Summer Hot Chocolate

We went to brunch twice while on vacation last week.   In the list of drink possibilities there was hot chocolate and my son and daughter decided that’s what they’d have.   Without whipped cream they both  said.

A few minutes later the hot chocolate comes to the table with a cup of ice smartly brought by the waitress because she predicted complaints on temperature.   After reducing the hot chocolate to barely lukewarm chocolate both children seemed to be happy with their beverage selections.

A few days later at the brunch with Chase from the show Paw Patrol, my daughter ordered hot chocolate again.   This time there were little marshmallows in their mugs that melted almost as fast as we put ice cubes in it to cool down the drinks.  

My son looked at me and then at his drink and said, “hot chocolate in the summer is really weird.”

The Big Boy Update:  After dinner tonight while my husband and I were cleaning up I overheard my son say in a hushed tone to his sister while looking our way, “um, don’t tell the older people…”

The Tiny Girl Chronicles:  My daughter wanted to collect shells when we went to the ocean and the inlet  while on vacation.   What she liked doing more than collecting the shells though was cleaning and sorting them on the deck at the house though.   She would ask for a cup and a bowl and she’d move the shells around, cleaning them, then sorting them and then (after putting them back in a single pile) dividing them up again.    While I was out on the deck during one of her shell cleaning times she looked up and said, “do you know why I collect shells?  It’s just one of my hobbies.   I like collecting shells.   It’s one of my only hobbies while I’m here.   It’s my favorite hobby.”   And then, ultimately after all the work she’d done, she decided she didn’t want to take any of her shells home, she wanted them to stay at the beach.

Bad Mom

I did something in the car the other day that would have shocked a lot of people.   We were on the way to brunch with my husband and nephew.   I was in the middle row and my two children were in the third row and in typical sibling fashion, an argument started.

This happens and it doesn’t always last for long and mostly it doesn’t result in violence, only in this case my two were hungry and trapped in a car together right beside each other, causing this argument to escalate.   I tried the reverse-psychology option on them first, telling them to please go right ahead and hurt each other and could they let us know if we needed to go ahead and drive to the hospital now?

Sometimes that works, sometimes telling them I’ll pull over and put them out of the car on the side of the road until they come to peaceful terms will cause the argument to diffuse, but something unfortunate happened next: my son accidentally broke his sister’s bracelet she’d just gotten from Grandma Shu.  Beads went flying and my daughter started screaming.

We were about two blocks from the restaurant and I don’t remember if I got out of my seat and climbed back to the third row before we were stopped or not, but I did.   And I lost it on my children.   I am not ashamed to tell you that I hit my son in the head with the palm of my hand.   Not hard, but enough to startle him, because what he was doing was hitting her.   My nephew said he saw my son elbow my daughter in the face.

Now for those of you who’ve been following this blog for a while, you know my daughter is in danger of damage to her eyes with mild head trauma.   Her retinas can re-detatch (is that a word), she can have bleeds in her eyes and pressure can drop.   And all that means more vision loss and she has so very little now, we just can’t risk it.

So I had to scare my son (and daughter) to, and I’ll quote myself, “NEVER EVER, EVER HIT ANYONE IN THE HEAD!”  I explained that they could hurt each other’s eyes.   I didn’t bother to explain that my son would probably be fine even with the most gruesome of punches launched at him by his sister.   I had to make it even because I didn’t want to make it look like my son had to treat his sister special or that my daughter was special in a negative way.

And I screamed it.   The whole time.   I bellowed at them.  I was for all they could tell, furious.   Because I wanted them to be scared.   I wanted them to remember and not hit each other’s faces if it was going to come to blows between them.  Then I asked if the understood and if they did, tell me what they should never, ever do and they could get out of the car and go to breakfast and see Chase from Paw Patrol (my daughter’s favorite).

My son immediately (and surprisingly to me because he’s stubborn) told me not to hit people in the head.  Out the door he went and I was left with my daughter who wailed and cried and moaned and just could not manage to say it even though she desperately wanted to go meet Chase.    After ten minutes she calmed down enough and we made it in time to lunch.

I felt sort of bad for the intense and out of control display I had done in the car.   I leaned over to Kyle, my nephew and told him I apologized for the crazy but I had to shock the children because I would far rather be though of as a bad mom than a mom who, through inaction, didn’t prevent her daughter from becoming more blind.

The Big Boy Update:  While we were in the car on the drive home something happened and my husband swerved the car suddenly.   I cried out some explicative which you’ll be able to guess when I tell you what my son said next.   He admonished me from the back seat saying, “don’t say that F word again in our faces, mom!”

The Tiny Girl Chronicles:  My daughter starts school on Tuesday at a new school.   We’ve been trying to make her feel comfortable about the transition, being positive about her upcoming new experience.   I was folding laundry when I heard my husband ask the question, “what’s the most important thing to remember about your new school?”  My daughter thought and then said, “the bathroom?”

I Didn’t Break My Face

I sent my best friend a text this morning telling her I broke my face last night.   She did not react well.   That’s when I realized I might have been exaggerating a bit on the whole “breaking” part.   I did inflict a nice little wound though.

I was heading downstairs to the basement to get a beer and I tripped.   I think I tripped on the edge of the carpet from the hallway.   There was a foosball table directly ahead of me and as I was stumbling I pulled my hands up to protect my face—only I had a glass in my left hand.   The class hit me right between the eyebrows.  

My husband heard me fall and came downstairs to find me holding a paper towel to my forehead with blood dripping down my face.  The adults who were still awake talked about what to do.   It was about an inch cut in an arc that matched (to no one’s surprise) the shape of the glass I had been holding.

So urgent care (it was after eleven o’clock), emergency room?   Or butterfly closures?   At this point I’ve had to do this with my children a number of times.   Keeping the tissues connected to facilitate primary healing is very important.   Stitches will do that for a wound that won’t stay closed.   This was easily closed very accurately because the cut was so clean.    So we went for butterfly closures.    No one had to wait for hours at the emergency room to find out they would do the same thing.   Stitches?  I don’t mind them, but I think my husband did a bang up job fixing my banged up face.

So today I have two large, white, butterfly closures with some dried blood stains between my eyebrows.   We’re traveling home and stopping to charge the car, go to the bathroom, get food for the children, oh, and clean up the vomit from my son getting carsick.    I don’t really mind how I look because I know it’s important to help the wound heal with as minimal a scar as possible.

Some people bring home a t-shirt as a memento from their summer vacation;  I might be bringing home a scar this year.

The Big Boy Update:  My son was eating some breakfast this morning and I asked him if I could try it and have a bite.   He didn’t want to share so I said, “please?”   After telling me no again he told me in a confident tone, “you can just eat it in your mind, mom”.  

The Tiny Girl Chronicles:  On the drive home today my husband jerked the wheel to pull us away from a car that was drifting into our lane.   I cried out and the car beeped it’s proximity alarm.  My daughter asked from the back seat, “what’s all that racket, Dad?”

This Little Girl That

Sometimes I run over with cute blog things about one child or another.   Sometimes it’s about both children.   While we’ve been on vacation my daughter has been doing her darnedest to be social with every member of our family, including those that are somewhat reticent to be engaged.   She’s been successful on almost all fronts and my family, knowing about this blog, have come to me with all sorts of things she’s said and done.   So tonight is mostly about her.

The Tiny Girl Chronicles:
The Pirate Ship:  At the boardwalk the ride she like the most (I think, gauging from the amount of smiles) was the Pirate Ship.   The first time she rode it my husband helped her and her brother board it and took them to the last row, knowing those extremity rows would have the most movement.   She smiled and smiled and you could tell she loved every bit of the motion.   After that and a few other rides we got ice cream and lemonade and then she asked me if she could go again—stipulating she wanted to do it herself.   I said sure and guided her to the steps, which had a turn in them.   The ticket taker realized something was up when she didn’t know where to hand the tickets off but he let her find her own way, this time not in the last row, and for all I could tell she got just as much joy from the ride the second time around.   He helped her off and guided her to the exit area and I told him loudly from far below, “she wanted to do it herself.”  He nodded and we both smiled.

Only Girl Singers:   My niece, Nicole, was trying to introduce my daughter to some music she liked.   My daughter was apparently balking at a lot of her choices and finally explained, “I only like songs where girls are singing.”  Nicole and I talked about it and we do listen to sings with male singers, but apparently those aren’t the ones my daughter likes the most.

Grass Angels:   We went to the playground close to the house today.   On the way back my son and daughter were doing the bit where they run to the next intersection and then stop before the street crossing.   I couldn’t tell what was happening as I walked towards them because my daughter was on the ground.   Then, as I drew close I realized, my daughter was making “grass angels” like snow angels, only much less noticeable but not any less fun.   As we got closer to home she did this at every intersection.   She loved it.  

You Can’t Have a Brownie:  My daughter and Nicole made brownies before dinner tonight.   There was some disappointment across the children, young and old, because the brownies were for after dinner, even though that would make them less-warm at the time.   My daughter told her cousin very authoritatively, “If you don’t eat dinner, then you can’t have a frownie”.

Blackberry Picking:  Uncle Eric has a blackberry bush.   This bush is small and in the corner of the yard, two flights of stairs down from the main living floor of their house.   My daughter told me this evening, “I need to go outside, I’ll be right back.”  The mom who has a blind child in me said, “be careful”.   She headed off with a confident, “I will”.    She reappeared about ten minutes later with a black, ripe blackberry.    From a bush with very few ripe berries.    Picked by a child who can barely tell colors at all now.

The Big Boy Update:  My son has been watching a decent bit on YouTube.   The content is all child-appropriate, and it’s motivated him to create Lego things and be more creative or more motivated.    Today he told me while we were at the playground, “Mom, I want to be on YouTube.”   I told him I had a YouTube channel, what did he want to do on his videos?   He had grandiose plans, none of which would be easily executed.   I told him I would be glad to help him so to think it through and we’d get a plan and post something and share it with our families.  

The Four-way Tunnel

We’ve been doing all sorts of things on our vacation with family.  Most notably, consuming calories.   Or at least that’s what it feels like I’ve been doing.   There were donuts (three days now) and cinnamon buns.   We had lasagna that was so good I overate to the point of discomfort with a side-effect of looking pregnant to my son.   There were crab legs, lobster, shrimp and fish.   And don’t forget the pancakes.

We also had ice cream and Kona Ice and junk food snacking.   Oh, and beer.   My brother-in-law makes beer and has on tap four of his beers to select from at their tiki bar in the basement.  This year featured a new entry in the beer category, KaiPA.   It’s like an IPA only it was the first batch of beer their son, Kyle, made and KaiPA it was named when the batch turned out to be quite good.

We’ve been on jet skis, taken boat rides, swam in the lagoon, and walked to the beach.   We’ve shopped at the local beach store for beach necessities like sandals and t-shirts for gifts.   And we’ve sat around the house and done a lot of nothing—one of my favorite vacation pastimes.

Today we took the boat and some jet skis to the inlet where the sound meets the ocean.   We anchored the boat and ran the jet skis aground and let the children do that thing they do where the get their entire bodies covered in sand and experience no discomfort at all whatsoever, furthering my theory that children’s nervous systems aren’t fully developed yet.

After eating our lunch of hoagies and chips some of us sat on the boat and talked.  Others got out and walked on the beach.   As I looked over a few minutes later I saw my two children, their cousin Kyle (ala KaiPA) and his girlfriend Madison doing something in the sand.   Kyle and Madison were working deliberately while my children dug furiously.    I yelled out, asking what was up?

My husband said, “they’re building a tunnel.”   But this was no single path tunnel.   They were at ninety degrees from each other and were trying to make a four-way tunnel meet in the middle.     Digging went on for a bit and then suddenly I heard cries out from the beach.    They’d made it.   They had completed a sand intersection underground.    And they were happy about it.

I don’t know how long the sand tunnels lasted, possibly not long because another thing children excel at  is trouncing on or destroying something once it’s completed.   No one seemed upset though as we called out to get back on the boat, we were heading home.

The Big Boy Update:  My son is apparently much like his cousin, Kyle in many ways.   As we headed back to the house after our afternoon at the inlet my son pulled a towel over his body, curled up and fell asleep.   Kyle did this when he was a child too.   My son was still asleep a half-hour after we got back, not waking even as the engines were revved up and cleaned out once docked (not a quiet process).

The Tiny Girl Chronicles:  My daughter had run into something for the second bad time yesterday.   My husband had her in his lap making sure she was okay when she said to him, “today is a bad day”.   Meaning she was hurting herself more than usual.    I think today has been a good day though.

The Hairbrush Battle

My daughter hates to have her hair brushed.   It’s like a battle where she wants to run away but knows she’ll get in more trouble if she does.   He hair is sort of like one of those rats nest-type consistency.   It was long without bangs and that required management so it would stay out of her face.   Sometimes—rarely—she’d sit still long enough for me to french braid it but mostly we’d put elastic bands in it and hope the majority would stay out of her food and the painting work she loved to do at school.

Then I gave up on long hair.  I had wanted her to have long hair since she was born with almost pure white hair but it was slow-growing, fine and breakable and it seemed a losing cause for most of her first five years.   We had gotten bangs cut once before but it was at the beginning of her vision loss when she was put on multiple types of systemic steroids and she ballooned up in weight, looking nothing like out thin little girl.   Maybe it was because of that that I shied away from bangs, even though it would clearly keep the hair out of her face.

But I got fed up with the hair brushing battle and we cut her hair short with bangs.   And she looked cute and we found out her hair was a lot thicker than we’d realized when we cut the weight off.   Now her hair is long enough to put in a pony tail or a “bunny bun” as she calls it, but it also stays out of her food and face and goes easily behind her ears when she wants to push it back.

But that hair brushing battle still remained.   You’d think I was a horrible parent, making her suffer through the simple act of getting her hair in a marginally less-messy state before school each day.   And then I had an idea: I’d let her brush her own hair.   The simple suggestion of her brushing her own hair (she loves being capable) has changed everything.    What’s interesting is how she brushes her hair; she isn’t gentle, she isn’t slow with the tangles, she aggressively brushes through all her hair in the morning quickly so she can get to the next thing on her little girl list of things to do.  

Sometimes the solution to a problem is just to go about the situation in a different way with children.

The Big Boy Update:  My children went to the boardwalk again today, this time with my in-laws.   There was a special for the day for a wrist band giving unlimited rides and this suited my son just fine.   I think his favorite one was what was called the Gravitron when I was growing up but was relabeled to look like an alien spaceship.   My son loved going into it and experiencing, “zero gravity” as he floated up to the top of the ride.   He was tall enough to go into the dark machine all by himself.   He wasn’t scared at all and he didn’t get nauseated from the spinning motion.   He loved it.

The Tiny Girl Chronicles:  My daughter loves the rides at the boardwalk too.   She was telling people about it when they got home and I heard her say, “I was very angry, it didn’t go as fast as I liked.”  When we asked her what ride it was (I still don’t know the actual name) she told us it was, “the whipping car”.

Welcome to S.I.C.

We went out to brunch this morning.   My sister-in-law picked up my niece from an overnight she had had with some friends and we met them at a restaurant in the boardwalk area of the small town, Sea Isle City, they live in on the New Jersey shore.

We didn’t realize there was a farmer’s market happening which meant there wasn’t a lot of parking.   As we drove around one of the blocks my brother-in-law said, “there’s a spot if we can turn around and get it in time.”  And we did and got lucky and got the spot.   My husband was able to do a fun demo where our Tesla Model X parallel parks itself.   Perfectly parks itself.   I’m not good at parallel parking because I’ve had very little experience given the street dynamics of the city we live in but I can say I was officially jealous of the skills with which our car effortlessly parked itself.

We went into the restaurant and sat across two tables because there wasn’t one that would fit us all.   We had chocolate milk with whipped cream, waffles, bacon, eggs and other breakfast foods which were devoured by all.   Then we headed back to our cars with plans to go out on the jet skis for a trip through the trails.

As we approached our car there was a piece of paper stuck to the windshield that read:

What a way to make our day.   What a great message.   The anonymous author welcomed us to Sea Isle City (S.I.C) and the comment about flying referred to our license plate ITCANFLY (because the car has wings with the falcon wing doors and is darned fast).    The postscript it sounds like the note writer has a Tesla on order, maybe one of the Model IIIs that just started rolling out this month.

I love our cars.   Every single day.

The Big Boy Update:  Children can push your buttons.   I think it’s an innate skill they’re born with.   I try to remain calm and not lose my temper but I regularly fail.   Yesterday after snapping at my son he announced loudly, “Mom, you’re the queen of mean.”

The Tiny Girl Chronicles:   My daughter loves animals.  She also loves to help.   This morning she was in our bedroom when we heard a lapping sound and realized Taylor, their dog, was drinking water out of the toilet.   We moved Taylor along and didn’t think more of it.   But my daughter had other ideas.   She left and then came back to our room a few minutes later saying, “I checked and Taylor’s water bowl is empty.   I was going to fill it up, but I wanted to make sure it was okay first so I came to ask you.”   I didn’t know she even knew where Taylor’s water bowl was.

The Bridge and the Boat

My daughter asks a lot of questions which is just what most five-year-olds tend to do.   Her questions a lot of the time are the same kinds of questions any child would ask, but some of her questions are about things she would know about without asking if she had sight.   My husband and I try to explain things to her in a way she can connect with without functional vision.

We have to go over a bridge to get to the island on which my brother- and sister-in-law live.   It’s a small island and they live close to the bridge so the children know we’ve almost arrived when we cross the bridge.   I started talking to my daughter more about the bridge yesterday, saying boats and jet skis go under it and when we’re out on the boat going to the inlet, we always go under the bridge.

Then later in the day we were driving back onto the island I told her to listen for the change in sound when we started going across the bridge.   Because it’s made in sections there’s a rhythmic thu-thump, thu-thump that you can feel and hear.   I told her we were going up because the bridge was tall and could she figure out when we started to descend and that meant we were past the half-way mark of the bridge.  She announced, “we’re off the bridge now” when she stopped hearing the bump bump of the bridge sections under the car.

Later we all decided to go jet skiing as a group to the inlet.   My daughter and I were on the same jet ski so I told her as we got close to the bridge we would be going under it.   I asked her to see if she could feel when we went in the shadow of the bridge and were out of the sun?   And then we all yelled to see if our voice bounced off the bridge and echoed back.    We did that and she liked it, and we practiced again as we returned home.

I thought about my daughter a lot as I was riding on the jet ski.   I closed my eyes and listened to the sound of the engine and wind.  I felt the vibrations as the jet ski revved and sped us along and I felt the wind on my body.   I also noticed how the jet ski turned left and right as we navigated the channel.   And I wondered what it was like to be blind and have no idea what’s coming up and why we’re turning and changing speeds.   She didn’t know where the other jet skis were so we told her when she asked saying they were up ahead or beside or behind us.

It was an interesting experience, seeing what it would be like to be blind, even if only for a few minutes.   My daughter is fearless though and never seems bothered by her lack of visual information.   Just now she came off the dock by herself, found the steps to the house and ascended two levels, walked safely around the grill and opened the door.   She called in, “Uncle Eric, can dad and I go for a jet ski ride?”  Uncle Eric said that would be fine and to be careful.   My daughter called back, “we will” as she closed the sliding glass door and started to carefully find her way back down two flights to the dock where dad was busy getting the jet ski ready.

The Big Boy Update:  We were all getting on jet skis yesterday afternoon to go to the inlet.   My son and Aunt Kelly backed out first and as the jet ski revved up my son joyfully exclaimed, “O  M  G!”

The Tiny Girl Chronicles:  My husband just got in from running this morning.   He was hot so my daughter thought they could get in the ‘galoon’ to cool off.   So now they both have their bathing suits on and they’re swimming in the ‘lagoon’ together.   Or rather my husband is swimming—my daughter is floating around on a huge rubber duck raft and laughing as she’s blown around by the wind.

You Wouldn’t Know or When Do You Tell?

My daughter is for all intents and purposes almost completely blind.  She can see enough to keep from running into things, but that doesn’t work one-hundred percent of the time.   She relies on a lot of other skills she’s gained to know how to move around safely.   She wants to be safe because the alternative is hurting herself, and that’s never fun.

When we’re out in public or an unfamiliar area, my daughter holds the wrist of the person she’s walking with.   She uses clues she gains from her feet such as knowing she’s gone off the sidewalk when her foot feels grass instead of concrete.   She also asks questions about what’s around her and what’s up ahead.   The adult walking with her typically gives her information in advance such as, “there’s an intersection coming up so we’ll stop until it’s safe to cross” or “there’s uneven concrete right ahead, I’ll let you know when to step up and then we’ll be turning left” or “there’s a family coming towards us with a stroller so let’s move to the right”.  And above all else, my daughter is cautious and careful and she trusts the information she gets from her guides.

So strangers seeing us mostly have no idea I’m walking with a blind child who may not even know they’re there.   The very thick glasses she wears make it hard to see my daughter’s eyes which are unfocused and not looking at things like a sighted person would be doing.   A lot of times we’ll alert her to what’s coming up such as, “there’s a little girl holding a dog sitting in a seat by the door to the pastry shop.”   This gives my daughter information and she might ask a question out loud like, “can I pet the dog?”   So I’ll ask the girl and bring my daughter over, putting her hand on the back of the dog.

The question is, how many people realize she’s blind?   This is a question I’ve asked myself countless times when we’re in public places like stores and airports.   And the next question I ask myself is do I say anything?   In almost all cases I say nothing.   Sometimes people figure it out but most of the time they  don’t, probably thinking there’s a little girl who isn’t paying attention or is having too much fun and isn’t looking at her surroundings.

And then there are times people do realize and when this happens it's almost always a positive experience.   I’ve never had anyone ask me, “oh, is she blind?”   I remember a mother and son sitting by us at the airport as we were waiting to board.   When she figured it out, she helped her son share and play with his toys, showing him by example that he could give my daughter the toy by putting it directly in her hand.  

I don’t tell people my daughter is blind for two main reasons, first I don’t want my daughter to feel she’s anything other than a normal child.  And second, because I don’t want her or us treated differently because they think she has a disability and is less-capable.

And yet there are times I do say something.   For example as we were returning home from our most recent Detroit trip we were heading happily to the terminal when my daughter bumped into a man, or maybe he bumped into her, I didn’t see it.   The man was effusively apologetic, saying he was so sorry he ran into her and it was all his fault.   I looked at him, pointed two fingers at my eyes and shook my head as I then looked at my daughter.   He realized what I meant and then nodded his head.   Then I said, “I think bumping into people is just part of being at the airport”.   He laughed and said, “I think you’re right” as we parted ways.

So do I tell?  Not unless I think I need to.   Do people realize my daughter is blind?   I think it’s a lot less than I would have thought when we first started on this vision adventure.

The Big Boy Update:  My son is so good with the compliments.   Last night we had lasagna a neighbor had given to my brother- and sister-in-law.   I love lasagna in general but this one was just the way I like and I happened to be very hungry.   I had two plates full, some beer and garlic bread to top it off.   And then I was full.  Very full.   As I was helping my children get into bed my son looked at me in my loose sundress and said, “you look like you’re gonna have a baby, mamma.”

The Tiny Girl Chronicles:  This morning my daughter and I went to the pastry shop to get donuts, cinnamon buns and crumble for the family.   We had done this same donut trip two days before.   As we walked down the street I said to my five-year-old, “I don’t remember if the shop was on forty-fourth or forty-fifth street.”   My daughter said, “it’s on forty-forth street, mom.”   I asked her how she remembered and she said, “because Aunt Kelly told us last time and I’m a very good rememberer.”

Nothing

I don’t think we did anything today.   Otherwise known as nothing.   We got up and the children were entertaining themselves without needing adult intervention.   Breakfast was eaten and then more playing happened on the children side while the adults did as much nothing as we could manage.

Suddenly it was lunch time and sandwiches were made followed by bouncing several large yoga balls and a “Wubble” that needed patching after a while.   The Wubble has been a big entertainment feature of the trip with its elastic nature and grabability

Suddenly it was mid-afternoon and in order to hold the children off for dinner we went to get Polish Water Ice.   A lot of stickiness was had by all, mostly on the children but a significant bit on the adults due to the transitive property of dirt children seem to have mastered.

Then we came back to get into the lagoon and throw the children on the two-seater large inflatable duck.    And that was fun—until it started raining.   So we all retired to the hot tub.   The children lasted longer than the adults mostly because the adults wanted to sit in the hot tub while the children wanted to splash and dive jump on everyone foolish enough to remain in the water.

So now we’ve made it to beer o’clock and the children aren’t waning in energy.   Lasagna is in the oven and we’re looking forward to our niece arriving home from visiting a prospective college for next year. Bedtime will probably come too soon for the children and far too late for the adults.

But I only have one thing to say:  ahh, vacation.

The Big Boy Update:  The night before we went on vacation my children were keyed up, full of energy and not tired at all.   I was busy packing and after the third time going up to tell them to settle down I told them, “go to sleep or there will be consequences”.    My son did not like this at all, telling me, “wait, wait, you know if there will be consequences I can just get a knife and kill you?”   Ouch.

The Tiny Girl Chronicles:  My daughter parrots a lot of the phrases we use as adults.  Hearing them come out in her tiny little girl voice with her own intonation always makes me laugh though.   I don’t even remember what I said but my daughter informed me, mispronunciation and all, “don’t be re-dick-lee-ous!”

Can I Run Now

Imagine not knowing what’s out in front of you.   Imagine what it would be like not knowing if you were going to run into something and hurt yourself.   You don’t know if that something is hard, sharp or rough.   You have no idea if it’s at head height, will slam into your shins or will come from the side.   And then imagine your day was like that every day, all day long. 

That’s the world my daughter lives in with the small difference in that she has a very tiny bit of vision that tells her when things are looming in front of her—but not always in time to prevent running into them.   For instance, a large, dark trash can on the road she’d see, but the pole for a street sign she wouldn’t, and unfortunately it’s the latter that’s the more painful one to collide with. 

My daughter is happy and energetic and friendly and most of all energetic.    But she can’t run.   Or to be more specific, she won’t run.   She has been hurt so many times she is very cautious when it comes to moving fast—because the faster you’re moving, the more it hurts when you hit something.  

She will run, but in small bursts like running down the side yard to get to the play set or down the hall to the steps.   But she’s never really able to do that, “carefree” running children do so much of the time in their childhoods. 

Lately she’s been asking if she could run.  This morning while on vacation we were walking four blocks to get donuts and my daughter wanted to run.   We were on the sidewalk and it wasn’t perfectly even and there were driveways and inconsistent hedges, rocks and grass all along on both sides.   But she knew it was a sidewalk and she wanted so very badly to run.    

I told her it was safe for her to run.   And she started this hesitant, cautious shuffle run with her hand out in front of her face to protect her.   Initially she would wander off to the left or right but fairly quickly got better at staying on the sidewalk.  

She and I came up with a plan (since she was ahead of me and not being guided by my arm).   She would listen for the sounds of cars which would indicate she was close to the next cross street.   I would tell her, “okay, stop” when she was close and then we’d cross the street together. 

She did this all the way to and from the bakery.   Then when we went to the beach later in the day she wanted to run again.    She was more confident and didn’t hold her hand in front of her, knowing I’d yell stop if she was getting close to something.   That arm down by her side also gave her a more even stride, even though she was still holding back some on speed and confidence. 

When we came home from the beach she was running from the start to the end of the block and stopping herself shortly before the intersection (just before I was about to tell her to stop).   She was so happy running.  I need to get her in a mowed grass field somewhere and see how much speed she can put on without the fear of injury. 

The Big Boy Update:  My son wasn’t listening today.   He was also aggravating his sister intentionally.    His sister was complaining about everything.   Oh, and she wasn’t listening either.   So I snapped.   I yelled and I grabbed their arms and drug them down the steps so we could finally get going to the beach.   My son wasn’t happy at me at this point either so he wanted to walk with dad.   A few minutes later my husband came back to me and said my son just told him, “mommy may be pretty, but her attitude is far from pretty—way far from pretty.”

The Tiny Girl Chronicles:  My daughter and I were on the deck at my brother- and sister-in-law’s house today.   She had just come out and asked me, “is Taylor out here?”   Taylor is the dog.   I thought I heard her behind the table and looked through the chairs and saw her tail.   And then she was gone.   Gone, from the second story deck—suddenly.   And then I saw it: they had installed a dog door flap at the other end of the sliding doors.   So I showed my daughter.   Would you like to guess who spent the next fifteen minutes climbing in and out of the dog door?

Deceleration

We’re in the car today, our “Flying Car” because it has Falcon Wing doors and it can fly down the road. We’re heading north to visit family and our trip consists of three Tesla Supercharger stops, one ferry ride, one child that has intermittent car sickness and one blind child who only wants to run.

My husband has planned the trip around rush hour traffic, super charger locations, ideal time to stop for lunch and the ferry schedule.   And so far things are going well.   Oh wait, I spoke too soon, my daughter is just now saying she has to go potty and she can’t hold it and it’s too late and we’re on a road with no stops for several miles.

Driving in the electric car is comfortable and quiet.   There aren’t engine vibrations and you can ask the car to play any song you want.  

I’ve been driving an electric car almost exclusively for over a year so I forget how things work in a conventional internal combustion engine car.  Earlier this week I was in Detroit and had a rental car.   I kept getting confused because when I took my foot off the accelerator I expected the car to slow down.   But it did this thing called “coasting” I’d forgotten all about.   I wasn’t getting the deceleration I had expected—deceleration that told me the battery was being charged through regenerative braking.

But back to the trip…  On the whole it’s more complicated to plan a long trip in an electric car, but it isn’t necessarily longer.   We have three stops, two short, just enough time for a bathroom break, and one longer about the some time as grabbing a fast lunch.  

So I’ll take the electric cars any over a gas-powered vehicle.  The squabbling children in the backseat I might be willing to trade for by the end of the day if anyone is interested.

The Big Boy Update:  On the road today we had to stop several times at stop lights on secondary roads. My son wanted to get there so he could get out of the car and move around.   Grumpily he said, “it’s a red light.   No on likes red lights.”

The Tiny Girl Chronicles:  My daughter went to the bathroom with me at lunch today.   She found some brailler on the Koala Kare baby changing table and then opened it up to see if there was more braille inside.   I told her there were some instructions and they were each written in multiple languages.   I told her I saw Spanish, English, German and then she interrupted me say she was good at telling languages.   She felt all over and told me there was definitely English and Spanish and Japanese and she was pretty sure there was “New York Spanish” as well.

Toilet

My phone fell out of my pocket this afternoon, straight into the toilet.   I dove my hand down there without even thinking (I was just sitting down) and the phone at first seemed to be okay.   Then the screen started changing colors and I knew I hadn’t gotten it in time, which would have been hard since it was completely submerged.

Fortunately I could limp along and back up the phone, unpair the watch and then do a second backup in preparation for getting a new, less-wet phone.   Timing isn’t ever great but we’re leaving to visit family tomorrow morning and I was in the middle of packing.  

A few hours later and I have a new, functioning phone that’s going to be loading from cloud backup for some hours and a long list of things to get packed.    The children are excited to be going tomorrow to visit their cousins.   They’ve been talking about going for weeks.

Tomorrow we have a long car ride with multiple super charging stops and a ferry ride everyone is looking forward to.   It’s our favorite vacation of the year and it all begins tomorrow.

The Big Boy Update:  Nana was with my son the other day and she asked him if Papa should cancel his golf to play with them instead for the day.   My son said, “I want Papa to play golf because I want him to be happy.”

The Tiny Girl Chronicles:  My daughter and son love their sitter, Morgan.   My daughter was talking about all the people she loved the other day and told me in particular, “I’m not going to forget about Morgan until I die.”

The Things We Don’t Notice

My daughter notices things the rest of us don’t.   Without the sense of sight she takes in the world in a different way, observing things we don’t even realize.   I’m going to get used to this happening at some point but for now it still impresses me when she points out something that’s so obvious to her that I would have never even noticed.

For example, on our way to Detroit we had time, and like a good mother, focused on eating healthful foods, I told her we could stop in at the candy store in the local airport terminal to get a few pieces of candy before we boarded the plane.    She selected some strange gummy options and I talked myself into adding Lemon Heads to the bag before we checked out.

She rations her candy and saves some for her brother and father and keeps it in her backpack.    Yesterday after surgery (or the lack thereof) we went to the mall to have lunch, throw pennies from her panda purse into the fountain and get some candy before heading to the airport.    

We were in the penny throwing phase of our mall visit and talking about what we were doing next.   She informed me it was ice cream followed by candy.    I mentioned she still had candy from the day before so she could only get three pieces today.  I also mentioned that the store in the mall had a different selection so she could get some other things.    Then she said, “yes, and the other candy store has carpet and the one here doesn’t”.

Of course she was right, but with all the colors and fun looking candy bins, what sighted person would notice the floor material in a candy store?   And yet my daughter does notice.    I wonder what other things she knows about that everyone else overlooks because we’re doing exactly that—looking.

Another thing that was interesting was the tall seat discussion/disagreement she and I had while getting lunch at the mall.   I’d placed the order and while waiting for our food I suggested we find a seat.   My daughter said she wanted the tall seats.   I told her, after looking around the food court, that there were no tall seats.  

She said yes, there were and headed to the perimeter of the circular food court area.   I looked out and saw nothing but a wooden wall where she was standing.   I told her again that there were no tall seats.   She said,  “no, mom, over here”.   And I still didn’t believe her.   So I went to fetch her after putting our drinks on a non-tall table.   Where did I find her?  At the one section of bar-height chairs on the perimeter of the food court, just beyond where I could see.

She remembered.   She’d mapped the location in relation to Chick-Fil-A and she knew they were there. She didn’t rely on vision to let her know there were tall seats, she knew because she’d sat there before.   And the sad thing is—I’d sat there with her but because I didn’t see it, I didn’t remember it.  

I’ve got to stop doubting her when she says she knows what she’s talking about.

The Big Boy Update:  My children are having some fear issues lately when going to bed.   My daughter started it and my son has caught it.   I’m not sure the reason but we’re working through it.   Tonight after the children were in bed my husband and I were talking and putting up the dishes from dinner when my son came out of their room and told us he’d had a nightmare.   We’re not sure he had actually fallen asleep but he did seem scared.   I offered to walk him back to his room and put him to bed but that wasn’t good enough he said, “because when you’re around me I’m not scared”.   So he’s in the basement with me now, lying on the couch with a blanket while I write this blog post.   Hopefully he’ll be asleep by the time I finish.

The Tiny Girl Chronicles:   Speaking of fear, when my daughter and I arrived home from our long travels yesterday, my husband was still at a board meeting and my son was away with my in-laws.   I’m not sure what my daughter was worried about but she kept hearing things—thumps, bumps, walking noises, etc.—in the house as I unpacked and put up our things.   She wanted to be right beside me no matter where I went.   After the third or fourth thing I didn’t hear and wondered if she was making up she told me with an air of confidence, “this house has to be haunted”.

The Smelly Nose Thing

My daughter had no eye surgery today.   That’s not to say we didn’t travel to Detroit and go through everything we would for surgery, it’s just we don’t know until she’s in the OR.  Nor, for that matter, does her doctor.    Some people have eyes that are relatively stable.  Your vision declines as you age, you have a cataract that slowly progresses or you have some specific event like a retinal tear that’s diagnosable.  

My daughter’s eyes are somewhat like going through a haunted house—you know something scary is probably just around the next corner, you just don’t know what it’s going to be.   And then sometimes, just to throw you off, nothing happens, there’s even nice surprise, like the calm before the next unexpected event.    Perhaps that’s not the best metaphor but for almost the last two years it’s what it feels like sometimes.

Today Dr. Trese came in and we discussed how things were going (some vision was back albeit minimal).   My daughter demonstrated how she could, “fix my eye by squeezing it” as she described it, which afforded her some additional visual information.    My daughter was ready to go back to the OR at this point because, “I’m hungry, I want to do the smelly nose thing now”.  By this she meant the anesthesia mask.  Earlier she had been offered multiple scents (rubbing scented chapstick inside the mask) but declined saying she didn’t need it.

In longer than I expected, Dr. Trese came out, which was worrisome but gave me more time to get some Starbucks from downstairs.   My husband and I didn’t expect Dr. Trese to do anything today because her vision was improving some as opposed to declining and with her eyes, less surgeries is on the whole better.    The first thing Dr. Trese said when he walked out was, “her left eye is looking pretty good."

The pressures in both eyes were normal with the left at seventeen, holding from a month ago.   Since we’re uncertain if her eyes produce any internal fluid at all, this is good news in that either the aqueous flow is draining very slowly or the ciliary bodies are producing some measure of fluid, helping to keep her eyes from collapsing.

Her retina in the left eye is also attached.   Yes, I said attached.   And I’m going to be honest here, my husband and I have taken extensive notes every time we’ve talked to my daughter’s doctors and I know they are doing their best to keep us informed—but we’re not eye surgeons or specialists and we don’t always know the right questions to ask.   But this was new.   The amount of detachment we’ve had reported has fluctuated over time, the location and how many folds has been confusing aside from the very scary pictures I posted here way back at the start that made my daughter’s retinas look like crumpled bedsheets inside her eyes.  

At any rate, he says it’s all down and attached, which is quite helpful as she’s never had anything done to the retina on that eye.   She’s had surgeries including having the pressure increased and the lens removed and there are other areas damaged in the eye, but the retina itself hasn’t had the special treatment like the right eye with the Silicon Oil and PFO  added to try and lay the retina down.

Okay, so retina not detached, check.   But there is some pigmentation underneath the retina with a clumping and distribution in the main focal area.   This is likely affecting her vision as a result.   And unlike the hematoma it may not resolve.   That’s not to say it won’t, it’s just not the expected or default course of events.

Dr. Trese suggested we have an EUA in a month to get a refraction.   You heard that right?  I’m finally getting the refraction under anesthesia I’ve wanted for what seems like twelve years now.   Please let’s not have anything go wrong in the next month because getting the correct lenses on her (well, her left eye) might make a significant difference in what she can see.

Dr. Trese left me with that interesting little quaint smile he has, adding a comment almost like he couldn’t help himself.   He said, “she has the nicest spirit.   She came hopping and dancing into the ER and made everyone smile.”

As soon as he’d left, I texted our pediatric ophthalmologist with an update from Dr. Trese.   I asked if we could get on her OR schedule for a refraction and pressure check in a month.   Dr. Grace has been wanting to do some other diagnostic tests as well and they have my daughter in a study which means at no cost and yet lots more data from this new and exciting imaging machine which is FDA approved but since the mounting bar isn’t, they have to do another trial.    How interesting is that?

This post is late tonight and I haven’t responded to text messages today mostly because with no surgery today we decided to come home a day early since we didn’t have a follow-up appointment the tomorrow morning.   Travel was complicated, I almost inadvertantly killed my laptop (it’s okay, I’m nursing it back to help with pliers, don’t ask).   And when I’m done with this post I’m passing out because I was up at 5am and I’m tired.

But yeah, good day overall.   Have we gotten back what we lost from the hematoma?  No.   We’re down vision points (if we’re keeping score).   But we did earn some bonus points for fully attached retina and given my daughter’s eyes, I’ll take what I can get.

The Big Boy Update:  My son is with my in-laws today.   This afternoon Papa suggested they drive their golf cart over to play a few holes.   My son said, “no, no, no, I’m not going to play golf.”   Papa told him, “your father started about the same age as you are and he loves golf.”   My son replied, “just because one person has a talent for something doesn’t mean someone else should have a talent for it.”

The Tiny Girl Chronicles:  Our rental car had radio.  You know, that AM/FM stuff children don’t know about.   We were on our fifteen minute ride to the hospital and my daughter had been stuck listening to FM morning talk show and commercials as I switched from station to station trying to find something.    She said in a disgusted voice from the back seat, “I want a song; this is getting ridiculous.”   I had forgotten how much non-music there is on FM radio.   I had to agree with her.

I Smell Baked Beans

Tomorrow is double eye surgery day.  My daughter and I are in Detroit tonight with an early arrival time in the morning.   Uncle Bob is also having follow-on eye surgery from his recent retinal detachment.   He has a vitriol detachment now after the retina was reattached, a complication that happens to approximately one in ten patients.   So we’re thinking about Uncle Bob tomorrow as well when it comes to eyes.

My daughter and I got to the airport today around dinner time and as we found our gate we prepared for a bit of a wait due to a delay in departure time.   I told my daughter we had time to find some food so let’s walk down the concourse and see what we could find to eat.    We hadn’t gone one gate down when she suddenly said, “I smell baked beans!”  (My daughter loves baked beans.)   I looked around and the only thing I saw was California Pizza Kitchen, only wait, there was some barbecue place with a small sign just to the side.  

So we walked over to find…baked beans.   And mac & cheese and green beans, all things high up on my daughter’s list of favorite foods.  She and I shared a plate together with me eating most of the other items, being told the baked beans were hers and hers alone.

Tomorrow my daughter may or may not have surgery on her left eye.   The vision has improved from zero to something and knowing Dr. Trese, he will likely elect to do nothing the eye is still healing itself.

The Big Boy Update:  My son and husband went to the pool this morning for a play date with two boys and their father from our neighborhood.   It was cloudy at first but the sun came out a little bit later.   After some time in the pool my son said, “dad, turn around”.   He then touched my husband’s shoulders and asked if it hurt.   Dad said, “maybe a little”.   My son told him in a confident tone, “I think you’re sunburnt”.   It turns out, he was.

The Tiny Girl Chronicles:  I was listening to one of the recordings our play therapist air drops to us after the last session with my daughter.   They were having a nice time “playing” together, hiding and then finding some shells in kinetic sand.   Dhruti said the time was almost up and she might not be able to finish finding the shells my daughter had buried for her.   My daughter said in a happy voice, “I can help you, that’s all about friends!”

Of Course I Can Lend a Hand

My daughter is a hard one to keep entertained.   When her vision was better she liked being on her iPad because she could see something and her therapist said to let her see as much as she could and don’t be afraid to let her have the iPad because at some point she might lose more vision—and she did.

So now she likes to “listen” to shows.   She loses interest fairly quickly though and she gets bored.   There’s not a lot she can do that doesn’t require seeing something.   She can help with putting the laundry or dishes away because it’s a fixed task she can do with someone else.   She loves to do “special time” with a parent or friend and she especially likes to do projects or crafts or some game of her creation.

But in large part she’s going unstimulated for a good portion of her waking hours.   She’s doing well in school because she has a sensory impairment, not a learning disability, but it’s still long and slow and hard and she has to work in entirely different and more challenging ways to learn something a sighted child would be able to pick up quickly.

So she’s bored.   She’s really good at not getting upset about it but sometimes it comes out.   The other day I asked her if she could help me with something.   She replied in almost an offhand manner, “of course I can lend a hand.  Because I’m just sitting around.   And most of the time I’m bored.   I’m always bored.”

We’re trying to keep her mentally stimulated but it’s hard to do without being one on one with her constantly and the other demands on our life make it hard to dedicate as much time to her as we’d like to.

The Big Boy Update:  My son did not want to go to a birthday party today because he said the birthday girl was, “too bossy”.   I told him it would be nice if he didn’t say that to her or her parents when he got there and perhaps the other friends at the party would be fun to spend time with.    When I went to pick him up he was the last one there, playing with Lilah, who’s birthday it was, and they were for all appearances, best friends.   Also, my son’s shoes were soaked and he’d been in the creek with sand and dirt all over him.   I made him strip down to his underwear before letting him get in the car.   But he had fun.

The Tiny Girl Chronicles:  My daughter and I were playing the musical instruments yesterday.   She and I played the triangles and listened to the sounds.   She said to me, “that sounds like Julia’s wind chime in Maryland.”   I didn’t even know there were wind chimes at their house.   My daughter never misses a sound though.

Woah, I Ran Again:  Eight miles today.   I told my best friend I was going to have to start training for distance again because I took such a hiatus from exercise in general that I’m not in the shape I was.   Eight miles should have been nothing.  So should twelve or even sixteen miles but I can tell I ran and tomorrow I might even be sore.   But it was nice taking a break, I can’t complain.

Soft Shoes, Purple Bags

Today was the last day my children will ever take their purple bags to school.   They were in summer camps this summer and brought their bags with lunch boxes, snacks, bug spray, sunscreen and other necessities with them every day, just like they’ve done for the last five years.   But camp is over now as we have upcoming family vacation planned and then my daughter starts at her new school. 

It’s also the last day my daughter will ever wear “soft shoes” at school.   Montessori schools have children change into indoor shoes when they’re in their very quiet, orderly classrooms.  I don’t know of any other school for children that does the same thing.   For five years they’ve changed in and out of shoes as they came in and out of the classroom and they are comfortable with the process.   My son will continue this routine next year but my daughter is up for a different experience at her new school.  

They both will need backpacks for the coming year as my son will be in first grade (or Lower Elementary as his class will be know to him for the next three years).   We’ll have to have them pick out something they’ll like to carry every day to and from school and get them used to a backpack versus a shoulder bag.  

I took a picture today of their now too small soft shoes on top of one of the very dirty purple bags as it’s an end of one thing marking the beginning of another:

The Big Boy Update:  Did I mention my son loves his headphones?  I can’t remember but just in case I didn’t, he loves wearing them.   He uses them when he’s on his iPad but when we ask him to take a break he likes to keep them on.   He is apparently not even remotely close to being in the autism spectrum (which I was wondering about).   Maybe he just likes to drown the rest of us out.

The Tiny Girl Chronicles:  My daughter’s VI teacher suggested getting a yellow backpack for my daughter because yellow is the one color children retain the most when they lose their vision.    My daughter seems to like emojis, maybe I can find one with emoji smiley faces on it for her.  

I’m Afraid of the Pinball Machine

My children are working through some fears of late.   They’re becoming more aware that there are things in the world they could (or should) be afraid of, and that’s good.   But what happens at this age is they become afraid of irrational thing.   And that’s okay too because as adults we know their fears are irrational, they just don’t have the experience or knowledge to know so.

My daughter has been afraid to go upstairs to get dressed in the mornings for the last few weeks.   Mind you, she just came down from her room to find us after waking up, and if she remembered to get dressed before coming down there wouldn’t be an issue.   But she forgets sometimes and then her fear kicks in.   In this case she isn’t trying to work us over to have us bring her clothes, she really is scared.   If you go upstairs with her she wants to turn on all the lights and have you make sure the room (she was just in) is safe.   And she wants us to do this in the daylight, not night hours.

There’s also been a lot of, “what was that noise” activity happening at night after we shut the door, telling them to stop talking and go to sleep.    Last night they took turns coming out of the room and asking over the bridge, “mommy, I heard a thumping noise, what was that?”  I told my daughter I was  tapping dishes to get the water off them before drying them.   Then there was the walking noise (which was me walking) and then the voice noise that called their names.   I said that was me, yelling up at them, saying their names and telling them to quiet down.

The best one so far though was today when my son wanted to play Minecraft on the Xbox in the basement.  My husband has it set up so all my son needs to do is press one button on the TV remote, turn on the game controller and wait.   He stands at the sensor in front of the television and it recognizes his face saying, “Hello Greyson”.   Then in my son’s little six-year-old voice he can say, “Hey Cortana, play Minecraft” and it loads.   Hell, my son taught me how to do this because I didn’t even know how.

But I digress because this post is about being afraid of things.   So when my son asked if he could play Minecraft on the Xbox this afternoon I told him sure.   Then he asked if I could come help him.    I knew he didn’t need help though so I told him I knew he was capable and could do it without me.   Then he said in a shy voice, “but I’m afraid of the pinball machine”.

And I have to say, if I was six-years-old, I might be afraid of the pinball machine too.   It’s not the lights or the sounds, it’s the theme.   We have a Walking Dead pinball machine with zombies and guns and blood.   I told my son the pictures were just ink on paper, he didn’t have anything to fear.    But he replied, “yeah, but it’s what’s in those pictures that I’m afraid of.”  

So I walked downstairs with him until he got Cortana to get Minecraft loaded at which point my son was so mentally engrossed the pinball machine was out of his mind.

The Big Boy Update:   My son and daughter were not getting along with each other, me or the world this morning.   I went in to our bathroom to get ready, hoping they would settle down with some pancakes in them but no, my daughter came flying in only minutes later, screaming and shutting the doors.   I heard my son but didn’t know what was going on until I went out to check.   I found him sitting at his place, eating his pancakes, with the hammer from the garage beside his plate.   What exactly is that for, I asked him?  He said it was to break down the door because his sister had locked him out of our room.

The Tiny Girl Chronicles:   My daughter asked me yesterday, “can you tell me a grown-up word?”  I told her sure, and said things like mitochondria, dolichocephalic and sesquipedalian.   She agreed those sounded like grown-up words.   But we all knew what she was asking, right?  So she tried again, “is there anything inside your mouth that we can’t say?”   Wow, she nailed that one.   I had to admit that yes, some words she wasn’t allowed to say.   So of course she wanted examples.   I got away with “damn” and then she said, “my brother says we can’t say ‘shit’.  Oh, I just said it…”

Everywhere I Go I Hurt Myself

My daughter is in a constant state of infirmary.   I don’t know how much of it is her and how much of it is the vision impairment, but her legs are a mess of cuts and scrapes.    I remember as a child noticing how I had scabs all over my legs and arms while my friends and classmates seemed to have unscathed limbs.   I wasn’t sure if it was because I was reckless out in the woods, a slow healer or just plain clumsy but it was that way for most of my childhood.

My daughter is in the same situation, although a lot of her injuries come from running into things she didn’t see.   She’s pretty good at handling getting hurt.   We try not to coddle her and have been backed up by her play therapist saying her temperament is feisty and she wants to figure out and deal with things herself.   I asked if we should hug her when she’s hurt or let her have her space (she doesn’t like to be touched when she’s dealing with pain).   Dhruti said we should give her a choice, asking her if she wants a hug.   She said knowing we’re there to hug her is more important than the hug itself, which she might not want at the time.

But she does get hurt.    A lot.   Thankfully she is getting a tiny bit of vision back.   Let’s say a normally sighted person has 100% vision.   My daughter has about 1% in her right eye, consisting mostly of lights and maybe a color or two.   Her left eye was at about 10% for a while until the cataract progressed, taking her down to 5%.   Then the hematoma from probable head trauma (mild head trauma, but mild is catastrophic given the state of her eyes).  

That took her down to what seemed to be 0% in the left eye.   We’re now back at what I’d say is 3-4%, enough to know something is looming out there to avoid or feel for with her hands.    We’ve lost the peripheral vision she had and she can’t ride her bike or scooter.   Maybe more to the point she won’t try because she knows she can’t see enough to do so.

But she’s not running into everything anymore.   But accidents still happen, for instance she miscalculated where the porch steps were yesterday, ending in her falling down and scraping the entire back of her thigh on the bricks at the bottom.   She’s fine today and acts like it was nothing, but then that’s what she always does.

Sometimes I get a window into her mind though.   The other day she told me, “everywhere I go I hurt myself.”   It’s hard to keep your composure when your child says something like that.

The Big Boy Update:  My son still has eczema.   He had fierce eczema when he was a toddler.   We were slathering him with lotion and steroid cream every day just to keep it manageable but he seemed to grow out of it.   It flares back up though from time to time.   Usually he won’t let me put anything on it even though I see him scratching a spot to the point of dermal damage.   Tonight was different though.   Perhaps it was because he wasn’t ready to sleep and wanted to come downstairs to see what I was doing.    He crept into the bedroom and then told me something about hearing sounds and being afraid.   Then he showed me his armpit.   It was a mess.   He wanted to see a picture so he could zoom in and look at it.    I put on some medicine and then took him back to bed and then I came down here to write this.   Hopefully he’s fallen asleep and is more comfortable now.

The Tiny Girl Chronicles:  The above blog post topic was sort of a downer, so let’s end on an up note with my daughter for tonight because while she has a lot acting on her negatively in her life, she remains a very positive little girl.   This afternoon she was playing with some musical instruments and making up a song.   She stoped to tell my son and me, “I love daddy, mommy and my brother—they’re the best people in the world.”   Then she thought for a second and added, “And me.  I love me too.”  

The Right Words

My best friend stopped by tonight.   She has a presentation for her annual review tomorrow with her chairman and wanted to talk through some things.   Typically we do the talking through bit during a run but we’ve run into challenges making that happen, this morning being a her stuck with a nauseated child and a reasonable bit of exhaustion.   I knew she was really tired when she asked if we could walk instead of run.   She hates walking.   I convinced her she might be better served getting back into bed and resting instead of getting together and when she agreed, I knew she was more tired than she was letting on.

This evening she messaged me close to nine o’clock saying she was still at the office but could she stop by for a bit to go over some of what she was planning on talking about tomorrow.    People prepare in different ways, for me I think about the points I want to discuss in higher level bullet points or talking points but never talk it out.   If I rehearse, even once, it never comes out the same way again and I seem to be better the first time through.

My best friend is the rehearsing type.   We’ve been running partners for some years now and when she has a presentation or a meeting coming up she likes to talk through it, come up with the best words via discussion and then work through them again and again.   Tonight we worked on the goals she wants to achieve for her office—making them sound like opportunities instead of complaints.   It’s a fine line listing something as a “weakness” or “area for improvement” without making it look like you’re pointing out all your shortcomings.  

We came up with some good phrasing and hopefully she feels better about her meeting tomorrow.   But I did consider punching my husband  when he commented that I was so good at phrasing I’d make a good politician.

The Big Boy Update:  My son is missing a disc.   It’s a component to a multi-part transformer he got over a year ago.   Today he spent a lot of time going through containers of toys looking for the single part.    I came up to him a few hours later telling him I was very impressed because every area he looked in he cleaned up after he was done, putting everything back into the closet or bin.   I guess years of keeping on him to clean up after pulling things out is finally paying off.

The Tiny Girl Chronicles:  My daughter wanted to have a party today.   I didn’t think much of it until my husband came out on the porch where I was taking a call to tell me she had brought friends over—multiple friends that hadn’t come over before—to have a party in the basement.    My husband inflated some balloons and they seemed to have a good time until everyone was called home for dinner.   I was impressed at how quickly she threw the party together.   I’m going to let her plan her next birthday party.

Nosey-Wosey

See, now I don’t even know how to spell the title of this post because it’s something my children say and they’re not the best spellers yet.  We’ve been working on a lot of things in this household of late. “The broken record” being one of them—when you tell or ask a child to do something multiple times and suddenly it hits you, “I’m the broken record”.   The child has learned they don’t have to do that particularly thing on the first ask because you’ll ask again shortly if they just don’t bother to comply.

So there have been consequences coupled with crying and or yelling and maybe some screaming mixed in.   And as parents we’ve been steadfast in our position or stance while telling ourselves internally how we created the problem and vowing to do better going forward.  

Tonight my son was told multiple times he had to sit in his seat at dinner.   He tried putting one foot on the floor and half-standing and then came up with reasons he absolutely had to get out of the chair.    He was warned (more than once) that he’d lose dinner and not get dessert if he got out of the chair again.   And he got out of the chair again.   He was upset, thinking he’d get another chance at dinner, right up until they were going up to bed.   He ate most of it and probably wouldn’t have even eaten the rest but it was the principal of the thing I suppose that made him so distraught, angry and focused on that last bit of meal.  Tomorrow morning, he informed me, he wanted to finish his dinner before eating breakfast.   “Done!” I told him.   We’ll see how he feels about it in the morning.

Then later there was the. “no standing up in the bathtub” warning that went unheeded several times, causing my daughter to get pulled out of the slime bath (a product that turns your bath into green slime) and dumped unceremoniously into the shower under cold water to get the slime off so she could be toweled dry.    That was a logical consequence I hope she won’t forget for some time.

But before the whole out of the seat at dinner thing had even gone down my daughter was in trouble.  in her case she was throwing Duplo blocks at her friend, after being told not to throw them.   When I walked in with dinner my husband was in an uproar, something he doesn’t typically get pushed into, but I suppose hard cornered things being thrown at children’s faces was the point at which he drew the line.  

He sent my daughter to her room and told her she couldn’t come out until he told her she could.  She was hungry she wailed from the open door, not crossing the threshold for fear of additional consequences.   All she had to do was calm down and be quiet and she could come down but she went on and on.   She said she was trying but couldn’t help it.   And then she said, “I want nosey-wosey”.   My son leapt out of his chair and started heading up the stairs saying, “okay, I’ll come and help.”  We told him to come back down because the last time I saw him doing what I thought she was talking about, she was angry and upset about it.

But she asked again and seeing as how things couldn’t get much worse we told him to go up.   He happily ran upstairs and did something to touch her nose, saying, “nosey-wosey”.   And then…she laughed.   And giggled.   And then laughed really loudly.   She was completely over being upset.   She was invited down for dinner and it was all over.   And to think I thought my son didn’t know any real magic tricks…

The Big Boy Update:  In the tub tonight my children were playing.   My son grabbed my attention saying, “watch this…” and then he asked his sister, “what’s your worst fear?”  I held my breath because blind, vision loss, bodily injury because she can’t see where she’s going—you name it—I didn’t know what she was going to say.   What did she reply to her brother?  “You are!”

The Tiny Girl Chronicles:  I let my daughter ride the three blocks from our neighborhood pool to our house home in the front seat of our car.   I suppose she’d never been up there before and if she had, she’d never explored things.   She felt all over and asked, “what’s this?”  I told her that was the dash. Then she reached further up, touching the glass which explained was the windshield.   She asked, “could we open it?”  I got adult satisfaction out of explaining a word that was rather self-explanatory broken down into parts and easy for a child to understand.   So much easier than explaining why we, “hang up the phone” when we just push a red button on a touch screen.

And On a Sad Note

I got a phone call from Margaret today but I couldn’t take it.   Then I got a phone call from Uncle Jonathan, Margaret being his girlfriend.   I knew something must be up but I couldn’t take either of the calls at the time.   My husband got me a while later and told me Uncle Jonathan’s father had died due to complications in surgery today.

Tonight Jon came over to our house to have dinner with us.  In part we wanted to ask a million questions but we also knew he was drained from having one of he most surreal days of his life.   Hearing over the phone from a doctor he didn’t know about a surgery he didn’t know his father was having had ended in complications ultimately causing his death—and oh, could you call your brother and let him know because we haven’t been able to get in touch with him.

Following that call, Uncle Jonathan (honorary uncle but definitely considered family in our house) had to call his brother in what he calls one of the worse things he’s had to do in his life.   I can’t imagine because I haven’t been there.

We talked about all the complexities of managing his father’s estate, especially since both he and his brother are states away and not involved with his father’s affairs.  It’s a lot to find out and once that’s done, it’s a lot to do.   And funeral?  What did he want?  What needs to be done?  Who needs to be notified in his practice (he was a doctor)?   All these are unanswered questions that loom over Uncle Jonathan and his brother in the middle of having to deal with the grief of unexpectedly losing their father.

Our thoughts are with him.  My daughter expressed her sadness to Uncle Jonathan about his father’s death.   She said she was sad too.

The Big Boy Update:  My daughter has loads of eye drops.   The other day my son asked if he could help and both my daughter and I said sure.   He very carefully helped put two drops in each of her eyes and I told him I was so glad he wanted to help his sister.

The Tiny Girl Chronicles:   Today my daughter had lunch with her Vision Impairment teacher from last year.   We love Raffaella.   She has been such a kind and caring teacher and a wonderful resource for us for all things related to vision impairment.   Raffaella coordinated the lunch and when she told us her daughter, also visually impaired, would be joining them my daughter was excited.   Her daughter is in college but she and my daughter became fast friends.   As they dropped her off, Lauren said she was available if we needed anyone to watch the children.   I can tell you this, I’m excited about having her come spend time with the children.  I think my daughter is going to love having her come visit.

Some Things

Here are some of the recent things my children are into, have said or done.  I have to thank friends, family, sitters and neighbors for helping me out with this blog.   They all know i’m looking for interesting or funny things my children say.   Thanks for telling me about the things that happen when I’m not around.

The Big Boy Update:
Zach King Magician - My son suddenly wants to be a magician.   This is good, because his grandfather has been a magician all his life and I’m sure will be glad to be his mentor.   We weren’t sure where he was getting his enthusiasm and drive from until we found out he was watching Zach King’s channel on YouTube.   Last night he tried to hide dad’s sunglasses in his sister’s bed and the car key I’m not sure where because I intervened.   He was going to make them magically reappear when dad noticed them gone.    I convinced him something less breakable and crucial might be a better choice so he hid the toothpaste up on the shelf in the closet in a suit case.   I forewarned my husband who was very happy to have his magically disappearing toothpaste reappear.

On the Workbench - I came out into the garage the other day to find my son standing on our workbench, reaching to the very top of the tools hung on the wall.   I asked him what he was doing and he said he needed the sledgehammer because, “I’m trying to make my shoe become a rocket ship.”

Losing His Mind - Today I don’t know what happened to my son.   He lost his mind.  All he had to do was put on his clothes sitting right in front of him and then he could have the one thing he desperately wanted.   His agony dealing with the simple act of dressing was pretty darn epic.   He hated everyone.   We were all mean to him.    I tried to connect to him emotionally and physically but he didn’t want to be hugged.   I made him a glass of some juice he loves in hopes calories would help but he refused to drink it because I was one of the bad guys keeping him from his heart’s desire by requiring him to put on clothes.   Eventually he gave in but by that point the thing he had wanted to do he no longer cared about.

Hobby Kids - My son watches this YouTube channel called Hobby Kids.   He recently wanted to be adopted into their family which I explained would be complicated.  Now he’s decided he just wants them to come to his birthday party—which is six months away.   We just got his iPad screen fixed but we made him pay both in his own money as well as in time because we didn’t get the iPad fixed for some time.    My husband told me when the iPad broke and my husband took it away my son said in a sad voice, “I’m gonna miss Hobby Kids…”

The Tiny Girl Chronicles:
Simon Says - My daughter loves to play Simon Says.   She also likes to play the quiet game when she thinks we’re all talking too much.  She’s come up with a new game now though as she yelled out at the dinner table, “Simon Says one, two, three, quiet game!”

Losing a Tooth - My daughter doesn’t have any loose teeth yet; we ask from time to time.    Yesterday morning my daughter came downstairs to find me when she woke up.   She said, “I think I lost a tooth.”   I asked her to open her mouth so I could see but she stopped and said, “but maybe it was a dream?”   She still wasn’t sure so she asked me to check.   With all teeth still present we decided it must have been a dream.

Feeling Happy - My daughter is bored a lot.   I’m going to write about that an upcoming post because it’s something my husband and I feel like we’re failing at—keeping her occupied and happy.   And she’s said as much, indicating she isn’t being mentally stimulated because there are so few options of things she can do by herself and adult help is limited due to all the other things we’re doing.  So when my daughter said tonight, “where’s the purple ball?  Because I feel really happy today.   I’ve never felt so happy before.”  I have no idea why she was suddenly happy but we’ll take any happy we can get.

Getting the Puff Out

Back in time, around when my daughter lost her vision, my daughter had a lot of very large bumps on her butt.  (I’m not going to say backside or fanny or fundament or any of those other words because we just call it their ‘butt’ in our house).   Every time we’d talk to a doctor they’d ask a lot of questions, one of them being did she have any rashes.   And at the time she was wetting her pants because she didn’t want to take a break from what she was doing to go to the bathroom.   Doing that frequently gave her a mild rash but mixed in with the rash were these hard, large lumps.

This went on for a while with them getting bigger and then smaller and then new ones appearing.   Eventually we went to a pediatric dermatologist who didn’t know what they were, nor did her associate so they sent us to a specialist.   Fortunately, we’d already been seen by that specialist when my daughter had her full workup when she was admitted after the initial EUA when we found out her retinas were detached and the host of other mess was going on with her eyes.

Two biopsies later we found out she was having abscesses—deep abscesses—but we still didn’t know why.   She was put on an antibiotic to help them resolve because, get this, the abscess material they extracted didn’t culture into anything specific, which might have just been how the sample was handled or a host of other reasons.   Since the punch biopsy procedure had been done to her twice, both times with her in terror causing us to need six people in the room to hold her down (mind you, she’d been numbed, but still, trauma is trauma) we all thought going for a third round just wasn’t worth it.

The antibiotics resolved them and since that time we’ve only had one other incident on her leg.   One day after weeks of this thing on her leg looking like it needed to be lanced as it was close to the surface, I told my daughter we had to do something.   She probably hated me for the rest of the hour (she recovers quickly) and I was able to break through the surface fairly easily with the result being oozing brown liquid coming out.    That particular abscess healed but because it was there for so long she has a scar in the spot still.

Since that time over a year ago nothing has happened.   Until my husband noticed something, again on her leg, this morning.   I woke up to my daughter screaming.   I don’t know that she was in pain so much as the fear of pain—of being ‘poinked’ as she calls it.   My husband got the spot open and applied a bandaid.  

When I got up my daughter told me dad had, “gotten the puff out of my knee”.   Hopefully that’s all the ‘puff’ we’ll encounter and there won’t be a return of the abscesses.   When she had them all over her butt it was uncomfortable for her to sit and she wouldn’t let any of us get near her to look at them.  

The Big Boy Update:  My son has been very interested in Mine Craft.  My husband has fixed it so my son can turn on the Xbox and talk to the speaker to get Mine Craft started.   I’ve got to tell you, he’s pretty creative and has built some interesting things.    My father-in-law was visiting over the holiday and was asking my son what he was doing.   Papa said, “I don’t know how to do  Mine Craft.”  My son replied, “c’mon, it’s the same as when you were a kid.”

The Tiny Girl Chronicles:  My daughter came into the room this morning and I told her about something—I can’t even remember what it was I told her now.   She said, “yeah, that happened to me too…only it didn’t.  It was something else.”

The Candy Stand

The children were running around the house this afternoon dressed up as a ninja, a lego ninja and a candy can girl.   And if you’re counting, I have only two children which means we had a neighbor’s child over.   The dress up was fine but then they decided to add in an interesting twist—candy.  

Specifically, they wanted to have a “Candy Stand”.   It’s like a lemonade stand only they were planning on selling candy.   Fine, I said, only you can’t eat any of the candy.    They were fine with that and assured me they’d only sell, not eat, the candy.

They got everything ready and even improvised ways to flag down passing cars.   We helped them with a money collection container and gave them water bottles and some chairs to take to the corner of the street, one house up.

Their candy stand was open and I had to leave, so as I drove by I was their first customer, stopping in to buy a piece of candy and deliver drops to my daughter.   As it turned out, I had no change and no bills smaller than a ten so I asked for some change later after they reaped large profits.  

I headed off to a meeting and got a phone call an hour-and-a-half later from my husband saying when I got in could I check on them because dinner was long overdue and they were still at the stand.   In the meantime our neighbor had helped them with some lemonade and—get this—we found out they’d been eating all the candy.   Shocker, right?

They were happy (and sugared up) when they came home for dinner, not to mention full.   They had made two dollars each but that success was suddenly tempered when they found out they weren’t getting dessert after dinner because they’d already eaten dessert before their meal.

The Big Boy Update:  My son ran over to my husband tonight holding his knee saying, “I got a boo boo that just got boo booed again.”   My husband told him sometimes scabs came off and that was okay.   A bandaid fixed my son’s concern.

The Tiny Girl Chronicles:  My daughter fled from the deck into the house and headed over to the porch after dinner tonight, trying to escape from her brother.   She said, “if my brother comes out here to the porch I do not want to be with him because I’m not a good Greyson fan anymore—he’s a zombie.”

I Ran:  Yes, I ran.  I know, I thought I’d forgotten how to exercise too.   My best friend and I ran five miles this morning before our husbands had to leave and we had to return home to man the children.   I survived.   Actually, it wasn’t even that bad, but that’s largely due in part to the company.

Did She Faint?

Let’s talk about fireworks.   Last night.   Fourth of July.   My son was excited.   My daughter was sort of excited.    I’m not sure if she was fully sighted if the situation would be different because it’s getting hard to know how she would have reacted given the amount of time she’s been visually impaired.   But no matter now because he’s a he and she’s a she and they both have very different personalities.    She’s cautious and he’s crazy and there were plenty of fireworks my in-laws had purchases for last night to be lit up on the street to entertain both young and old alike.

We started the morning with those pop snap things in the sawdust that you throw on the ground that go bang.   My son loved them.  Apparently my daughter did too, even though she’s more sensitive to sound.   That’s where the similarities ended.

When it got dark we pulled out the sparklers.   There were short, medium and long—the long being the ones I got because I thought flame, sparks and fire further away from my daughter might be a good thing but no, she only wanted the short ones as the long ones scared her.   My son, you ask?   All good.   All exciting.   Most of this involved him running around yelling in the driveway.

Then my husband got the real fireworks out.  And real fireworks involve noise, specifically loud noise.   And that’s where my daughter drew the line.    She didn’t like it.   She couldn’t really see it, even though it was a brightness in the dark, although I did see her tracking the roman candles at one point.  

What my husband tried first were her headphones for her iPad.  That worked a bit, but she could still hear the noise so I got his noise cancelling headphones and stuck them on her, hoping it would make a difference.   Yeah, no go.   From the street, while my daughter was backed up against the front door my husband said in a normal voice, “this one says ‘loud and clear'”.   My daughter cried out, “I don’t want loud!”

When the bangs and whistles started to happen my daughter opened the door and fled inside.   My son, who at this point had gotten concerned about her came up to me and asked (when the lights and sounds were over), “did she faint?”

The Big Boy Tiny Girl Who’s In Charge Story:  I was working with my neighbor’s daughter today, teaching her how to make jewelry, showing her how to open jump rings, make wrapped loops, lending jewelry making pliers and helping her select supplies to take home with her.   My daughter wanted to be involved but she really couldn’t help so I told her it was a one-on-one type of thing.   So she said, “can I be in charge of the boys then?” referring to my son and his friend who were over.   I told her certainly, only I wasn’t sure if they’d listen.     Fifteen minutes later I came downstairs to find the boys watching something on television they shouldn’t have been watching and eating Pez candy for a snack (at dinner time).   When I asked my son what he was thinking he said, “but you said my sister was in charge and she said it was okay.”

Out-Energized

Some days I have a lot of energy, hopefully those days coincide with the days my children are out of school like on the weekends.   Some days I don’t seem to have the ability to keep up with them.   Today has been one of those days.

The title of this post, out-energized, isn’t about my children though because they can always top me when it comes to energy and enthusiasm.   Today I’m talking about my in-laws.   They seem to have their own fuel cell, battery pack, tank of gas, etc.   I don’t know how they do it, but I love it when they come to visit, as without a doubt, do my children.

Fireworks are going off in the front yard now and my daughter is crying so I’ll be back tomorrow, hopefully with more energy, to write about another day.

The Big Boy Tiny Girl Snaps Update:   You know those snaps that you throw on the ground around about Fourth of July time that make a bang?   This morning my children must have gone through five boxes apiece with my mother-in-law and they had a blast.   My daughter tonight with the louder fireworks noises however isn’t so thrilled.    Maybe she’ll like the sparklers, sounds take her aback more than other people with her diminished vision.

Travel and Commitment

As a Real Estate agent we work with all kinds of people helping them find or sell their homes.   Different people have different expectations of their agents.   One of the most common is commission and how much an agent gets paid and where that money comes from in the buying and selling process.   That’s a topic for another blog post.   This post is about more about time commitment.

Usually clients are respectful of agent’s time, although most people have high expectations that their agent will be available whenever, wherever and for however long they need.   And that’s fine, that’s our job—we’re there to help them when we can.  

Every now and then there’s a client that’s completely disrespectful of time and it feels like you’re being used more as an agent than actually being there to help.   But again, that’s not common and certainly isn’t typical of most clients.

I had a client this weekend that just confused me this weekend though.   They were traveling from out of town, a distance that I knew was far and later found out was all the way from Nebraska, taking multiple days to get here.    They wanted to look at houses but weren’t particularly responsive in email or text to help me narrow down what to show them.  

We thought we’d found some candidates but given the current market, two of the five houses went under contract before we could get to see them.   This was in part because they cancelled and rescheduled with me on time and day four times.

Today we were finally going to meet when I got a text saying they were running over an hour late and could we move the showings (for the third time) to a later time.   When we finally met I found out they were driving over three hours today to see houses before returning to Nebraska.

I’d been working with the wife, who was very nice.   The husband once we met him got more involved and we discovered he had entirely different criteria for what he wanted and the houses we’d set up weren’t anything he was interested in seeing.   We stood around for an hour in the first home (which was new construction and had dark hard wood floors—both a no go for him) before we abandoned the remainder of the showings.

They asked me to send them some listings with new criteria (criteria I would have loved to have from the start) and then, apparently, they planned on heading back home in the morning on another two day drive.

They are relocating to the area and do need a home and we’ll continue to work with them to find them something that fits, but it seems to me like they could have saved themselves time and driving hours if they had been more communicative from the start about what they were looking for collectively as a family.  

The Big Boy Update:  My son is playing Mine Craft this afternoon.   He had his headphones on and was talking to himself as he played.    I heard him say to whatever creature he’d just created, “that’s so cool you’re blind.  I always wanted to be blind.”

The Tiny Girl Chronicles:  Nana was singing to my daughter this afternoon.   My daughter said to her, “do you know what, Nana?  Your voice sounds nice as it can be.”