My son is going on a three-day camping trip with his class starting tomorrow. He’s looking forward to the trip, which is in the large state park across from our neighborhood. He had a good time last year with the Lower Elementary classes.
The Big Boy Update: My son was completely unable to focus for even two minutes this evening—which we needed him to do to help get ready for camp. He got in trouble several times. Rebound from the Adderall, which is working beautifully during school hours.
The Tiny Girl Chronicles: My daughter loves to swing on the swing in the back yard. There is one swing on the playground set that accommodates up to four children. She and her friend, Madison, love to swing back and forth together on it. They get up pretty high.
Tuesday, May 7, 2019
Monday, May 6, 2019
Teacher Appreciation
My daughter’s school is celebrating teacher appreciation week this week. One of the things the children do is write a note to their teachers. My daughter excels at writing letters to people. My son struggles with figuring out what to say, but he has plenty of other strengths.
After school today she wrote two of the five letters. She’s finishing dessert now and wants to go and keep writing the rest of them until bedtime tonight. She just types these things out without having to figure out what she’s going to say in advance. They’re very touching. For a first grader, she’s expressive in words.
She still phonetically spells lots of things, although once she learns a word, she never forgets how to spell it. Interestingly, she misspells ‘braille’; I don’t know that she’s ever had to spell it before.
To her VI teacher (whom she adores). She spends an hour with Miss Sample every day.
This one is to Miss B, her Braillest. Mrs. B. stays with her all day, every day. All the materials my daughter has in class have been recreated, in braille and with other tactile elements so that she can complete all the same school work her classmates do. Mrs. B has only one student: my daughter.
She is going to write a letter to Mr. Adam, her Orientation and Mobility teacher, her first grade teacher and the teacher’s assistant tomorrow. She has a lot of teachers and she loves them all.
The Big Boy Update: Speaking of extemporaneous writing, my son is writing a letter to a kindergarten student tomorrow that will be rising into his class next year. This is the first thing he’ll do as a rising “third year” in the classroom he’s been in for the past two years. Montessori classrooms span a three-year cycle, with my son rising as a third year next year. He’s looking forward to being one of the leaders of his class.
The Tiny Girl Chronicles: My daughter wanted to know if today was Friday. We asked her if she remembered yesterday being at the beach. She asked us if we were sure it wasn’t Friday. We told her we were.
After school today she wrote two of the five letters. She’s finishing dessert now and wants to go and keep writing the rest of them until bedtime tonight. She just types these things out without having to figure out what she’s going to say in advance. They’re very touching. For a first grader, she’s expressive in words.
She still phonetically spells lots of things, although once she learns a word, she never forgets how to spell it. Interestingly, she misspells ‘braille’; I don’t know that she’s ever had to spell it before.
To her VI teacher (whom she adores). She spends an hour with Miss Sample every day.
This one is to Miss B, her Braillest. Mrs. B. stays with her all day, every day. All the materials my daughter has in class have been recreated, in braille and with other tactile elements so that she can complete all the same school work her classmates do. Mrs. B has only one student: my daughter.
She is going to write a letter to Mr. Adam, her Orientation and Mobility teacher, her first grade teacher and the teacher’s assistant tomorrow. She has a lot of teachers and she loves them all.
The Big Boy Update: Speaking of extemporaneous writing, my son is writing a letter to a kindergarten student tomorrow that will be rising into his class next year. This is the first thing he’ll do as a rising “third year” in the classroom he’s been in for the past two years. Montessori classrooms span a three-year cycle, with my son rising as a third year next year. He’s looking forward to being one of the leaders of his class.
The Tiny Girl Chronicles: My daughter wanted to know if today was Friday. We asked her if she remembered yesterday being at the beach. She asked us if we were sure it wasn’t Friday. We told her we were.
Sunday, May 5, 2019
Still Alive
My daughter came into the bedroom where I was working earlier today and said, “Alexa, play 'Still Alive'.” This got my attention, because this is one of my favorite songs—a song I used to sing to the children when they were babies, but not one I thought my daughter remembered or knew the name of.
Then, she surprised me even more when she stopped the version Alexa started playing and said more specifically, “Alexa, play 'Still Alive' by Jonathan Coulton.” Then she proceeded to sing along to the song. I pulled out my phone and recorded her singing and sent it to my childhood best friend, saying I was so proud.
The song has an interesting back story. There was a small indy game developer who had this concept of a game they were calling Portal. You had two guns, one which opened up one side of a portal and the other that opened up the other side of the portal. You could open the gate, or portal on the wall behind you and then aim at a wall far across a canyon, opening up the opposite side there. Then by taking one step into the door behind you, you stepped out on the far side of the canyon.
It was new and different. It was novel. It was a puzzle game. You could do strange things with gravity like opening a door on the floor of that canyon far below you and then completing the portal on a wall high above. You could fall down into the door and you’d fly out of the wall with all your falling inertia translated into lateral motion. It was cool.
The little indy game got released as a free add-on to a big game release. That big game was fairly popular, but it in no way achieved the fame that the little game named Portal did. In the game you wake up and you’re a test subject with no choice but to test the portal guns. The computer AI tells you things like hopefully you won’t die like the other subjects did and that if you do survive, there will be cake at the end.
This evil AI is the voice of the game and the foe you ultimately have to defeat. When you beat the game, after having destroyed the computer, the credits roll and a song is sung—by the AI—called 'Still Alive’.
It’s catchy in tune and the lyrics are funny and it launched the artist’s career in part. Today the artist, Jonathan Coulton, has his own week’s cruise where all people are there with similar nerdy interests and in particular to see him perform. And while I have sung the song to my children on more than one occasion since they’ve been out of their high chairs, I didn’t expect my daughter to know it.
I found out later that for some reason they played the song on the way home from the beach today and my daughter liked it enough at this age that she asked for it to be played multiple times. Tonight as I dried her hair we sang the song together.
The Big Boy Update: My son ran downstairs last night just after bed, saying he was going to be sick. He threw up mere seconds later and said he felt much better. He wanted to stay in the bed with me for a bit and then we both fell asleep. He threw up fluids later in the night while I was asleep. This morning I told him and he very sweetly got a cloth, wet it and came to wipe the bed. I told him he was so nice to be willing to clean it up, but that I thought we were going to have to wash everything anyway. He felt fine other than that. Something must have just disagreed with him from dinner.
The Tiny Girl Chronicles: My daughter had fun at the Spring Outing with all the Y Guides in the area at a camp at the beach this weekend. She did lots of things including zip lining. She also did a good bit of bike riding, which surprised both her husband and me. She can see enough to ride a bike. We thought it was beyond being able to see to do that since she hasn’t wanted to ride her bike here at home in a good while.
Then, she surprised me even more when she stopped the version Alexa started playing and said more specifically, “Alexa, play 'Still Alive' by Jonathan Coulton.” Then she proceeded to sing along to the song. I pulled out my phone and recorded her singing and sent it to my childhood best friend, saying I was so proud.
The song has an interesting back story. There was a small indy game developer who had this concept of a game they were calling Portal. You had two guns, one which opened up one side of a portal and the other that opened up the other side of the portal. You could open the gate, or portal on the wall behind you and then aim at a wall far across a canyon, opening up the opposite side there. Then by taking one step into the door behind you, you stepped out on the far side of the canyon.
It was new and different. It was novel. It was a puzzle game. You could do strange things with gravity like opening a door on the floor of that canyon far below you and then completing the portal on a wall high above. You could fall down into the door and you’d fly out of the wall with all your falling inertia translated into lateral motion. It was cool.
The little indy game got released as a free add-on to a big game release. That big game was fairly popular, but it in no way achieved the fame that the little game named Portal did. In the game you wake up and you’re a test subject with no choice but to test the portal guns. The computer AI tells you things like hopefully you won’t die like the other subjects did and that if you do survive, there will be cake at the end.
This evil AI is the voice of the game and the foe you ultimately have to defeat. When you beat the game, after having destroyed the computer, the credits roll and a song is sung—by the AI—called 'Still Alive’.
It’s catchy in tune and the lyrics are funny and it launched the artist’s career in part. Today the artist, Jonathan Coulton, has his own week’s cruise where all people are there with similar nerdy interests and in particular to see him perform. And while I have sung the song to my children on more than one occasion since they’ve been out of their high chairs, I didn’t expect my daughter to know it.
I found out later that for some reason they played the song on the way home from the beach today and my daughter liked it enough at this age that she asked for it to be played multiple times. Tonight as I dried her hair we sang the song together.
The Big Boy Update: My son ran downstairs last night just after bed, saying he was going to be sick. He threw up mere seconds later and said he felt much better. He wanted to stay in the bed with me for a bit and then we both fell asleep. He threw up fluids later in the night while I was asleep. This morning I told him and he very sweetly got a cloth, wet it and came to wipe the bed. I told him he was so nice to be willing to clean it up, but that I thought we were going to have to wash everything anyway. He felt fine other than that. Something must have just disagreed with him from dinner.
The Tiny Girl Chronicles: My daughter had fun at the Spring Outing with all the Y Guides in the area at a camp at the beach this weekend. She did lots of things including zip lining. She also did a good bit of bike riding, which surprised both her husband and me. She can see enough to ride a bike. We thought it was beyond being able to see to do that since she hasn’t wanted to ride her bike here at home in a good while.
Saturday, May 4, 2019
Power Out
We had an unexpected power outage tonight. it was about six o’clock when it happened and my son and I weren’t sure about it for the first few minutes. We don’t know what the cause was, even now, which isn’t too uncommon with power outages these days.
We reported it and I told my best friend to come on over with her children from the restaurant they were messaging me from. They were out of power too it seemed. Everyone came in shortly thereafter and I told them the power was scheduled to return by 9:30. We spent a good portion of the time before it got dark outside with the dog and neighbors, catching up and throwing balls for the dog to chase.
Surprisingly, two power trucks came down our short cul-de-sac street and started making chain saw noises at the entrance to our neighbor’s driveway. If there had been a downed tree in that area it might have made sense, but there were only a few low bushes.
We went inside and got glow sticks out for the children. Just as we’d gotten things chemically lit up in the dining room, the power popped back on. It was interesting how we all tried to figure out what to do in the dark and glow sticks was the only thing anyone could come up with. We’re so conditioned to having power we don’t know what to do without it.
I texted my husband and told him about it. He messaged me back, “we meed those Power Walls installed.” We’ve ordered some Power Walls from Tesla, but they’re slow to arrive as they’re apparently in hight demand. We’ve had them on order for I’m thinking close to eight months now.
The Big Boy Update: My son came in after spending over a day with Nana and Papa and gave me a hug and told me he loved me. He even said he missed me. What a guy.
The Tiny Girl Chronicles: My husband told me my daughter is having a good time at the spring outing weekend camping trip with the Y Guides tribe she’s in. She goes from being able to successfully interact with her friends to hanging back and wanting to be with her father. Some of the time it’s hard for her to successfully play with her peers, although she tries hard.
We reported it and I told my best friend to come on over with her children from the restaurant they were messaging me from. They were out of power too it seemed. Everyone came in shortly thereafter and I told them the power was scheduled to return by 9:30. We spent a good portion of the time before it got dark outside with the dog and neighbors, catching up and throwing balls for the dog to chase.
Surprisingly, two power trucks came down our short cul-de-sac street and started making chain saw noises at the entrance to our neighbor’s driveway. If there had been a downed tree in that area it might have made sense, but there were only a few low bushes.
We went inside and got glow sticks out for the children. Just as we’d gotten things chemically lit up in the dining room, the power popped back on. It was interesting how we all tried to figure out what to do in the dark and glow sticks was the only thing anyone could come up with. We’re so conditioned to having power we don’t know what to do without it.
I texted my husband and told him about it. He messaged me back, “we meed those Power Walls installed.” We’ve ordered some Power Walls from Tesla, but they’re slow to arrive as they’re apparently in hight demand. We’ve had them on order for I’m thinking close to eight months now.
The Big Boy Update: My son came in after spending over a day with Nana and Papa and gave me a hug and told me he loved me. He even said he missed me. What a guy.
The Tiny Girl Chronicles: My husband told me my daughter is having a good time at the spring outing weekend camping trip with the Y Guides tribe she’s in. She goes from being able to successfully interact with her friends to hanging back and wanting to be with her father. Some of the time it’s hard for her to successfully play with her peers, although she tries hard.
Friday, May 3, 2019
Home Alone
I’m at home…all alone. I’m not home alone that often. Okay, wait, that’s not true. I’m home alone a decent bit while the children are at school and my husband is out working, but this feels different. My husband and daughter are away on a Y Guides spring outing at the beach. They left this morning and won’t be back until Sunday.
My son is with Nana and Papa for an overnight visit at their house. Let me sidetrack for a few paragraphs and talk about a wonderful thing: grandparents. We are fortunate to have four living grandparents to our children. Not only are they alive, they’re all four local, at least for part of the year.
My parents are in town here for the four months of winter while my in-laws stay warm in Florida. When my parents return to the mountains in May, my in-laws come back to the state. And until this spring, that mean they were a little less than an hour-and-a-half drive away–which is pretty close considering how some grandparents are far away from their families.
At the end of last year, my in-laws moved closer to one town over and are now twenty minutes away by car. And that makes me happy. Having grandparents around is simply the best.
So today and tonight my son is with Nana and Papa. My children love spending time with their grandparents. Grandparents have a way of spoiling children in a very special way. I remember spending time with my grandparents. All good memories.
So today and tonight I’m home alone. And I’m having a nice time doing nothing while at the same time catching up on things.
The Big Boy Update: My son told me today, “When someone says no, you really shouldn’t ask them again.” This was in response to me asking about fixing hi food. Later on he was hungry and was cranky at me for telling him he couldn’t eat a lot because it was close to lunch time and Nana was going to take him out to lunch. I liked his words so much I told him I was adding it to our Family Rules and to remember it for the future for when his father and I said no about something.
The Tiny Girl Chronicles: I woke up at three this morning to find the dog and my daughter in the bed between my husband and me. This meant my daughter had had a nightmare. I got up and she and I took the dog out and then went up to her bed so she could go back to sleep. She is very sweet in the middle of the night, never minding going back up to bed, because it’s where she feels most comfortable. I helped her find Tigger and Ellie, two stuffed animals that are currently her favorites.
My son is with Nana and Papa for an overnight visit at their house. Let me sidetrack for a few paragraphs and talk about a wonderful thing: grandparents. We are fortunate to have four living grandparents to our children. Not only are they alive, they’re all four local, at least for part of the year.
My parents are in town here for the four months of winter while my in-laws stay warm in Florida. When my parents return to the mountains in May, my in-laws come back to the state. And until this spring, that mean they were a little less than an hour-and-a-half drive away–which is pretty close considering how some grandparents are far away from their families.
At the end of last year, my in-laws moved closer to one town over and are now twenty minutes away by car. And that makes me happy. Having grandparents around is simply the best.
So today and tonight my son is with Nana and Papa. My children love spending time with their grandparents. Grandparents have a way of spoiling children in a very special way. I remember spending time with my grandparents. All good memories.
So today and tonight I’m home alone. And I’m having a nice time doing nothing while at the same time catching up on things.
The Big Boy Update: My son told me today, “When someone says no, you really shouldn’t ask them again.” This was in response to me asking about fixing hi food. Later on he was hungry and was cranky at me for telling him he couldn’t eat a lot because it was close to lunch time and Nana was going to take him out to lunch. I liked his words so much I told him I was adding it to our Family Rules and to remember it for the future for when his father and I said no about something.
The Tiny Girl Chronicles: I woke up at three this morning to find the dog and my daughter in the bed between my husband and me. This meant my daughter had had a nightmare. I got up and she and I took the dog out and then went up to her bed so she could go back to sleep. She is very sweet in the middle of the night, never minding going back up to bed, because it’s where she feels most comfortable. I helped her find Tigger and Ellie, two stuffed animals that are currently her favorites.
Thursday, May 2, 2019
On FIre
My shoulder is on fire. There are all kinds of pain. Some kinds are pain, but they’re manageable, even if they might be fairly strong. Then there are other kinds of pain that are just intolerable. For example, a tiny little bit of sand in your eye can be absolutely miserable. I saw my mother-in-law go through that kind of pain when we were in Hawaii. I felt for her—such a small thing, and yet so very awful to have to deal with.
Another kind of pain is a tooth ache. There is the kind that hurts if you put hot or cold on the tooth or chew hard things so you just avoid those things. That kind of tooth pain can and is avoided by people for years and years—because going to the dentist is something they simply don’t want to do. Then there is the jaw aching, infection or abscess type of pain that will send most dentist-fearful people in because it’s too extreme.
I can deal with lots of different types of pain, but sometimes it’s just too much. This afternoon my right shoulder went haywire. It’s the kind of pain I used to have before I had the spinal fusions. It’s spasming muscles and inflammation that’s out of control. It’s hard to get away from mentally and it’s exhausting. I took a muscle relaxant earlier but it’s not helping so I’m taking a powerful NSAID and trying to go to sleep, although I’m not sure it will help.
My husband and daughter are going out of town for the weekend and I’m useless right now. I feel badly, I should be helping him get ready. I’ll try to help them pack in the morning.
The Big Boy Update: My son has a teacher workday tomorrow. He’s happily playing a four player game on the computer right now something like stick man fights where you try to fling your body at the other stick men and do damage. He is happily yelling at the screen in the basement. I can hear him from upstairs. Tomorrow he spends the day (and night) with Nana and Papa.
The Tiny Girl Chronicles: My daughter went on a field trip to the zoo today. Her father was a chaperone. They decided there needed to be a lot more VI things at the zoo.
Another kind of pain is a tooth ache. There is the kind that hurts if you put hot or cold on the tooth or chew hard things so you just avoid those things. That kind of tooth pain can and is avoided by people for years and years—because going to the dentist is something they simply don’t want to do. Then there is the jaw aching, infection or abscess type of pain that will send most dentist-fearful people in because it’s too extreme.
I can deal with lots of different types of pain, but sometimes it’s just too much. This afternoon my right shoulder went haywire. It’s the kind of pain I used to have before I had the spinal fusions. It’s spasming muscles and inflammation that’s out of control. It’s hard to get away from mentally and it’s exhausting. I took a muscle relaxant earlier but it’s not helping so I’m taking a powerful NSAID and trying to go to sleep, although I’m not sure it will help.
My husband and daughter are going out of town for the weekend and I’m useless right now. I feel badly, I should be helping him get ready. I’ll try to help them pack in the morning.
The Big Boy Update: My son has a teacher workday tomorrow. He’s happily playing a four player game on the computer right now something like stick man fights where you try to fling your body at the other stick men and do damage. He is happily yelling at the screen in the basement. I can hear him from upstairs. Tomorrow he spends the day (and night) with Nana and Papa.
The Tiny Girl Chronicles: My daughter went on a field trip to the zoo today. Her father was a chaperone. They decided there needed to be a lot more VI things at the zoo.
Wednesday, May 1, 2019
Everyone’s Trying
A lot of emails have gone back and forth today. The pediatric glaucoma specialist my daughter saw yesterday has been in an email conversation with my husband and me as we discuss how to best proceed with my daughter’s eye situation. I pulled my daughter’s pediatric ophthalmologist into the chain to have her informed on the situation and to see if she could get in contact with Dr. Trese.
I even called Dr. Trese’s office and left a message with his scheduler, Cat, who knows us after all this time. Cat doesn’t make Dr. Trese’s schedule, she just coordinates it, but it was the only thing I knew to do to contact his office and see if she could ask about getting us on his schedule.
Then I got an email from Dr. Grace, our pediatric ophthalmologist, who has been our champion so to speak since the very first days when my daughter had the traumatic damage to her malformed eyes from an infection. Dr. Grace was out of the country. She was at a conference that Dr. Trese was also at.
She said he was quite busy (he presents a lot from what I’ve come to understand) but that she was going to speak with him when he had a minute and she what he wanted to do given the latest information on the state of my daughters very delicate and damaged eyes.
I go from feeling lost and out of control, unable to do anything to help my daughter, at the mercy of those who can help to being humbled by the responsiveness of my daughter’s doctors when we need them. Hopefully we’ll know more soon. Knowing we may need to take action on her eye to try and save her vision has me on edge, even though there’s no imminent danger and we have time to make any decisions.
The Big Boy Update: My son got out of school early today (by fifteen minutes) to go see Avengers: End Game with his father and grandfather. They all enjoyed the movie, although it was interrupted twice by the fire alarm and they had to exit the theater. Apparently someone kept burning the popcorn.
The Tiny Girl Chronicles: My daughter went to see Dumbo with Nana today. She loved it and enjoyed the assistive audio track she could hear with headphones that told her what was happening on the screen. She came home and had Nana put her hair in pig tails just over her ears so she could have Dumbo ears.
I even called Dr. Trese’s office and left a message with his scheduler, Cat, who knows us after all this time. Cat doesn’t make Dr. Trese’s schedule, she just coordinates it, but it was the only thing I knew to do to contact his office and see if she could ask about getting us on his schedule.
Then I got an email from Dr. Grace, our pediatric ophthalmologist, who has been our champion so to speak since the very first days when my daughter had the traumatic damage to her malformed eyes from an infection. Dr. Grace was out of the country. She was at a conference that Dr. Trese was also at.
She said he was quite busy (he presents a lot from what I’ve come to understand) but that she was going to speak with him when he had a minute and she what he wanted to do given the latest information on the state of my daughters very delicate and damaged eyes.
I go from feeling lost and out of control, unable to do anything to help my daughter, at the mercy of those who can help to being humbled by the responsiveness of my daughter’s doctors when we need them. Hopefully we’ll know more soon. Knowing we may need to take action on her eye to try and save her vision has me on edge, even though there’s no imminent danger and we have time to make any decisions.
The Big Boy Update: My son got out of school early today (by fifteen minutes) to go see Avengers: End Game with his father and grandfather. They all enjoyed the movie, although it was interrupted twice by the fire alarm and they had to exit the theater. Apparently someone kept burning the popcorn.
The Tiny Girl Chronicles: My daughter went to see Dumbo with Nana today. She loved it and enjoyed the assistive audio track she could hear with headphones that told her what was happening on the screen. She came home and had Nana put her hair in pig tails just over her ears so she could have Dumbo ears.
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