Auditory Manicure

Someone gave my daughter a fingernail file some months back.    The file was useful on one side for the purpose of filing nails or other unsuspecting objects with the back side was bedazzled in large pink glitter.    To the casual observer glancing over, looking at my daughter calmly filing her nails with streaks of sunlight refracted around the room from the glittered side, it would appear she knew what she was doing.   But they would be wrong.

My daughter knew I was working on my nails and she knows her nail file in a drawer in the bathroom.   She wanted to get her nail file and do her nails beside me.    I watched her with the file for a few—she knew one side was for decoration and one side was useful and had found the useful side.   But what she did with it was to file against the main body of the nail, not the edge where it’s grown out.    It was a logical, largest area type of thing to go for, and since she couldn’t see what I was doing  she winged it.

I showed her how to file the ends of the nails and told her to listen, that the longer the nail the higher a sound it will make as we file it down.   She got a pretty immediate sense of what that meant and asked me to keep doing her other fingers and then her toes.    When I started on a digit she’d listen and then tell me based on pitch if it was a long or a short nail.

When we were done with her file I asked her if she wanted to use the buffer.   What was the buffer, she asked?  I told her it smoothed things out and showed her how some of her nails were not shorter, but still edgy.

She liked how the buffer made a lower noise on each finger and how it was easy and fast and made everything feel nice and smooth.   We ran out of time and didn’t get to the nail polish stage, which she has planned for tomorrow.

The Big Boy Update:   My son is having some issues with being bossy.   I don’t know if he’s trying to help or trying to be in control but it basically doesn’t work because other children don’t like being told what to do by another authoritative small child.   Some of the time he is actually being very helpful, but a lot of it is so he can get his way.

The Tiny Girl Chronicles:  My daughter decided to climb up on her dresser today.   She found on a tall shelf the snow globe and music box Uncle Jonathan got for them several years ago.   She loved the music and winding it up.   The “snow” is silver glitter so I told her if she went out to the sun she might be able to see the flashes of light in the globe when we shook it up.   Once outside in the hot weather she shook the globe and I asked her if she could see the snow.    Yes, she said, she could see it, but that’s not what she thought was going to happen.  She said in a sad voice, “real snow globes are supposed to make it snow outside!”

Another Situation

My children are best friends.  Okay, they’re not.   They’re mortal enemies.   That’s not right either.   I think it’s best said they’re best friend mortal enemies.    Still, let’s not get choosy though, isn’t that the way it is with siblings?

I picked up the children after school today and informed them we’d go to one of their favorite restaurants, Chick-fil-a, for dinner if, and only if, they worked harmoniously together for the remainder of the afternoon.   I was watching them; I was taking notes; dinner was on the line.

To say they were friendly and kind to one another for the remainder of the day would be largely incorrect, but they tried and we did go to dinner, although it was later than I intended because we had visiting children in the house and their parents later on in the back yard.   I didn’t realize our neighbors didn’t know the latest with what had happened to my daughter’s vision so I found myself explaining in a quiet voice off to the side where I hoped my daughter couldn’t hear.

Eventually we extricated ourselves and left everyone else playing on our play structure.   We piled into the car and were on the way to dinner when my daughter and son got into it again.   I raised my voice and told them I could turn around if they were planning on arguing the whole way there.     My son turned to his sister and said to her, “I’m not going to talk anymore, I don’t want to get into another situation”.

The Big Boy Update:   My son asked me this afternoon, “mom, why do I have curly hair?”  I explained in simple terms about genetics and my curly hair.   He said back to me, “I don’t want curly hair”.    I told him he wasn’t the first child who didn’t like the things he’d been handed down.

The Tiny Girl Chronicles:  My daughter likes to play the sound spelling game.   She will say, “mom what does <insert letter sounds here> spell?”   She did a very long one tonight after dinner in the car and I told her I didn’t know what that said because it was so long.   She told me, “I was trying to spell, ‘I don’t see very well’”.   Folks, this is the first time she’s ever admitted she doesn’t see well.   She said it so nonchalantly, but in the front seat of the car I almost got choked up.

Steps and Green Lantern

The Big Boy Update:
My son likes superheroes.   No, that’s not correct, he loves superheroes.   He wants to be a superhero and more to the point, he wants us to buy him things related to superheroes, specifically video games.   This, he’s been told isn’t happening but he is welcome to purchase games with money he earns.    He’s been finding out earning money is a slow and arduous process which involves something called, “work” and he’s gotten petulant about the entire ordeal—which hasn’t bothered my husband or me in the slightest.

Today his obsession is Green Lantern.   Our children’s favorite sitter was over for several hours today and she helped my son make a Green Lantern ring based on some steps my son found on a YouTube video.  Cardboard, a green marker and a glue gun were required but when I returned home he had a functioning (via his imagination) Green Lantern ring.  

This not being enough, my son wanted me to help him build another Green Lantern ring by following another YouTube video using Lego pieces.    I sifted and plowed through all our pieces until I found the fifteen specific ones he needed.   We didn’t have one in green, but that wasn’t a problem my son informed me because he could just color the yellow piece green using a sharpie.    Five minutes later the yellow piece as well as my sons fingers were indeed green, enabling us to continue with the project.

Now, armed with not one but two Green Lantern rings, my son is an imaginary deadly foe in our household.

The Tiny Girl Chronicles:  
My daughter is currently very blind.   She can’t get to our next door neighbor’s without help because she gets turned around in open spaces.   Her peripheral vision is completely gone with the blocked right eye due to scar tissue (and questionable function) and the hematoma in her left eye blocking most of her field of vision.   But she’s accommodating.

She wanted to go to the swings in the back yard today.   I took her hand and walked out onto the porch and watched when we got to the steps.   She had let go of my hand after carefully feeling forward with her feet to find the start of the first step.    Then she progressed rather quickly down the steps to the bottom.  

I asked her, “do you know how many steps there are?”   I didn’t, I’d never bothered to count because I rely on my vision to tell me when I’m reaching the last step.   Without hesitation she responded, “seven”.   And yes, there were seven steps.    She’s coping and adapting in ways we don’t even appreciate as fully sighted people.   Every day she amazes me.  

Lenamade Stand

My daughter still insists on pronouncing ‘lemonade’ as ‘len-a-made’.   I’ve given up trying to correct her so today we had a Lenamade Stand instead of a Lemonade Stand.    My son had the idea a while back when he wanted to buy something and didn’t have enough money.   He first wanted to have a yard sale (he still does) including selecting toys of his he’s ready to sell.   When he found out that was a more complicated venture he settled on a lemonade stand instead.

I’m not sure how much money they thought they were going to make, but they were both interested.    We had two lemons last week and both children decided that was a clear sign we were ready for lemon-based commerce so I went back to the store, got a stack of lemons and told them we’d do it this weekend.

We had planned on tomorrow but real estate is commonly busy on holiday weekends and tomorrow got booked so today was the day.   My daughter and her good friend, Madison from next door, made two signs to put on our little child’s table.  They were colorful.   Lots of stickers were used.  Both girls liked their poster more than the other’s, which is interesting because my daughter couldn’t see either one at all.   But no matter, we had a table, chairs, a sign and were ready excepting the lemonade.

My husband got home and said he was thinking later in the afternoon and hey, wouldn’t it be nice to make cookies too?   He went back off to do some work while my daughter and I made brownies with cookies mixed in (terribly delicious, thank Duncan Hines).   Then we got to the lemon squeezing.

My son was busy he told us.   Was only interested in the bit where the sugar was added into the lemon juice and would it be possible to call him down when we got to that portion of the lemonade making?    I told him yes, but he ventured down early and ended up being a pretty big help in the whole process, telling his sister when she’d, “killed it” meaning when she’d gotten every last drop of lemon juice out of a particular half-lemon.

Lemonade chilling and brownie cookies cooling, we waited for my husband who got home and posted on our neighborhood Facebook page that our stand was open.    The children were pretty excited although their mood waned when they got hit with the hot heat of the day.    One bucket of ice later and they were renewed.

We were out a bit over an hour and had some friends and neighbors stop by.   We closed shop when we sold the last of the lemonade and the children got to eat the last two cookie brownies.    They counted their money ($4.20 each) when they got home.   I’m not sure what their plans are yet but I’m sure I’ll hear very soon from my son who’s wish list is longer than Route 66 has miles.

The Big Boy Update:  My son decided it would be good to get the playdoh out and make weapons and gear for his Lego characters.   He was upstairs for over an hour making all sorts of additions to his characters.   They’re drying in, on and around the figurines now.   I’ll find out tomorrow what it all means.

The Tiny Girl Chronicles:  Roller skates.   That’s right, roller skates.   My in-laws gave my daughter roller skates two years ago for Christmas.   They bought them for her before she lost her sight and we didn’t know what her outcome visually would be so they gave them to her that Christmas.   She hasn’t spent much time with them but lately, in the past two weeks, she hasn’t stopped talking about them.   Today she’d had enough—she had to roller skate.   She was good at it, she told us.   She didn’t need our help and could we please just get them out of the garage from the shelf she couldn’t reach.   All day she put them on and off.   She put on the helmet and the knee protection and the wrist protection and she went all over the main floor—again and again.   She loves it.   She wanted me to leave it all out so she could go again tomorrow.    She had so many pratfalls today I think I’m going to have to take her to the chiropractor next week to make sure she’s okay.    But she’s having fun and she’s not bored and for a child who can see almost nothing, that is a very good thing.

Tired

I have been tired all day.   I’m so tired I don’t even want to be writing this blog post right now, preferring rather to be in bed.   I didn’t get out of bed until late, slobbed around all morning and then sat in a chair at our friend’s house this afternoon at the party we attended.  I don’t think I’m sick, but I can’t determine why I’m so tired.   I’m not missing sleep, I’m fond of getting a good night’s sleep.  

Perhaps tomorrow maybe I’ll be extra energetic to counterbalance today.

The Big Boy Update:  Our neighbors came to the door this morning to pick up something.   My daughter answered the door and decided to tell them, “we’re not going to school on Monday because it’s sensorial day.”   I told her I thought she meant, ‘Memorial Day’ to which she said, “oh, yeah”.    She knows the word ’sensorial’ because there are types of work in her Montessori classroom that fall under the category of sensorial.   She’s likely been heard that word far more times than she has the word ‘memorial’.

The Tiny Girl Chronicles:  We were riding down a road windy road going fairly quickly with the windows down.   My son yelled out, “incoming earthquake!”  When I asked if it was because of how the car was moving he said no, it was just an earthquake, that was all.

Public or Private School?

We got a letter in the mail yesterday with the public school assignment for my daughter for next year. Typically this wouldn’t be complicated because we already know what our base school is.   However with my daughter vision she needed an Individualized Education Program which deemed her needing the services of a, “program school” that served the needs of visually impaired children more specifically.

Within the county there are two elementary schools that are VI specific and there was one of the two we were hopeful we’d be assigned to—and we got the school assignment we were hoping for.   Only we’ve run into another quandary now.

One of the reasons we wanted to send my daughter to a program school was the amount of expertise available to help her with her sensory impairment.   This school year there are four VI students at the school and four VI teachers.   That’s a pretty impressive ratio.   The other main reason would be for my daughter to be around other visually impaired children.   And that’s where we ran into the snag.

Because while there are other blind children at the school, none of them are in the class she would be in and there is zero overlap in their schedules, and that’s a disappointment.    That means we’re considering having my daughter stay at our current private school and supplement her education there with VI teachers brought in during the week or have her attend the public school, even if she won’t interact with other blind children.

We’re trying to contact one other family we’ve met before that also might have their child attend the same program public school.   If their daughter is in the same class next year it would be a good thing.    We’ll hopefully find out soon.

The Big Boy Update:  My son was mad at me the other day.  He asked me if I wanted to die, because he had put dynamite all around the house to blow up for when he didn’t get his way.

The Tiny Girl Chronicles:  My daughter can’t see enough to go next door to see if Madison is home.   This is really sad to me.   She could do it easily before because she had enough peripheral vision to get a gauge on which direction she was going.   Now she can’t tell and with her cane training incomplete it’s like walking in a large open space not knowing how much farther you have to go or if you’re even going in the right direction.

Out of Control Adults

There’s a double rainbow visible from our porch right now.   It’s one of those strange spring days where it rains when the sun is shining.  The children have been running in and out of doors both to escape the rain and to experience it by getting wet while standing barefoot on the grass.

My son seems to be in a good mood, which is a good thing because he’s been having some trouble lately.   We had an appointment for him to see our play therapist this afternoon.   When I picked him up his teacher said we needed to have a quick discussion and thus followed a story where my son didn’t get to sit with the person he wanted to for lunch, so he told him he was going to stab him.

Kate, my son’s teacher, knew he was going to see Dhruti for therapy and told me additionally that my son had been very off all week.   On the way in the car I texted Dhruti a quick summary (my husband was driving) and she responded she would see if it came out in the session.

When we picked my son up I was surprised at what she had to say.   I was expecting her to say my son was worried (about his sister), concerned because he’s leaving his class next year and has been doing visitations to his first grade classroom, not able to handle the difference in schedule since his sister was in Detroit for several days and there had been a possibility they would stay for longer.

It wasn’t that at all.  He is apparently seeing a lack of control from the adults around him.   His perception is the adults should keep things in order around him and that just hadn’t been happening lately.   But what does that mean?   To be honest, I don’t really know because I only had two minutes to get a quick conversation in with Dhruti before her next appointment.

Some things have changed in my son’s world recently, most notably his favorite teacher had to leave school unexpectedly.   He was very attached to his teacher and while the new teacher is both capable and very lovely, it’s a change for him.    He not only has one new teacher but there is a teacher change mid-day and he has a second teacher in the afternoon.    So school may seem a little out of control for him.

And what about us, as parents?   Are we out of control?  Well, I did lose my temper at both children this morning but I’m wondering if it’s more about his sister’s eyes.   We have told the children countless times that the doctors are going to help her see better.   And yet things just keep getting worse.   Has he lost faith in the adults around him, wondering if we’re really qualified to do our jobs?

His behavior, while seemingly not related, is a consequence and a reaction in which my son tries to control things and when that fails, he gets upset (and apparently wants to stab people).   I need to get back up with Dhruti so we can understand how to help ameliorate his feelings and try to regain his confidence in us as adults.

The Big Boy Update:  My son has more faith in me as a driver than he does our car’s autopilot.   Every time I turn it on it makes a double beep sound.   While my daughter is delighted that the car is driving itself, my son tells me in a worried voice, “mom, no, you have to hold onto the wheel”.

The Tiny Girl Chronicles:  My daughter was eating a snack today with the door to our deck open and a breeze blowing gently in.   She said, “we got time.   We’re going back in time.”  I asked her who’s going back in time and she replied, “no, not really we have a thyme plant outside on the deck.”

8.7 Million

There are over 320 million people in the United States.   Of them, 8.8 million are blind or visually impaired.   That’s 2.7% of the population has significant difficulty seeing.   It also means we’re not alone.  

That’s a lot of blind people.   We’ve met a few and I’ve seen people with canes every now and then but it doesn’t seem like there are that many around.  The school my daughter may go to next year is one of two in the entire county that specialized in visually impaired children.   But there are only four children at the whole elementary school and there won’t be any other blind children in my daughter’s kindergarten class.

We’ve been told it would be good to have my daughter spend time with other blind children but that may not happen if she goes to the public program school.   If we keep her at our Montessori school she won’t be with blind children either.  

So I don’t know.  I don’t know what to do to help her sometimes.  We’re trying to figure out the best option for her next year but there doesn’t seem to be a clear answer yet.

The Tiny Girl Injury Chronicles:  My daughter can see very little right now.    She knows she should use her hands by putting them out in front of her so she won’t run into things, but she forgets.   This morning she busted her lip on the rail going down the stairs, ran into the island and then a door frame.   She’s in a constant state of infirmary and we’re going through multiple ice packs each morning.    Hopefully the hematoma will drop the the bottom of her eye or resorb soon so she can see something again.   She slept propped up last night and is fine having steroid drops each hour.   Her little body needs a break from all the injuries.

The Big Boy Update: on the way down the hall yesterday morning I heard my son jump and land heavily.   He did it a second time saying, “I couldn’t get you, shadow.   I will beat you, shadow!”

No Surgery For Now

My husband and daughter are home.   The ultrasound on her left eye today showed what appears to be an attached retina and vitreous, which is good news.   What does seem to be in her eye is a mass of blood and possibly some debris.    Dr. Trese has prescribed steroid drops in her left eye a minimum of eight times each day and sleeping in a propped up position so the blood will drop to the bottom of her eye and she can see better sooner.  

We’ll return to Detroit on June 5th for surgery.  If the left eye is looking good in that the blood is being absorbed, assisted by the drops, he’ll move to the right eye and open up the scar tissue blocking her field of vision.   If the blood isn’t permeating out he’ll perform a vitrectomy. removing some of her vitreous and the blood and replace it with an artificial substance.  

Overall, while no progress was made vision-wise this week, we at least know what’s going on and hopefully there isn’t anything additional going downhill in her left eye which provides her with her functional vision.

The Big Boy Update:  My son was in a cross mood yesterday.   He told me, “I don’t like it that you made me born.”  I asked him why that was but he ignored the question asking me back, “how many seeds do you have left?”  I told him I was pretty old and I probably didn’t have any ’seeds’ left at this point.   He sounded shocked and said back, “What? But you only spent two!”

The Tiny Girl Chronicles:  My daughter and her friend Madison spent about fifteen minutes tonight adding things to the shopping list by talking to Alexa.   The theme was, “with poop inside”.   I think they were a little upset when we told them the grocery store didn’t sell things with poop inside and we wouldn’t be filling any of their shopping list items.

Hematoma

My daughter was seen by her retina surgeon today.   The appointment was moved up because she’s had a rapid deterioration of vision in her left, functional eye and we’ve been quite concerned.   There were also plans to do surgery on her right, minimally-functional eye, but he postponed the surgery for the moment.

What he found was a large hematoma (blood) in both the anterior and posterior portions of her eye.  He wasn’t sure if her retina was attached or if her vitreous was also detached, because the blood blocked his view.    Her pressure was seventeen in both eyes, which is just where it needs to be, so that’s not a factor.   But the blood is blocking her field of vision, which is why she can’t see much at all right now.

He’s seeing her in his office tomorrow morning first thing to have an ultrasound done (A & B scan) to determine what’s actually happening behind the blood.   There is a chance my husband and daughter will stay in Detroit extra days this week to have him do unscheduled surgery on her eye if there are other, more damaging things, going on.

For now she’s having steroid drops once per hour in her left eye (which she loves).   The blood will permeate out fairly quickly, but it  will take time.   Dr. Trese said if she could sleep sitting up or propped up it would help her vision more quickly.

And about that refraction…no luck yet.   You can’t get a refraction through an opaque liquid like blood.    So for now we wait, and we hope this is only a hematoma caused potentially by a bump to her eye, and we hope it will resolve.

The Big Boy Update:  My son was mad at me this afternoon.   He went upstairs and slammed his door.   I didn’t react so he opened the door and said, “I’m gonna try that slam again”.   I did’t react the second time but he opened the door and said, “much better”.

The Tiny Girl Chronicles:  My daughter loves waiting in the infernally long line at the mall in Detroit for Chick-fil-a.   Tonight she decided she wanted her favorite food (and I think dad’s as well) so they went out for pasta instead.

iPad Woes

My daughter is bored.   She is so bored.   She can’t see much at all right now and yes, my husband and I are very frightened for her.   That doesn’t mean we’re not hopeful, but it does make it hard on her and truthfully, us as well because she went from being reasonably capable to capable but hesitant and so very bored.

There are things she likes to do like swing on the swings and play with her neighborhood friends, but we could always give her a break by letting her use her iPad to calm her mind from the visual struggle she’s been going through and hopefully get some reasonable visual information into her head in the case she looses all her vision.

She likes her iPad.   She’s so so on hitting the buttons, but she was able to find small things like the pause button and other items because she new their general proximity on the screen.   In the past week all that’s gone away.  She just can’t see and she’s frustrated and she doesn’t want to just listen to movies or shows.    She tried listening to music on the iPad yesterday but both she and I got frustrated quickly because she wanted to pick the song, was unhappy it wasn’t the song she wanted but couldn’t figure out how to select another song with the very small buttons and screen layout changes that were happening as she clicked around the screen.

Tonight she and my husband are in Detroit.   Tomorrow she goes in for surgery and we will hopefully find out what’s happened to drop her vision so dramatically.    Is it a drop in pressure?  Is the steroid they injected blocking her view?  Or has her retina detached again?   We don’t know but as long as it’s not permanent damage we’re hoping we can get her fractional vision back.  

So more tomorrow when we know more.  

The Big Boy Update:  My son and I were downtown at a street fair today.   He got two presents for his sister and ate more food than I’ve seen him eat in a long time.   On the way home passing through a neighborhood with old buildings he said, “that house is cracked up”.   It was, the brick was cracking and the overall condition of the building was poor.   We talked about how buildings get old just like people do.

The Tiny Girl Chronicles:  My daughter and husband are in Detroit.   It’s nine-thirty at night and they’re on the way to get a Krispy Kreme donut before she has to stop eating until after lunch tomorrow.   She usually doesn’t finish the donut, but she likes the trip and the smells and the friendly people in the store.  Oh, and the paper hat they sometimes give her.

One Snapchat Post

My husband told me this morning, “you missed all the excitement last night.”   He is a director on the board of trustees in our neighborhood and last night he was up late, with the police, trying to repel high school students from our community pool.   It wasn’t a pretty sight.   Well after the party had been broken up, people continued to arrive and flood the neighborhood.  

There was damage to the clubhouse pool deck.  Glass was broken and got into the pool, chairs were destroyed and a very large mess was made.   But no one was hurt.    Overall the response from the neighborhood has been mostly positive.   Some families are concerned and angered but many families are understanding and supportive of the parents this happened to.

The thing that bothers me the most is the student that caused the party made a snap chat post and through reposting the party got our of control.    What is particularly disappointing is the student is a foster child to a family on our street.   It’s so east to place blame and not be supportive.   Hopefully everything will turn out okay.  No one was hurt and the damage is overall minimal.  

The Big Boy Update:  My son said several things in the car tonight, following it with, “you can learn from TV”.

The Tiny Girl Chronicles:  My daughter had a braille book sent home by Dolly Parton.   She heard from us she was a singer.   Now every time we’re in the car and it’s my daughter’s turn to pick the song, she asks for music by Dolly Parton.   That means it’s Country Music Central in our car fifty percent of the time now.

On For Monday

Thanks to our surgeon here we are now scheduled for surgery in Detroit on Monday.  Things aren't great, but we're hoping it will be something simple and fixable like low pressure.  Hoping.   Hoping.

My daughter, as always, has a happy attitude even with her remaining sight dwindling.   My husband is keeping us positive and my son, for all of his six years, is supportive.   I can't ask for more in a family.

The Big Boy Update:  My son told my husband he was mad he wasn't having a parry for his birthday.  Dad told him he could plan his birthday party and that he wanted pizza, a Costco cake and a new pinball machine.  My son replied, "too expensive"

The Tiny Girl Chronicles:   My daughter can still see colors.  I watched her music lesson today and I saw what Chelsea had seen from the prior week.   Although even Chelsea aggres, something is worsening.

Date Moved Up

My daughter’s next EUA and surgery is scheduled for June 5th with her retina surgeon, Dr. Trese, in Detroit.   Since the cataract surgery things have gone up and down, but more recently only in a downward direction.   We’re not sure what’s happening, but something isn’t functioning in her eye.

Hopefully there isn’t permanent damage being done because there just isn’t a lot of vision left in the eye—her only useful eye.    We went back to the play therapist today and she agreed, something is amiss.   Her teacher at school today said they’re not sure she saw anything at all during school.

I did a test after school, annoying my daughter in the process, and found out she can still see some colors and even saw a red square, but what is the same and what’s been lost?  We don’t know.   I messaged our surgeon here and asked her advice and she suggested we see if we could get in earlier than June 5th with Dr. Trese.  

Unbelievably with the crazy busy schedule he has (I’ve heard incidental stories from other people) he said to have her come up for Monday.    So tomorrow I’m calling the scheduler first thing and my husband is making travel arrangements.    Hopefully we’ll have some more clarity then on what’s happening in her left eye.

The Big Boy Update:  My son told my husband tonight that art is something that makes you feel good that spreads the feeling to others.   We were thinking we had a very eloquent six-year-old until he informed us he learned that from Paw Patrol.

The Tiny Girl Chronicles:   My daughter didn’t want to tell me what she could and couldn’t see today.   She lies, tells us she can see more than she can, because she wants to make us happy.   But she could tell me a lemon was yellow, a tomato was orange and the Tupperware container was red and even offered that it was square.    So she can see something.   But it seems like a lot less than she could see when she first opened her eyes after the cataract surgery.

Busted Lip

My daughter’s vision has been abysmal for the last several days.   We don’t know what’s going on but we’re concerned.   She’s upset about it, we can tell and we can also tell from her behavior that she’s not seeing much at all in comparison to what she could see relatively recently.

Here are a few examples: She wanted to play with the tumbling mat this afternoon.  One side is dark blue and one side is red.   She couldn’t tell if the side she’d put up was blue or red.    Tonight my son wanted to play a team board game.   I could tell she wouldn’t be able to see much, but we let her pick the spot in their bedroom with the best light for her, which turned out to be the closet.   She tried twice to see the cards to turn them over (she can’t tell what’s on the card, but typically she can see where the cards are).   She gave up after two tries, put her head down and said, “I don’t think I want to play”.  I rubbed her back while my son rigged the game so we would win and then I put them to bed.

They weren’t in bed for more than a few minutes when I heard her screaming upstairs.   It was one of those injury versus insult screams so I ran up the stairs to see what had happened.   She had gone to get a stuffed animal from their play room and couldn’t see the bed—the huge bunk bed—and had busted her lips as she got back in.

An ice pack and a paper towel fixed the pain and the bleeding, but her words of, “I’ve already hurt myself twice today” from earlier in the day haunted me.    We’re hoping for some more information hopefully when we see her retina surgeon in Detroit on June 5th, but for now that seems like a long, long time in the future.

The Big Boy Update:  My son was telling me about how all the girls wanted to marry him.   When I asked which girls in his class he was talking about he said, “Madison is my girlfriend”.   I thought this was sweet because our neighbor’s daughter, Madison, is a very good friend to them.   When I said something he immediately corrected me, telling me he was talking about Madison from New Jersey (his nineteen-year-old cousin’s girlfriend).   I told him he’d better check with his cousin Kyle to make sure it was okay for Madison to be his girlfriend.   His love for Madison has spanned over a year now.   I hope she doesn’t mind a long distance relationship—with a kindergartener.

The Tiny Girl Chronicles:  My daughter struggles with frustration.  One thing they’re not allowed to do is kick the back of the seat in front of them.   This morning it was obvious something was bothering her.   As she was kicking the seat back she said, “my toes aren’t listening to me”.

Tub Cups

We have a drawer in the master bathroom filled with tub toys for the children.   Since they were very small we’ve given them a bath in the large garden tub there.   They love bath time—once they’re in the tub.   Prior to getting in the bath you’d think we were cruel, heartless parents for making them get clean.   They complaints are turning into lies now, such as saying the sitter last night gave them a bath last night, only to be recanted once we say we’ll text the sitter to confirm.   But once in the warm water, it’s getting them out that becomes the problem.

I’ve been on a hunt for good bath toys for years.   The contents of the drawer has changed over the years but toys always facilitate a fun bath experience—until lately.   Now that the children are older the games are more imaginative and verbal, with one exception—cups.   They both want a cup to pour water with.   It might be water on each other’s head, water on their toes, collect hot or cold water from the tap or, and this is a favorite, suctioning onto their knees.   Who would have thought two cups could a happy bath time make.

There has been another change, and that’s due to my daughter’s new haircut.  Her shorter hair with bangs means we don’t have to dry it and she doesn’t have to do bows or ties to keep it out of her eyes.   She can get ready for bed after exiting the tub in almost the same amount of time as her brother, which is nothing short of sheer happiness for her.

Some day we’ll move bath (or shower) time up to their bedroom, but for now it’s still a nice way to end the night before going upstairs for stories (currently the third Harry Potter book or the latest braille book sent home) before lights out.

The Big Boy Update:  My son brought home this math problem today:

I don’t know when I was dividing into a four digit number with remainder as a child but I can tell you it sure as heck wasn’t in kindergarten.  

The Tiny Girl Chronicles:  Today was a bad vision day.   I was hoping we were over the big vision fluctuations, but apparently we’re not.   Her VI teacher and I talked briefly after her Orientation and Mobility session at the rose garden today and she said, “it’s worrisome” because my daughter wasn’t able to see things (big and close up things) she could see last week.   Hopefully tomorrow her vision will be improved.   But then again, that’s my hope every day.

Strength, Hope & Caring

Way back at the beginning during the time my daughter lost her sight to the original insult to which we still have no diagnosis, we were taken care of by an impressive team of doctors, surgeons, nurses, fellows and interns at Duke Hospital.  It was a very scary time during which my daughter was admitted to Duke for three days for an expedited workup to try and figure out what could possibly happened to caused the inflammation and subsequent damage to her eyes.  

During that time I sat in a reclining chair with my laptop and took notes as doctor after doctor came in to see my daughter.   Blood, spinal fluid and urine was taken.   Scans were done, evaluations were performed and consultations across doctors and fields were had to try and figure out not only what had happened to my daughter but if it could be stopped and her vision restored.

As I took notes I documented everyone who worked with us and tried to help.   Everyone was so very kind and each medical practitioner who came to see us genuinely wanted to help us.   We were overcome with the kindness and caring we received from everyone at Duke.   Later on, I asked a friend who worked at Duke if there was a place I could send something in writing to let Duke know how grateful and impressed we were for the care we received.

I say a long time ago because I forgot about it and I thought nothing came of it—and then I got a call on Friday.   It was from someone at Duke who wanted to let me know they had gotten my story and it the cross-discipline team who worked with us had won an award as a result.   The award is the Strength, Hope and Caring award, given once per month at Duke.   Apparently our story was so moving and involved so many doctors that it had been selected to win the yearly award.  

I was a bit dumbfounded.   I was so happy for the doctors because they truly did demonstrate all the characteristics of the award name.   I was asked if I could come in for a video shoot to discuss our experience.   The video would be posted on their site and a clip of it would be shown at the Strength, Hope and Caring gala later this month.  

Today I went in and met with their video team, who had set up just for me, and did a half-hour interview with them.   The interviewer had a son who has had multiple pacemakers throughout his life and the videographer had a son who had to have open heard surgery eleven hours after he was born.   We shared stories and all understood what it was like to be on the receiving end of excellent medical care at Duke.

I’ll get a link to the video online when it’s complied.   They assure me they’ll cut out all the parts where I stumbled over my words or looked at the camera.   For me, I’m happy the team at Duke was recognized for the above and beyond care my daughter received.   They certainly deserve it in my opinion.

The Big Boy Update:  My son has a stuffed animal he nicknamed, “Sloppy Dog”.  Sloppy dog has been all about the house, but one place he always returns to is my son’s bed, where my son is happy to have him, right by his head, every night.

The Tiny Girl Chronicles:  My daughter’s light-sensitivity changes throughout the day and across days.   In the mornings it’s particularly acute but sometimes by afternoon she doesn’t even want to wear her Fitover sunglasses that “fit over” her prescription lenses.

On The Loose

It’s Mother’s Day, a day we typically don’t heavily celebrate, but it is a fun thing for the children as they’ve been preparing something at school to bring home.   They also were excited because they were doing something special for me that was to be a complete surprise this morning, say around breakfast time, and could I please not come out of the bedroom until they told me it was ready?

My daughter came into the room to give me updates on how many of the “things” being prepared for the surprise were ready and how much longer I needed to wait.   I shouted out at one point to my husband saying, “can you turn the coffee machine on?” and eventually all of the surprises were ready and we had a very nice breakfast together as a family—even though my son had gotten up early and had poptarts he told us later.

My husband had a rare chance to go on a motorcycle ride with some friends so he was off for several hours, stopping into the office to pick up real estate checks, always the multi-tasker.   There was laundry to fold, dishes to put up, school lunches to be made and of course Sunday snacks and meals to be had.  I had some willing helpers, which was nice, until they got tired or bored or both.   But help is a good thing.

The children each made me something and gave it to me.   My daughter’s was a collage of flower petals we’ve hung on the refrigerator.   My son, who is a year older, wrote a page at school listing adjectives he thought described me.   Here’s what he brought home, and before you try and translate his still immature handwriting, we figured it out with his help.

First, no idea what the picture is about.   I think he forgot what he was drawing because it was a few days ago and he drew the picture the day before that.   The main part says, “fancy loose beautiful funny cozy silly cool heavy slippery sharp mom”.   We saw his teacher on Friday and she told us it was coming and wanted to let us know that when my son wrote ‘loose’ she wanted to let us know he told her, “as in ‘on the loose’”.  When I was putting my son to bed I asked him about the adjectives and he told me when he said, ‘cool’ he meant as in, “brrrr, cold”.  That still leaves no explanation for slippery or heavy though…

The Big Boy Update:  My mother-in-law was showing me a video from January when they were watching the children.  She had been feeding them lunch and my son was eating something looking like chicken noodle soup.   She asked him what it was he was eating and got back, “it’s so good I forgot.”

The Tiny Girl Chronicles:  My daughter is congested with a head cold.   Today she told me, “I think my nose is connected to my mouth.”  I asked her why she thought that and she replied, “because I just got a little mucous in my mouth from my nose.”

About That Pressure

I had two people contact me asking, “hey, weren’t you trying to find out about eye pressure yesterday?   Wasn’t there an appointment?  We didn’t hear on the blog.”   So oops, yeah, I didn’t write about it.   It was one of those complicated days in which <spoiler alert> we learned very little about my daughter’s vision while having an interesting day in another direction with bring your parents to school day.   Thanks for the reminder that I’m not (as I like to envision) writing only to myself here and that people sometimes tune in and check up on us.

My daughter did have an appointment with her pediatric ophthalmologist yesterday and we did learn some things but on the whole it was more of a, “let’s wait and see” kind of appointment in the end.   What we had done since learning from our play therapist on Thursday was to leave my daughter alone about anything vision-related.   This means giving her help always in finding things by describing where something is, not saying, “can you see the fork, it’s near you”.   It means taking as much stress off her as possible when it comes to her vision.  

I saw her teachers on Friday morning and they understood, said it made sense and will move forward with the same plan.    Then, after visiting my daughter in her classroom the first thing in the morning and seeing her show us her work, we dosed her with a good amount of Benadryl so she’d be more relaxed for the eye appointment.  

We came back an hour-and-a-half later to get her and she was in a calm but good mood.   She was happy and glad to see the doctor but as soon as discussion about getting a pressure reading (which doesn’t touch the eye and isn’t painful) the screaming and crying began.   How Dr. Prakalapakorn got even a reasonable look into her eyes is beyond me, but lights completely off and my daughter playing with a light-up spinning toy and her doctor could apparently see something, enough to say her eye was in a calm, clear state.

We talked to her about the possibility my daughter was seeing some, but was under a large amount of stress to prove she could see and had potentially shut down.  Her doctor didn’t think her pressure had dropped dramatically from a tactile touch but thought an ultrasound might help (if my daughter would tolerate it).   Tolerate it was the question.  

It took two doctors and some yelling from my daughter and some cajoling from us with the promise of a lollipop and the ultrasound was completed.   It’s hard to tell—trust me, I saw the ultrasound, it was hard to tell anything.   But there did seem to be a layer of something that wasn’t dense enough to be retina.   The thought is it’s likely the injected steroid they put into her eye that hasn’t permeated out yet.   It may have settled and is obstructing some of her vision.   We’ll know more when we see Dr. Trese on June 6th.

Today was good and while my daughter will run into things as large as a car, she seems to be able to do well with other things.   My mother suggested she look at herself in the mirror to see her new haircut.   She hadn’t done this before and while we don’t know what she could see, she was happy with what she saw.

The Big Boy Update:  My son to dad, “we need to replace mommy.”  Dad, “why?”  My son, “because she talks too much and it wastes time.”

The Tiny Girl Chronicles:  While swinging on the swings together my daughter told me, “I farted sixty times yesterday.”

Bring Your Parents to School

Today was one of the three days in the school year in which the children welcome their parents into the classroom to show them what they’ve been working on.   You never really know what your child will show you and since you’re their guest, the request from the teachers is to let the child lead.

That advice on leading is part out of respect for the child’s independence, but it’s also because the parent has no idea what the child is suppose to do with any of the “work” they might bring to show you.   I’ve said it before and I’ll say it again, Montessori is different in many ways from typical materials you might see in a kindergarten class.  It might look like nothing at all, but there is a specific process the child knows how to do that works on something like fine motor skills, pincer grasp, tactile recognition, phonetic sounds, etc.

For example, today I saw two four-year-olds working together.   One child put on a blindfold and waited for a second child to put three equal-sized blocks in front of him.   His job was to determine which of the two blocks were made of the same material.   It might be by weight or texture or material warmth.   The two selected blocks were handed back to the first child to put aside.   This process was repeated until all the blocks were paired.   When that was completed the mask came off and the child got to see how many matches he got right.   Then they swapped roles and played the game again.

Parents tend to want to say things like, “and does this go here?” or “fourteen is before fifteen” or other phrases and actions that tend to lead the child through what should be a demonstration of their knowledge and skills.    But I’m soapboxing and I’ll get off now.    Suffice it to say, it is one of the hardest things to do to not say anything or direct your child.   Sometimes it’s interesting to find out what they do know how to do, especially if you didn’t expect them to know something they’re proficient in by the time you see them at school.

We saw my daughter this morning and she took us from work to work to work, showing us math by counting in fives up to 112, after which she was suddenly done.  She did some fishing work that turned into a cake backing (imaginative) and then she wanted to do some drawing with a chalk board.    She worked for a while on this, including a tree on the left, sunflower in the middle, sun and ladybug she had to erase twice before she got it the way she wanted it.   She put her name and “mom” at the top.

My son had us visit his class this afternoon as he’s in the next year up class and has more advanced work.   I was very impressed with how his reading has progressed as well as his handwriting.   He was also doing more complicated math work, making leaps without counting such as how many times four will go into twelve after figuring out three goes into twelve four times.   He was very happy to have us visit him, being most proud I think of his pencil which he’d nicknamed, “Pennsylvania”.

The Big Boy Update:   My son did lots of work at bring your parents to school day today.   The last thing he did was to get a very ornately decorated mug, a piece of paper and a pencil.   He would rotate the mug around to find the kanji characters on it (which were tiny) and then copy them onto his paper.   This might sound strange, but the hand-eye coordination and the copying of complex characters is something that wouldn’t shock me when it comes to Montessori education.   However when I asked his teacher smiled quietly to me and said, “I have no idea what he’s doing.”   

The Tiny Girl Chronicles:  My daughter was working with some small plastic insect characters today.    There was a caterpillar, a butterfly, a centipede, a grasshopper and a lady bug.   When she gave my husband the caterpillar and she took the butterfly he said, “the caterpillar turns into a butterfly” which my daughter immediately corrected, saying, “no, not yet, it takes a month.”

Bad, Worse or Not As Bad As It Seems?

We are still flummoxed with my daughter’s vision.   Her teacher has emailed and spoken with us, saying that my daughter’s frustration with her vision has caused her to be unfriendly to her peers now.   The teachers ask if they can help but they’re not sure what to do and my daughter isn’t telling them.   Is she scared?  Is she worried?  We can’t tell.   She won’t tell us.

Her VI teacher said the level of non-compliance or even interest in doing braille work is so high that she’s backing off from educational goals and just trying to play and have fun so my daughter doesn’t have a bad association with braille.  

We’re seeing the frustration manifested in anger and defiance here too—along with the reduced mobility and functionality with her current vision.   Today on the ride to school I asked if her vision was different or if she couldn’t open her eyes due to brightness.   I was told I wasn’t getting an answer with, “I’m not telling.”   When I pressed her hard enough I got that everything still looked the same and her vision was good and she could see things.   We know this isn’t true because she will lie and say she sees something like, “I can see the house” when we’re miles away.

So we had an emergency session with her play therapist today.   Dhruti videoed a lot of the session and shared the video with me.   As we whispered afterwards she said, “I don’t think she’s lost more vision.  I think she’s under so much pressure from everyone around her to see better it’s making things worse.  Just stop asking and talking about it.”  

Could we be making it worse for her?   We’ve dropped any testing questions or direct questions and are telling her everything she needs to know as though she’s completely unable to see such as, “the fork is to the left of your plate, the chicken is in the front and the corn is in the back of the plate.  Your milk is on the right and I’m handing you your napkin now.”    Dhruti says she’s holding her eyes open in the sessions with her.

But we’re seeing closed eyes sometimes, watching her pull down the corners of her eyes as though that might make them see better and behavior such as walking straight into a black fence which she always saw among many other large obstacles she just isn’t noticing.   She’s a hazard to herself right now and sometimes we’re forgetful she may not have the peripheral and form vision she had some months ago.

Then this afternoon we had our music therapist over who said similar things as Dhruti, saying with the blinds closed, my daughter could discern all the transparent colored scarves on the floor—something she couldn’t do before the cataract surgery.

So is it brightness?  Is it a drop in pressure?  Is it us putting pressure on her to tell us what she can and can’t see?  Or is it something else?  Tomorrow we see her ophthalmologist/surgeon and will hopefully find out a little more.

The Big Boy Update:  Keira, one of our children’s best friends, came into the house to tell me there was a talking tree outside in the front.   I came out and the tree looked normal—until I heard it talk and saw my son so high in it I didn’t even realize he was there.  I wanted to tell him it wasn’t safe and to come down, but my parents let me climb in all sorts of trees when I was young (trust me, they have stories they can tell you).   I broke an arm once but for the most part I didn’t want to get hurt so I was reasonably careful.   I said good job and went back inside and tried not to look as he climbed down.

The Tiny Girl Chronicles:  Chelsea, our music therapist, said my daughter is getting into more visual-focused things since the surgery.  Today she wanted to play the keyboard and would ask Chelsea, “guess what color this song is?”

The Hair Cut

The Tiny Girl Haircut and Big Boy Comment Reaction:
My daughter is having a hard time with her vision.   Something is going on.   We’re hoping it’s just pressure dropping in her eyes, but if it is, it’s happened fast and the change in her vision is dramatic—she is seeing less and less every day and it’s scary.    She’s not coping well, something we can tell in her reactions to things happening around her.   She’s defiant, won’t listen and is easily upset.    It’s not  easy to get information out of her but she’s seeing her play therapist tomorrow, which I am hopeful will give us some insight and even more than that, help center her.

Today we decided to cut her hair.   For the longest time I’ve wanted my daughter to have long hair.   It’s been a tough path though as her hair is fine and breaks easily.   We have to put it up in bows or it’s in her face (and in her food).   It’s a mess to dry and maintain but until today we’ve kept it long and managed.

After school my daughter knew, and was excited about getting her hair cut.   We were going to have her hair styled like her next door neighbor and good friend, Madison, in a short bob with bangs.   I was wary of bangs because the only other time we did bangs was when she was put on IV steroids and immunosuppressants and she bloated up like an unrecognizable version of herself.   But it was time; today was the day.  

This much was cut off:

My daughter was faring well, holding still and seemed fairly into the cut.   Then her brother came into the salon with dad and a smoothie for her.   He immediately said, “you look funny!”   I didn’t think it was a nice comment but I didn’t know how much it hurt my daughter until I saw tears rolling down her face, silently, as she sat there.   I asked her if she was crying because of what her brother said and she replied, “maybe”.

I pulled him aside and we had a conversation and at the end of the haircut when my daughter put her glasses back on he said, “you look good now with your glasses on.”  I hope it helped, but I don’t know.   My daughter suffers silently most of the time; this was one of the only times I’ve ever seen her show emotional pain from a direct comment.

On the ride home I was talking about how easy it would be to dry her hair and how she didn’t have to have bows any more and, hey, we could let it dry without the hairdryer some nights and let it go curly, to which she said, “don’t ever say that again.”   I don’t know how she’s feeling, but she’s not confident about her hair cut yet (it looks great on her).

One other thing happened that shows you how she sees the world differently—my son was saying she and Madison looked the same now and since she wore Madison’s handed down clothes maybe people couldn’t tell them apart.   My daughter replied, “people won’t confuse us because no one has the same voice as me.”

Tomorrow at school I have a feeling she’ll get a lot of positive comments from teachers and friends.   Hopefully it will help improve her mental image of herself now.   We saw several friends in the back yard also tonight and they thought her hair cut looked great on her.   It does, she looks quite cute with her new short hair.

When Pictures Make You Laugh

My son has a journal at school.   Each day he writes the date and day in cursive, fully written out, and then something else about the day—if he has any hand strength left.    Apparently he can also draw a picture if he’s in the mood and there’s enough time.   Every few weeks he brings home his journal.   Sometimes he wants to tell us about the entries, sometimes he has little to no interest.   Tonight he was all about his journal.

There were some good pictures, like the one that looked like intense blue scribble until he explained it was the rain that was coming down on the school and, upon closer inspection, we could see a dark outline of a building under all the dense blue lines.

Then there was a picture that had people in a house.   Here’s the picture:

I asked him who the people were.   He said, “the one on the left is daddy.   The one on the right is you, mommy, brushing your hair.    I’m in the middle playing video games.”   I asked him what that pink, orange and green was at the lower areas near dad.   He said, “that’s my sister when she was sick, lying on the floor with her blanket and that’s gatorade and her water bottle beside her.”  

Folks, that is totally our family.

The Big Boy Update:  My son asked me, “why aren’t our bodies invincible?”   If you think about it, that’s a pretty discouraging conversation to have with a six-year-old, although I think he took the reality check fairly well.

The Tiny Girl Chronicles:  My daughter got a fortune cookie two days ago.   Her fortune was pretty much spot on, “your cheerful outlook is one of your assets.”

Swingset

We have a swing set.   Actually, I don’t think that’s what it’s called anymore.   There is a ladder, a slide, a rock wall, picnic table, sand pit and three swing spots.   My children and the neighbor’s children like to spend time on and around the structure.   It’s fun for me too as I like to swing on the swings—I’ve always loved swinging.

One of the things that keeps things interesting and exciting is switching out the attachments for the three swing spots.   We have a baby swing (which is rarely used) two saddle swings, a plank swing, two net swings. a rope ladder, a trapeze and a large four person canvas swing.   Moving the various options around and swapping them out seems to revitalize interest in the play set and since I like my children outside, interacting with their peers, I swap things out a lot.  

Today after school my daughter wanted to go to Wood Play to play on their play structures.   She doesn’t really understand it’s a store and not just another fun playground for her entertainment but since I was interested in the possibility of more options I told her we’d go after snack.  

We got there and she went (with guided help) to the trampoline.   This trampoline is one of the new kinds with the safety net all the way around.   I put her in and then took advantage of one of the things you can easily do with a blind child—I zipped her in and walked inside to talk to the sales person.

Does that sound mean?   She was safe in the trampoline and I knew she wouldn’t be able to see the zipper to get herself out quickly if she got bored (she didn’t) so I had a few minutes.    Ultimately we decided there weren’t any new options we didn’t already have so we headed home, after we’d tested out all the slides in the whole store.   My daughter had a great time and I still don’t think she understands we were at a store and the trip wasn’t entirely for her entertainment.

The Big Boy Update:  My son told us yesterday, “I know what I want to be for Halloween; I want to be the Stay Puft Marshmallow Man.”

The Tiny Girl Chronicles:  My daughter is obsessed with spelling her name.   She does it all the time. Of late it’s cursive and backwards.   She likes to spell it out with her shoes in the dirt and with her fingers in the grass.   She also likes to spell ‘rooster’.   I’m not sure why she likes that word so much though.

If Eyes Could Talk

My daughter’s vision is so confusing.   She doesn’t let us know what she can and can’t see on a daily, or in some cases even hourly basis.   Maybe that’s for the best because if she told us how it was fluctuating (negatively) I might not be able to maintain my calm grip on sanity.  The space between what you might imagine her vision is and what her vision actually is has become a deep, dark hole.   We just don’t know.

She should be seeing better, shows signs of seeing better and then, today, had all appearances of seeing far less than she was able to before.   She couldn’t see the car seat in the car or the seat in the second row.    She was using her hands instead of her eyes to find things.    Is it worse?  Or was she keeping her eyes closed some of the time because we forgot her sunglasses and she was blinded by the light?   I don’t know.  We couldn’t tell.  She didn’t say.

On June 6th my daughter will have another surgery, this time on her right eye, to open up the scar tissue preventing her from (potentially) seeing.   Will she be able to see anything after that?   We don’t know.   My biggest hope is for an accurate refraction while she’s under anesthesia so we can get her appropriate lenses in her glasses and hopefully so she’ll be able to see things a little more clearly.

The Big Boy Update:  My son did not want to go outside today.   He’d had a bit too much digital time so given the two options of spending time alone in his room or going outside, he opted for outside.   Only he didn’t really want to be there.   He stayed on the front porch and explained how he hated me and wanted to kill me.   I figured this meant he was hungry.   A granola bar and some orange juice and he happily ran off to play with the other children playing outside.

The Tiny Girl Chronicles: My daughter prefers the +17 lenses.   I’ve offered the more powerful. +22 glasses multiple times but she always refuses.   Tonight after her bath I put the +22 glasses on without telling her, wondering if she could see better with them.   That test lasted only a few minutes with her becoming frustrated, saying she couldn’t see.    So good news in some part is her prescription is likely less than +22.

The Laws of Physics

Sometimes children don’t understand things.   As adults we can understand their confusion and frustration, for example when they don’t see why they can’t have every single toy they want.   It’s our job as parents to help them navigate through a realistic world and be there for them when reality isn’t what they envisioned it to be.

My children are typically hungry at a point suddenly and without notice.   At these time it is imperative (to them) that hot, delicious, made to order food be delivered to them immediately.    Dealing with meal availability and readiness is something that continues to crop up.

I walked into the kitchen tonight where I saw my son at his dinner place, clearly unhappy and my husband at the stove, quietly working on making dinner.   As I walked in I heard my husband sad, “what did we say about boiling pasta?” to my son.   When all he got was a sullen, quiet response, dad followed up with, “that it has to obey the laws of physics.   And that means dinner won’t be ready for another twelve minutes.”

The Big Boy Update:  My son was mad.   At the point of writing this I don’t even remember what he was upset about but I do remember him saying to me in his hateful voice, “you’re gonna pay for that!”

The Tiny Girl Chronicles:  My daughter accepts help readily.   She almost always accepts your hand when you hold it out to her for guidance.   Lately she’s declined a few times.   I’d like to hope it’s due to her change in vision, but I might just be wishful thinking there.

The White Scarf

There is an ongoing debate, discussion, perhaps a wondering about my daughter’s vision.   Is it improved?  Has it been dramatically changed with the cataract removal for the worse?   It’s infernally hard to find out from my daughter because she doesn’t tell us directly.   We have to go with observational evidence and feedback from the experts who can better interpret my daughter’s actions.

The Vision Impairment teacher has been concerned.  She’s said not only is my daughter’s vision worse, she’s highly frustrated by it and has broken down in tears and been resistant to working at school as a result.

The Orientation and Mobility teacher has said the opposite, indicating there has been an improvement in navigational capabilities and possibly more sighted input, even given the very incorrect sunglasses prescription we have at this time.

We got lucky and Dhruti, our play therapist, had a session this afternoon.  I’ll find out what she thinks when we have a chance to talk on my daughter’s level of frustration in comparison to possible improvement.    We also had Chelsea, our music therapist today and she told a different story altogether.

They’ve been playing a scarf game for months.   Today my daughter said, “I didn’t know we had a brown scarf!”   Then later she said, “when did you get a white scarf?”   As you might guess, there were no new scarves, but their colors were suddenly brighter and more discernible.   Chelsea said from her perspective she’s seeing all kinds of new things and her spatial orientation is much improved.

So hopefully some things are better, even though we’re still going through an adjustment period and in need of a correct refraction and glasses to match.

The Big Boy Update:  My son went off to overnight camp in the large forest beside our neighborhood this afternoon.   It’s something the kindergarten-aged children do every year.   Initially my son wasn’t that excited to go but after a conversation with dad last night, not only was he okay about going, he was calmly excited about it.    As he was about to leave he went over to his sister with some advice for while he was gone,  saying, “be a brave girl, Reese.”

The Tiny Girl Chronicles:  In a conversation about balloons today my daughter inquired, “is it called floatium that goes up in balloons?”  I said it was helium and it went up because it was lighter than air.   She asked me next if there was another one that made the balloons go down.   Yes, I said there were other gases that were heavier than air but we didn’t typically put them in balloons because it wasn’t as much fun.  

Night Visitors

We’ve been having visitors at night lately.   Sometimes it happens early, sometimes much later and on occasion just before the sun comes up.   I’ll be asleep or nearly so when I hear a pitter patter or a thud thud or a clump clump as one of the children comes from their shared room upstairs into our bedroom.

What happens then, depending on the child and the situation is an approach to either my side or dad’s side of the bed with a plaintive or quiet or scared calling out of our name.   After we answer we find out the nature of the visitor.

Last night I first had my son who explained that he’d had a nightmare.   He didn’t want to talk about what, just stay in our bed for five minutes with his head on the “baby pillow” I keep for my neck.   After that he calmly walked himself back upstairs but left with a warning he might be back if the nightmare returned.

Next my daughter came down upset because she’d lost her pillow.   It was no where at all, simply gone.   I thought she meant her new sequin pillow Mimi had gotten for her but when it was clear I couldn’t easily send her back upstairs without help I walked up with her.   As we ascended I began to understand it wasn’t another pillow, it was her main pillow.   When we got to her bed she found her main pillow exactly where it always is, unmoved.    She quickly pulled the comforter over her and curled up in a ball, not even bothering to answer me when I said I’d see her in the morning.

Both of those happened before my husband came upstairs from watching a movie.   When he did come to bed he put his ice cream bowl in the sink and turned off the lights.   Or maybe he did something else.  I don’t know what he did, but it must have made noice because as soon as he’d settled into bed my daughter was back downstairs, saying she’d heard a monster.

This was unusual because first of all, they don’t typically wake to sounds we make and second, she went straight to monster in the house.   Dad explained it was him and walked her back upstairs.  After that we all were able to sleep through the rest of the night uninterrupted.

The Big Boy Update:  My son was quite unhappy I wasn’t pulling his fried shrimp out of the oven when the alarm went of signaling time was up.   I knew he was hungry but I told him if I didn’t get the oven mitts to pull out the shrimp, my hands would be sizzling like the food on the tray and I’d be a very unhappy mother with burned hands.

The Tiny Girl Chronicles:  My daughter asked my husband the other school morning when she came downstairs to our bedroom, “dad, are you going to get up in time for bacon?”  

Trampoline Mud Pie

The Big Boy Tiny Girl Mess In The Back Yard Story of the Day:
It was after dinner, it was during that time where the long rays of sunlight make everyone look like they’re taller and than their childhood years and hides the dirt that seems to regularly cover all the children that live in this house.   I looked outside to see six children in the backyard with buckets, small plastic shovels, some bulbs they’d dug up or town out and a lot of mud.    Oh, and the mini trampoline.

I’m not sure what their plan was, because from the gesticulations there were differing opinions, but something important was going down—this much was evident from the amount of pine straw being piled on top of the mud on top of the sand on top of the trampoline they’d drug across the yard.

I ventured outside to see if I could make sense of things but when I got close, I decided it was more fun to just let them have at it because fun is a commodity we lose sight of as we get older.  

A short while later my husband came out on the deck and decided remote hand and feet washings were due using the hose and spray nozzle one floor above the children.   This, it turns out wasn’t a punishment but a fun end to the evening’s play.

Slime Bath

My children love Five Below.   If you’re familiar with The Dollar Store then you know the concept.   Five Below is a store where items are five dollars or less, typically in increments of a dollar.   When the children have accomplished something like filling a chore chart or completing something important we’ll take them to the store and let them pick out anything they like, knowing the price point won’t be any higher than five dollars.

My mother and father are returning to their mountain home and they wanted to get the children something as a going away present.   We had talked about the mall, but since there is a much higher potential cost with things they might select there, coupled with the fact my children had been requesting a trip to the dollar store lately, I suggested we go there with my mother after school today.

There were no complaints from the youth in the car after carpool pickup.  My mother had never been to Five Below—a colorful cacophony of products and pop culture.   I think we could have spent hours there, the children slowly wasting away into starvation, not caring, because they were touching and looking at exciting products, many of which they wanted to put into the cart and take home.

They each selected something and I picked out a Slime Bath product which we added to their bath water tonight.   Imagine a bath turned green and slimy and you have an idea what we had going.   Imagine squeals and laughs.   Imagine a mess.   We had all of that and then some.

Thanks Mimi and Gramps for the fun presents.   Thanks for the slime.   We’re working on cleaning up the mess…

The Big Boy Update:  On the way to school my son yelled out, “One Two Three, Quiet Game!”  Then he made a correction saying, “hold on, I’m locating a flying horse”.  

The Tiny Girl Chronicles:  I was drying my daughter’s hair when she reached out on the counter and felt my beer bottle.   She was interested so I asked her if she wanted to try it.   She said yes, but only a tiny bit please.   This particular beer was quite bitter so I didn’t expect her to like it but I poured it into a glass and she tried it.   Her response?  “Ew, I don’t want to waste your beer mom, you have the rest.”

The Last Supper

It’s that time of year again.   My parents relocate here for the winter months but come May 1st they return to their home in the mountains.   It always seems like a short four months, but we’re glad they’re close for the months they’re here.   My father dubber our dinner tonight, “the last supper” but we hope they’ll have a reason to come visit soon.   We’ll have to plan a trip to visit them as well; my children love to spend time in the mountains with them.

The rest of tonight’s post is some things my children have said that made us laugh…

The Big Boy Update:
Getting Lost With Papa:  My father-in-law is excellent at “getting lost”.  I’m not certain he’s truly lost, he’s just not in a hurry to go where the rest of us are heading.   While we were in Palm Springs my son was with him and when we were eventually reunited my son said, “It’s all Papa’s fault because he gave in when I wanted to walk.”

Papa’s Children:  My son was talking to my brother-in-law at the pool about Nana and Papa and demonstrated he had a pretty spot-on understanding of family relations when he said, “Papa married someone and had three children.  Then he de-married her.   Then he married Nana and had dad.”

Driving a Tesla:  Again, my son grasps important concepts of the world by stating on the way to school, “driving looks pretty easy if you have a Tesla.   All you need to know how to do is read.”

The Tiny Girl Chronicles:  
Teacher Workday:  My daughter explained to my mother tonight, “Friday is a teacher workday.  We don’t go to school because the teachers have to all talk to each other.”

You’ll be dead:  My daughter was very insightful when talking to my mother, explaining, “when I get to adult land you’ll be dead.”   Then she thoughtfully added, “When I get to adult land I want to have a baby so I’ll have someone to take care of.”

New Lucy:  My children aren’t completely able to distinguish the difference between flora and fauna at this age.   My daughter knows we buried our dog’s ashes under a tree we planted to remember her by.   My daughter explained, “we planted the ashes and we’re going to grow a new Lucy.”