  In the meantime, he told me there was a matching grant, so if I happened upon three-and-a-half million, that would do just as well.

I asked if her poor vasculation was an issue for her eyes, preventing them from thriving,   He said that was less of a concern.  He thinks her vision is not only splotchy, but variable because fluid under the retina moves around, making her vision inconsistent.   Her peripheral retina is still good though, so she should still have some peripheral vision at least for now.

So there’s an expensive trial my daughter might be a candidate for, and cell transplant research that may be available in a few years, but for now we're doing what we can to keep the vision she has remaining.

The Big Boy Update:  My son is with Nana today as it’s a holiday from school. We didn’t tell my daughter because it would have made her sad to miss a day with Nana.

The Tiny Girl Chronicles:  At lunch after my daughter's EUA today she told me, “I like every single color except pink.  The only kind of pink I like is rose.”  Then she added, “I like British colors too.”

EUA Round #?

My daughter and I travelled to Detroit today so tomorrow she can have EUA number I don’t even know anymore there have been so many.  Her eyesight has only degraded since the original infection that triggered a catastrophic series of events in her eyes in August of 2015.  Well, with one exception—her vision did improve after the hematoma that blocked her full sight a while back.  Other than that, things don’t get better with her eyes, they only get worse and all we're doing with her doctor’s is to keep what vision we can for her.

That sounds depressing, and it is, but it’s the reality of what we're faced with and it’s better to be realistic in this case so we don’t give my daughter the wrong message about her vision.  We need to be honest with her, and short of being pessimistic with our comments (which we're not) we are matter of fact about things.  She is handling the loss of vision possibly the best in our family.  It’s been over three years now and while she knows she used to be able to see, she doesn’t really remember it.

I don’t know what's more detrimental to her eyes as she has multiple abnormalities, but the bad vasculatoin makes it hard for her eyes to thrive.  Cells need to be oxeygenated to function and her eyes are constantly challenged in that respect.

Her right eye doesn’t see even light now we think and has a bad low pressure issue happening.  It’s hard to have hope for the right eye (I still do) but we focus all our energy in keeping the dwindling vision in her left eye there.

Tomorrow we'll see Dr. Trese and he'll look at her eyes under anesthesia.  We'll find out the latest and make our next plans.   Tonight, my daughter is happy because she had tomato soup for dinner and got a new app on her iPad.   She's in her favorite hotel and is looking forward to swimming in the pool tomorrow.   She's a petty happy child.

The Big Boy Update:  My son and husband went to P.F. Chang's for dinner.  My husband sent a picture of my son holding up the children's menu, proudly smiling because he had found all the words in the word search.

The Tiny Girl Chronicles:  My daughter told me tonight her least favorite number is twelve,   I’ve never had a least favorite number before so I asked her why she disliked twelve so?  Too many math problems have the answer of twelve, she said.

An Old New Desk

A while back we set up a desk in the bonus room for my daughter.   I put lots of things on it for her to do braille, coloring, cutting, stapling, taping as well as her homework.   I stocked it with supplies and put her braille machine on a small table beside the desk.   She loved it.   

And so did my son.  He kept trying to use her desk, which made my daughter mad.   My son already had a desk, my husband’s desk from his childhood, in the room right off my children’s bedroom.   Only my son never wanted to use it.   I found out why when my daughter’s desk was set up: his desk was in a dark room with poor lighting and no windows.   He didn’t say so exactly, but I gathered it wasn’t a conducive environment to do things.  

I thought about it and realized we could bring his desk into the bonus room, add a lamp and a real office chair and my son would have the same environment my daughter had with windows and space.   Moving the desk was on my list of things to do for a while, but since the desk was solid oak and wouldn’t fit through the doorway without removing the door and tipping the desk on end, I put it off. 

Yesterday my husband and I spent a while moving the desk, putting the hutch from his 1980’s era desk on top and then stocking it with paper, pencils, a pencil sharpener, tape, etc. to make it a nice workspace for my son.  

When I brought my son home from school I took him upstairs to see his desk and he was thrilled.   He sat down and looked at everything there and talked about the things he wanted to do at his “new” desk.  

We haven’t told my son yet about the secret hiding spots behind the speaker covers that are velcroed on yet.  He’s too excited about all the other things he’s going to do with his new (old) desk.

The Big Boy Update:  My husband and daughter were at Y Guides the other night and just before dark my son asked me if I could play baseball with him.   I told him sure, but I didn’t know how to play baseball.   That was alright, he said, he’d teach me.  In the front yard he showed me how to put on the baseball mitt and then we spent a good while throwing the baseball back and forth.   He explained I was suppose to throw the ball right at him.   He wasn’t aware of my inability to throw accurately.   But he told me I got better the more I practiced.   We played into dusk, when we couldn’t see the ball well enough to catch it anymore. 

The Tiny Girl Chronicles:  My daughter was on her iPad this evening when my husband returned from showing houses and running errands.   He had started cooking, something I don’t think my daughter realized until she caught the smell from the kitchen.   She suddenly said, “wait, are we having pasta for dinner?”   She knows the smell of her favorite food well.  

UTI(s)

My daughter has had five recurrences of a urinary tract infection since March.   More than two in a six month period and typically doctors want to look into the situation in more detail to see if anything else is happening.   We had plans to see a pediatric urologist but messages got crossed, a referral didn’t get followed-up on and I lost track of time.   And then we thought things had cleared, so we didn’t pursue it.   But then my daughter got another UTI and it was time to get her checked.

Yesterday we went to see that pediatric urologist we had plans to see two months ago that got put off. My daughter had finished a ten-day course of antibiotics and was cleared again as infection-free while we were there.   We answered a host of questions on a questionnaire, something that was a challenge to do with a six-year-old who doesn’t want to discuss anything medical happening to her.   She was more forthcoming with the doctor who had twin two-year-olds and had just the right words to use with my daughter.

They did an ultrasound on her bladder, with me telling her this was what they did to me to see her when I was pregnant and she was inside me.   The ultrasound was fairly simple, testing only to see if there was any urine left in her bladder after she had gone to the bathroom (there wasn’t).   She has no issues at all with solids, which eliminated other concerns.

The doctor asked if she’d ever had pain in her lower back or fevers, which she hadn’t at all.   That eliminated kidney infections, something that can cause permanent damage.  Bladder infections aren’t as much of a concern because the linings of the bladder regenerate over time.   I asked about hygiene and found out that when I was a child, doctors thought hygiene could cause bladder infections but in recent years determined hygiene rarely causes UTIs.  

What the doctor said was that some bacteria has the ability to eat through the lining of the bladder closest to the urine.   This layer is thin and is non-stick, so the bladder can be emptied completely.   When the lining is compromised, the bacteria can hide behind it and lies in wait for the antibiotic to pass, only to return and reinfect the bladder.

The good news is the lining regenerates, but the infection needs to be completely wiped out.   We had two options: a low dose of one antibiotic for four months, once each day or a high dose of another antibiotic for ten days, two times per day.   Both options work well, it was up to me.   My daughter has so much medical going on I went for ten days.

We scheduled a three month revisit and shortly after we left the office I got a text message the prescription was ready.   When I was at the drive through to pick up the prescription, the pharmacist came over and asked over the mic, “does your daughter swallow pills?”  She’s never had to swallow pills and this medication isn’t available in a liquid version.    I said thanks and we’d do our best.

Last night we told my daughter she could have ice cream and we’d put the medicine on the top, crushed up.   That went well for about three bites and then she complained of the terrible taste, saying she thought she was going to vomit.   It took two glasses of milk to get the taste out of her mouth.  I tried a bit of the ice cream to see if it was that bad—it was—I couldn’t get the taste out of my mouth with the tiny bite for over half an hour.

This morning I talked to my daughter about swallowing pills without chewing.   She’s helped me put my vitamins in my little seven-day container so she knew I took “pills”.   I put them in her hand and said I swallowed all four every morning with one sip of water and I knew she’d be able to do so easily with one pill.

My husband broke the pill in two, got some yogurt and two bites later the pill was down.   It was a small victory, but it felt like a big one after the unpleasant experience from the night before.   I didn’t want her to be fiercely opposed to the medicine.   Hopefully the remaining nine days will go “down” just as easily.

The Big Boy Update:  We were leaving the Mini Milers youth running practice on Tuesday and my son was in the car with me.  He noticed someone on a bicycle.   And then he noticed another person running.   He asked me, “mom, is today ‘Physical Day’?   Everyone is exercising."

The Tiny Girl Chronicles:   My daughter acts like she’s not paying attention, but she listens to everything.   The doctor said it was important to drink seven cups of water each day.   She asked me when we got in the car how many water bottles full that would be and we figured out it was over five times.   She asked for water at lunch and has been trying to drink a lot, as well as go to the bathroom more.   She doesn’t complain about the bladder infections, but I think she wants to be done with them enough to try and help in whatever ways she can.

Balance and Motion

My daughter’s class worked on a science unit recently titled, “Balance and Motion”.   Before they started the unit the students wrote down their questions about balance and motion.   My daughter’s questions included:

• How does a snake slither?
• What does a dolfin eat?
• How dows water moov with out wind?
• Wut is moshin?
• Wut are people made of?
• How does a carit grow?
• Wut is a vois box?
• Wut is a bear made out of?

Then they discussed what scientists do.   My daughter wrote:

• Ask queshjins
• Study
• Find dineusors bowns
• Are inspiring
• Are smart

The did experiments over the next few days including: adding counterweights to help balance shapes in stable positions using clothes pins, finding a way to get a pencil to balance on its point, changing spinning motion in a top, and balancing a crayfish on its nose (I’d like to have seen this one).

It’s interesting to see what my children are doing in school.   I don’t know what I was doing in first grade, I have the vaguest memories of that time, mostly where the classroom was in the elementary school I attended and the location I sat in the classroom.   I don’t even remember the teacher’s name, although I remember she was quite old and became ill during and had to be replaced with a different teacher part-way through the school year.

The Big Boy Update:  My son hasn’t wanted to talk about how he’s done in school the last several days, but today he got in the car when my husband picked him up, saying he’d had a great day.   He’s very happy right now, bouncing around the house, playing happily with his sister.

The Tiny Girl Chronicles: When we were leaving the restaurant after dinner on Tuesday night, my children had some pennies Margaret had given them to throw in the fountain at the entrance.   My daughter’s wishes were:  to have infinite money and to have her own chocolate factory.   My son jumped in and told her she shouldn’t say her wishes out loud or they wouldn’t come true.   So her third and final wish was a secret, she told us.