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.