Tuesday, August 7, 2018

All About Her

My daughter is having a hard time lately.   She’s blind, but she’s going more blind.  She’s losing the very little vision she has left we’re worried.   She’s lost it, but can it come back?  That part we don’t know about.   We’re doing enough drops to drown her little eyes with different purposes to help keep her eyes as stable as possible.    But can they heal at all from the recent edema?   What is gone for good and what may return?

To say we’re understanding of what she’s going through isn’t a straightforward thing.   As parents, we hate this for her.   It’s heartbreaking for any parent to think of their child going through a medical trauma that goes on and on and has permanent, lasting damage on a child’s life.   But that doesn’t mean we have to parent her as though she’s broken.   That wouldn’t help her, it would handicap.  

I didn’t think much of how we were treating our daughter until I got to know her braillest last year.   As an educator, she has worked with many children in her career.   She made me feel good about how we were treating our daughter—as a capable person.   Sure, we help her when she needed it.   But we try to teach her to be independent and help her to learn, not just do things for her.

But things change when my daughter’s vision—the vision level she knows and has adapted to—suddenly changes for the worse.   She gets lost.   She’s scared.   And she needs more help.   My daughter isn’t a frail little waif wanting to be helped though.   She’s feisty.   And she isn’t an easy one to help.  

Lately, it seems the more vision she loses, the more everything is about her.   She’s not easy to deal with a lot of the time.    My husband and I don’t understand it.   But we have expert help and are going to get some guidance from her therapist.   Thank goodness for Dhruti.   I’ll have to let you know what she says, because things keep getting more and more interesting with my daughter.

The Big Boy Update:  I just found a bookmark my son made over the winter break.   It made me sad reading what he wrote on it but happy in a way too because he’s made so much progress interacting with other children socially.   He wrote, “My New Year’s resolution for 2018 is to ask friends to let me play with them.”

The Tiny Girl Chronicles:  My daughter had a very long ride to and from school last year.   This year so far she is the only student in her van.   Both to and from school.   She can get there and back faster in the van than she could with us because the van (or “taxi”) doesn’t have to wait in the carpool line.   I suspect there will be more students added to her route soon enough.   For now, she’s enjoying riding with Ms. Williams though.

Monday, August 6, 2018

The Dress

I went to an overstock clothing event when I was in New Jersey visiting with our family.   I had been told by my niece and nephew’s girlfriend that it was overwhelming, there was so much to go through in the large convention center space.    And they were right.   We had a short amount of time and a lot to go through.    I found a few things and met up with them where we changed in the corner, sort of behind some clothing racks where only a few men could watch us without looking like complete pervs.

Of the three things I got, one of them was out of my comfort zone though.   There was this pink dress that was more like something I’d wear if I played tennis (which I don’t) only the skirt was a bit too flowy for tennis.   My cohorts (who were on average thirty years my junior) said I looked good in the dress so I got it.

I didn’t even know what to wear with it but this morning I threw caution to the wind, put it on with some tennis shoes since I was running late to get my daughter to the chiropractor.   I was running late because my daughter had set her alarm, gotten breakfast for herself, had put clothes on, came to my side of the bed and told me she needed to go to the chiropractor.   I had to hustle to get her there and back before her taxi arrived.

That started the strangest day of dress compliments I’ve ever had in my life.   I was in a dress that I think looked reasonably nice on me, but I didn’t feel altogether like I should be wearing it, what with being well out of my twenties.   Everyone said something about it.   People who I wouldn't expect to even be paying attention to what I was wearing said something or other about how it was an interesting style or that it suited me.

One lady towards the end of the day while I was waiting in line at the pharmacy asked me if it was a bathing suit.   I felt the material and realized it was possible it could be, it was one of the materials bathing suits are made of these days.    I mentioned there would need to be bottoms if that were the case, what with it being a skirt and all.   She and I laughed and came up with tactical ideas on the bathing suit/dress theory.

I told her I didn’t trust myself on land, much less in water with a skirt and showed her the shorts I had on, hidden under the folds of the dress.

The Big Boy Update:  My son was playing with the ball Beth gave him that lit up when it was bounced.   He said to my mother and Beth: “I’m going to make this light up by telekinesis…and shaking”.

The Tiny Girl Chronicles:  Yesterday on the ride home from the mountains my daughter said her back was hurting.   She said she wanted to go to the chiropractor in the morning.   She told me she was going to set her alarm for five.   I said, “you have an alarm?”  She replied, “Alexa can do that, you know.”   I explained that the chiropractor’s office didn’t open until six.   This morning I found out later that she did set an alarm, but didn’t get up right away because she had Alexa read her some stories.

Sunday, August 5, 2018

My Apologies To My Grown Son…

…but I have to write this one up because it was too sweet.  We were getting packed up in preparation to leave to go home today, having had a lovely weekend with my parents and some of their friends in the mountains,   My children were excited because Beth, their newest best friend in the whole world (and close friend to my parents), had come back down to spend a little more time with them before we departed.

Beth had joined us for dinner on Saturday night and had brought presents for the children.   There were two feather boas for my daughter, who asked what colors they were and then asked her brother straight away which one he wanted.    Beth said it was for when you wanted to feel glamorous.   I think my son, not entirely sure what the word ‘glamorous’ meant, still wanted to be it because Beth made glamorous sound pretty exciting.   (For those of you who don’t know Beth, she makes everything sound exciting.)

The other presents were balls that had light-up components in them when you bounced them.    The children wanted to bounce them non-stop, but we had to take them away for adult sanity purposes when we got seated at our table at Outback.  

Beth is a very happy, positive person and I’m not really sure how she disengages herself from children, because she speaks child better than actual children do.   My children had invited her to move in with us by the end of the night I think.   I didn’t disagree, we were all having fun with Beth.

But this isn’t getting to the main point of this post, which involves my son and Beth when she came back today to see the children again before we left.    I was packing up when I heard a game of hide and seek beginning on the floor below.    It would appear my children were the hiders with Beth being the seeker.   I knew this because I listened to Beth count in language after language after language.   Some of them you’d predict such as English, Spanish or Japanese.   What you wouldn’t guess were things like Tibetian Himalayan or Donkey.

She finally reached the agreed upon counting number and then went hunting for the children.   The floor they were on was at the bottom of the house—a mountain house—which means it was both the entry level and the smallest level.    But Beth was looking and looking.   And eventually she found the children.

A few minutes later and everyone was upstairs except for my son, who called up to me to come downstairs for a minute.   I called back, “I’m packing up, can you come to me?”   He said he couldn’t, that it was sort of something he needed me to come there to help with.   He didn’t sound upset or worried.   Just that he needed me.

I came down to find him in the room they’d been staying in, now completely empty of their belongings as I’d already packed them up.   He was holding his pants in his hand, having nothing on but his shirt and some socks.   He said he had been really committed to his hiding place and he’d wet in his pants  during the whole process of remaining hidden.

We’ve never shamed the children for wetting their pants and I can’t remember the last time my son did so.   I told him I’d be back with some clothes from the car, to wait there.   He handed me the pants and I got a second surprise—they weren’t wet, they were drenched.  I had to give him points for dedication, he wasn’t giving up his hiding place, even if that meant his pants would suffer.

I came upstairs and sent my husband for the pants while I got a bag for the wet ones.   And I called Beth to the corner and whispered to her what had happened.    She, my mother and I were all giggling because it was just too sweet.   I told Beth he didn’t get that into hide and seek with just anyone, that she was special.   Beth said she’d been saying how her nose had been tickling and she just could’t keep from sneezing and she was doing all sorts of trickery to try and get my son to reveal his hiding location.    Committed my son was to winning the game.

So son, when you read this in fifteen years and realize I told everyone about you wetting your pants at seven during an intense game of hide and seek, I hope you can forgive me.

The Big Boy Update:  My son wrote Beth a thank you note today with a picture of him (I think?) wearing the feather boa she gave him.   He said he hoped she would come to see us.  (Hear that, Beth?  The invitation is open from the whole family.)

The Tiny Girl Chronicles:  My daughter wrote Beth a thank you note on her brailler and then She stuck crystals on it with double-stick tape.   I translated the braille to text on her note so Beth could read it.   Beth has said she’s going to hang it on her mantle.   I’m not sure there could be higher praise.  

Saturday, August 4, 2018

The World Depends On It

We went to a suspended ropes obstacle course this morning.   My daughter wasn’t happy about going because it was raining.   I suspect it was because she couldn’t see it and didn’t know what it was.   She might have had a lot of fun.    We decided to send her home with my mother and send my husband off to play golf with my father, which left my son and me to do the High Gravity course alone. 

We picked the more challenging, three-leveled course that my son barely qualified for in both height and age.   It turned out he was not only unafraid, but un-tireable.   I couldn’t wear him out.   It was a little more taxing on me because he wasn’t tall enough to change his cables over so every section we did I hooked us both in and out of.   Some of the ones he chose were extra hard and I had to scale to the middle and try and push his cables along so he could make it to the other side. 

There was a staff member on the third level who told us there weren’t many children his size that came up that high.    Getting my son up wasn’t the problem, it was getting him down.   And I was tired.  

We met a man at one of the platforms who had noticed my son doing one of the little mini dances he does.    He recognized it and said to my son, “do the Orange Julias”.  My son immediately launched into the FortNite dance and said back to him, “it’s the Orange Justice”.   The man and I laughed together.   

Before I got my son to agree to end for the day, he wanted to do one of the most difficult segments.   I asked him if he was sure.   He told me, “the world depends on it.”   With this new information we attacked the remainder of the course with renewed vigor.  

I’m not sure if we saved the world, but we had a really nice time together this afternoon. 

The Big Boy Tiny Girl Alexa Adventures:   My son and daughter were playing the “Alexa” game, for lack of a better name, in the car yesterday.   One would say, “you be Alexa, okay, now, Alexa play the theme from Transformers Prime”.  Then the other one would start to hum the song.    After a bit I’d hear them say, “okay, you be Alexa now”.    After the switch a question would be asked and I’d hear, “sorry, I don’t know that” just like Alexa would say.   

Friday, August 3, 2018

The Welcome Mat

We drove to the mountains yesterday to visit with my parents.   We picked my daughter up from school and started to drive what turned out to be an almost entire drive in the rain.   We had various levels and types of rain from mist to drizzle to hard rain to almost monsoon.   Both the car an my husband did a good job of getting us here safely.  

As we were about five minutes from their house we got a phone call from my parents, inquiring on what time we thought we’d arrive.   When we told them we were only minutes out, my mother said, “I’ll put out the welcome mat.”

After we hung up my son said, “they have a welcome mat?”  We explained it was a saying meaning they would be ready to welcome us when we arrived.   But that it also could mean a mat at the front door.  

My husband and I forgot all about it as we pulled in and started unpacking the car.   I walked to the front door with my son.   I held it open so he could walk in with his backpack.   As he crossed the threshold, he looked down to see a decorative rug just inside.   He looked at it quizzically and said to me, “this is a welcome mat?”

The Big Boy Update:  My son was so mature today.   I’ve been very impressed with him.    I talked to him a bit about it today and he told me he said he felt like he was ten-years-old.

The Tiny Girl Chronicles:  My daughter said today was “serious full day”.  That meant, she explained, that you could eat as much as you want without getting full, full, full.    For her, this was nearly true—she seemed to eat all day long.   Every time we thought we’d gotten her full, she’d come back and ask for another slice of bread.  

Thursday, August 2, 2018

Girlfriend is Puma?

After the unexpected text from my boyfriend from 1993 the other week, he and I have been sending messages to each other, reminiscing about this thing or that.    I sent him a picture of a vase with a lizard on it, asking if he remembered getting it for me; that it had always been on a shelf in my living room, going with me as I moved from house to house.    He replied he definitely did, and he had one similar to it on his shelf in his house from all those years ago.

We talked about the Mikasa dishes we’d gotten from the seconds stock in the back of the outlet store. He remembered piling through all the stacks of dishes, finding with me all the best of the “seconds”.   I had sent him a picture. saying to this day I refuse to use any other daily wear dishes, ordering replacements from Replacements, Ltd. anytime one breaks. 

He had found some old school style pictures printed on actual photo paper.    He took a new school style picture of the pictures with his phone and send them to me.   And wow, did we look young.  There was one picture I couldn’t place.   We were in seats in a vehicle but I didn’t know more than that.   I messaged back was that when we were in Germany on the train?    He said no, that that was in a green Lincoln Towncar.   I looked at the picture again and there was no indication it was anything other than the possible back seat of a car, much less a Lincoln Towncar of the green variety.

So I asked how he knew and he said he remembered renting it.   It was for one of the weddings we went to with his good friends, one of whom was very tall.   He’d rented the largest car he could for leg room for Greg.   Then I remembered.   The entire weekend of jokes and comments about the car.   Then he said speaking of the train in Germany, he had a story he’d told for years about when we were traveling from Germany to Austria and had gotten stopped by border patrol.

He typed, “girlfriend is puma?” and I started laughing in my car.   I couldn’t stop laughing.   I hadn’t thought about the miscommunication story in decades.  

We had been on the way to Austria when Jason had said he was going to the food car and would be back shortly.    A few minutes later we reached the border of Austria and the train stopped.   Immigration officers came through the car and asked for our passports—only my boyfriend wasn’t with me.   I showed him both passports, explained the situation.   He returned the passports and then headed down the rest of the car.

A few minutes later my boyfriend came back and said, “I just had the strangest thing happen.   This guy tried to stop me as I was coming up the aisle.   He said, ‘girlfriend is puma?’  I said, ‘yeah yeah’ and brushed by him.”    I was horrified.   I said, “that wasn’t some strange guy, that was the immigration officer.   I told him you were in the food car.  He was saying, ‘girlfriend is Spooner?’”

Spooner was my maiden name.    We laughed about and he retold that story many times while we were together and how he narrowly escaped being arrested by the border patrol.   Good times.

The Big Boy Update: My son created a little thing out of some building blocks yesterday.   He’s good at coming up with names for things he creates.   He said this was was, “The friender trender knock some senser”.   He said, “it’s  what I call it because it can knock some sense into and out of you and it can tell if you’re a good friend.”   High functionality for a thing made of five building blocks.

The Tiny Girl Chronicles:  my husband and I have both lost out tempers at my daughter today.   We’re on the way to the mountains to see my parents and for some reason everything is not right with my daughter.   I can’t explain it.   Perhaps the more vision she loses the more everything is about her. We’re trying.   But she pushes so hard and acts like a spoiled brat.   And at some point we snap.    We’re meeting with Dhruti next week and maybe we’ll get some guidance on how we can work better with her and ease her struggle and in so doing help us.   

Wednesday, August 1, 2018

The Callapillar

Autocorrect got me twice in my blog post yesterday, changing words I was typing into words it thought I meant.   Which is very helpful (usually) but confusing when corrects to something you didn’t mean at all—confusing and/or funny.    Anyway, I shall leave finding the mistakes in yesterday’s post as an exercise for the reader.   Thanks to the one reader (my husband) who made it clear I had typos by saying, “maybe you could help translate what you mean here…”

That was yesterday, this is today and in this case, the incorrectly spelled word in the title is exactly what I meant it to be.   It’s the way my daughter pronounces the word, “caterpillar”.    She found one the other day with my husband as they were getting the herbs for the tomato sauce for dinner.   She was quite excited about it, carefully coming downstairs to find me at the computer to have me take a picture:



While she showed me this, my husband was drilling holes in the top of a jar.    They put leaves and a bit of water into the jar and then they put the aerated lid on top.   And my daughter was very happy.    She wanted pictures taken because even though she can’t see, she knows pictures capture something you can see.   And while I don’t understand it, there is something about that that’s important to her.   Something that makes her take 2500+ screen shots on her iPad over the course of a few weeks—just so she has a memory of the moment.

The next day we had to let the cal-lah-pil-ler go, I told her.   She said we needed to put him back on the parsley leaves, because he liked them since that’s where they found him.    And, of course, she wanted a picture of the release, so here it is:

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The Big Boy Update:  I asked my son if he wanted to go to the pool with Blake, our sitter, this afternoon.   My son said, “I don’t like going to the pool.  Blake just talks to people.   Last time he got someone’s phone number.”  I asked, “was the someone a girl?”  My son said, “yes.   He said she was attractive, but she was just a normal person.”

The Tiny Girl Chronicles:  My daughter could feel the caterpillar on her hand, but a lot less than I expected her to considering she’s so sensitive to hearing and feeling some things.   But she was very gentle in return.   She was so careful to not hurt the caterpillar.   He was safety released back into the wild (of the deck garden).