Five Out of Ten

My daughter had her first therapy session with Dhruti today after a decent bit of a hiatus given the current state of the infectious world.   I was working while she was in session but I could hear through the door and it sounded to me like she was having a play date more than a therapy session.   For my daughter, this isn’t a bad thing; her feelings and thoughts come out in her play.   But she’s also old enough now to be able to verbalize how she feels and what she’s thinking.   

On the ride home I asked her about what she’d done with Dhruti and then I asked if she remembered to talk to her about how she’d been feeling.   “About what, mom?” she said.   I reminded her of the day she say on the floor in her room, crying and saying if only she could see and how right then I told her I was asking Dhruti when she was available. 

My daughter wasn’t bothered by the thought of talking about her feelings on being blind it seems because she said, “sorry, mom, I’ll talk to her about it next time.”   Then I though I’d ask her some more information on how she was feeling in general.   I asked her how happy she felt lately.   She thought about it and said, “a five” and then added, “one a scale of one to ten” when she realized that wasn’t enough information as a number alone.

I asked her how she felt when she had been so unhappy, before we got the Prozac to help her feel better.   She said pretty quickly, “a three.”   I wondered if she thought more medication might help even though we didn’t plan on increasing her medication based on observed behavior.   I asked her if she thought more medication might help, to which she immediately responded, “no, I don’t think I need more.”  That was good to hear, I thought. 

We talked a little more about it and she said she wasn’t down at a five all the time.   It’s frustrating and lonely for her at home with no friends to play with over the holidays and remote learning on top of all the blindness to deal with and accept.   So she has down times, but she also has fun every day and is happy for some of the time.   Hopefully more of the time than less of the time, but for now, I’d gotten more information than I’d gleaned from her in possibly ever on how she felt. 

We had a half-hour drive so I started telling her about what happened when she lost her vision initially.   I thought she knew the story inside and out, but she really didn’t.  What was interesting was she said to me at one point that she had three very clear memories of things she remembered seeing.  

Again, this is information I would have loved to have from her, but it wasn’t coming out until she was ready to tell it but more likely until she realized it was something she could piece together and articulate.   She was young, not quite four when everything started and it went back a full half-year before when we did eye tests. 

The first memory she said was, “so clear” in her mind.  She was in a doctor’s office and I had some pieces of paper and was trying to get her to read the letters on them.  It was a brightly lit room with a table on the other side.   We sat together until the doctor called her in and I kept trying to see if she could tell what the letters were on the papers.  She said she really couldn’t tell so she just told me something as an answer and then the doctor called us in.   

That would have been Dr. Grace, her pediatric ophthalmologist, and the pages of letters were huge letters taking up most of the page, or perhaps they were animals.  I printed out a lot of things in black and white silhouette to try and determine what she could see.   She did get tired of the testing but I was panicked enough as a parent that I was less worried about upsetting her and more worried about what was happening to her vision. 

The second memory was of her playing with Paw Patrol characters on the bed.  I told her that would have been in Detroit on one of the trips to see Dr. Trese.   She said she had to stop playing with the characters because she had to get her finger pricked. 

She then told me, “the last memory is with dad.  Dad was rolling around the injection machine with the wire going into your arm.  We were playing fun things with handprints.  I wanted M&Ms so we went to the food court with the injection thing.   I remember the brown tiles on the floor and some shelves low down that had things in them.”

This I believe was during the early few months when she was receiving infusions in the hope that what had happened to her eyes was autoimmune and could be restored in part with IV steroids.  She had to have the medication drip into her arm for a good while and apparently one time she and her father went to the kiosk on the ground floor to get M&Ms.   

I asked her if she remembers what things looked like in these memories.   This question was hard for her because she says she doesn’t remember seeing.  But somewhere in her brain she remembers something and understands it in some way.   She didn’t have an answer other than she doesn’t remember seeing even though she does have some memories. 

 

I asked her if I could write these memories of hers up in the blog here tonight so we could have them written down to always be able to remember them.   She said, “of course, mom.”

The Big Boy Update:  I just found some things that came out of my son’s backpack from the start of the winter break.  There were two books to read in the stack.  Was he suppose to have read those two books over the break and now he’s going back to school early next week and hasn’t read any of them?  He played it off, but I’m having him read some every day just in case we totally messed up the holiday reading assignment he isn’t sure he had. 

The Tiny Girl Chronicles:  My daughter came in tonight and said she’d had another memory of seeing she’d forgotten.   It’s just like memories go in that’s it’s just a trivial memory of a single event on a normal day in her life.  But she remembers it.   She, her brother, and Madison were playing in the back yard on the mini-tramp we got when they were very young.  It has long since rusted away but for years moved all over the back yard.  My daughter said at this time we still had the rock climbing wall on the play structure and somehow one of the little legs fell off the mini-tramp.  My son teased Madison that it was her leg that had fallen off.   That was the memory.   She couldn’t describe what it was that was a seeing part of the memory, but she knows there was some sight involved.   It was definitely during the timeframe she could see, based on her descriptions of things.   

Christmas And Hanukkah In January

We had our ex-door neighbors over for dinner tonight.  For years they’ve had us over during one of the days of Hanukkah to celebrate with them.   Our children look forward to it every year, as do the parents, I think.  Especially so this year given neither family has been much of anywhere except essentials and family for the most part since the beginning of COVID-19 lockdown in the United States.  

My husband made a decidedly not-Christmas or Hanukkah dish of Butter Chicken tonight, which was enjoyed by all.  My daughter was vocal the entire time that there was too much adult conversation going on.   It’s hard to explain to a child who wants to be involved that adult conversation is just going to happen.   We want to catch up, we’ve missed each other. 

After dinner we gave their children (and our two sitters since COVID-19) their stockings, filled with candy and silly things my daughter had helped me pack as tightly as she could into the stockings—the same stockings she and her brother get at Christmas.  My suggestions on how to pack a stocking are still not setting off alarm bells about Santa with her.  But she wants to believe, and I can understand that and support it for as long as she wants.

Then my children opened up their sacks, yes, I said sacks.   They went overboard this year, getting little things and wrapping each item in their own tactile paper and ribbon, some in fun ways for my daughter to discover.  She loved it.   My son was animated and funny the whole night.   

They left later than normal bed time, but it was a special night and one the children will remember.   

The Big Boy Tiny Girl Too Much Candy Update:  Our friends got the children lots of candy, including a mega gummy for each.  My son got a huge gummy dinosaur and my daughter has a glitter gummy unicorn.   Stephen, the father, suggested they eat as much as they could before bed.   They did get some in while we were talking and in-between my daughter sitting on the whoopee cushions they’d had in her sack.   They went to sleep without a complaint, sugared up and exhausted. 

Background Noise

Different people have a different level of tolerance for the amount of background noise under which they can function without being distracted.   I think my husband has a high level of this because he can not only ignore everything happening around him when he's working, he can ignore when people are directly talking to him, trying to get his attention.   It is a skill he has leveled up to a high level.  

I'm fairly good at it in that children can be screaming, laughing, playing, arguing, you name it, all around me and unless they're bothering me specifically or I catch wind that they're hurting something, someone, or are breaking explicit rules, I can generally ignore it.  Or intervene.  Or tell them to go elsewhere.   

I can do that with relative ease.   What I can't do well is if an adult conversation is happening right near me.  For some reason, I pay attention to what's being said.  I just want to tune them out, but I can't overcome the distraction.

Why am I telling you this?  Because there is a Zoom board meeting happening behind me that my husband is on.   I don't need to know what they're talking about, but since it's about our neighborhood and has some relevance to me, I keep getting distracted from writing this post.   

I'm going to write something longer tomorrow.   For today, I got through a lot of emails, which has been a long time coming.  My word, I've been behind. 

The Big Boy Update:  My son said he had a good day at school today.   He had the computer for class meetings, was getting email, got into the classroom Google Drive, and ended the day doing an art project in which he got a lot of blue oil crayon all over the table (it was a very nice picture).  He did all of this almost completely by himself.  

The Tiny Girl Chronicles:  My daughter was loud today.   Some days she's loud a portion of the time, but she is always, always loud at least some of the day.   She just likes top volume coming out of her mouth.   When it's anyone else, she says things are too loud.   She was quite happy to see Blake back today.   I was happy to have him back too.

A Message to All

My son starts school remotely tomorrow.   My daughter is back on the track system after the first half of the year with everyone in the county being on traditional school schedule.   This means she has another two weeks of vacation before she's back at school.   My son's school elected to do a bit of distanced learning to give anyone who might have seen family over the holidays time to either be or not be positive with COVID-19.   This means we have two more weeks with children at home. 

Tonight I was going through my son's backpack to get his things out and put them on the work table for tomorrow's start at eight-thirty in the morning.   You would think this would have been something we'd done by now but it seemed to get missed, with his backpack hanging on the hook in the mudroom all through the holiday break.  

I found several things but the one I liked the most was this message he clearly spent a good bit of time creating with his color pencil set, sharing several messages.   First and foremost it was to stay safe.   Then wishes for a merry Christmas, but lastly, because he didn't want to leave out anyone who didn't celebrate Christmas, he covered everything else. 

The Big Boy Update:  I also found in my son's backpack something I thought was an unpacked lunch and I was frustrated that I didn't think to check all this time so I dumped it on the floor.   It turned out to be a pottery project he'd made at school and was fortunately not broken.   I said to him, "Is that a cave?"  He was very happy that I'd realized what it was, telling me, "you're the first one who's figured it out, Mom."

The Tiny Girl Chronicles: I got the family a domino set for Christmas.  Not the kind where you play against each other, the kind that you set up in long lines and topple over.   I had found a site that offered different ways to do things beyond just making a single line.   Yesterday we opened them up and my daughter has loved playing with them.   There are "runs" that she can place dominoes in that will stay attached and then hinge downwards in sequence.   In short, it's something she can be successful with.   Dominoes are so incredibly hard for her because to find one, she has to feel for it and that pretty much means knocking everything over.   The additions I got let her build lines of dominoes without the danger of tipping one or more over—and she loves it.   She's been messing around with the options so far and hasn't built too many courses or runs, but she's gotten the hang of it now and I think tomorrow she will.   She was disappointed we told them it was bedtime tonight.

Socks and Pajamas

I may have come upon a measurement that indicates how this holiday has been for me.   Tonight, I put away the laundry.   There were towels, sheets, and other household things, and then there were my things.  I do my laundry and pull in the children's whenever there is enough for one or two loads.   My husband does laundry entirely separately.   This is for several reasons but one, in particular, is that his clothes are almost all dark.   It's easier for him to just do his as a dark load self-contained while I handle the rest of the laundry. 

After putting up everything else, my clothes lay in a small pile on the bed.   I separated everything out to find socks, pajamas, and three other items.   That was it.   It would appear that for the last while, the only things I've been wearing are socks and pajamas.   

I have to say, I'm rather happy about the change in the clothing requirements these days.   Without a doubt, I'd rather be free of COVID-19 and having to dress in work clothes every day of the week, but as we're stuck with COVID-19 for at least a while longer, I'll take pajamas as daily wear as a side benefit. 

The Big Boy Update:  My son is working on his thank-you notes.   He would do a much better job if he were taking Adderall, but since he only takes it for school hours and prefers not to be on it at other times, I'm working with his hyperactivity and distractability and getting what I can out of him for note.   I'm balancing that with his self-image, which is easily bruised as he thinks he can't do things right now.   Some of his notes may be short, but the words in his mind are many more in gratitude.    I've had him send video thank you's to some people for his birthday presents because he is so much more successful at expressing how he feels.  

The TIny Girl Chronicles:  When we were doing the laundry I noticed my daughter had only one pair of underwear across the ten-odd days the laundry cycle was covering.   When I asked her she simply said, "oh yeah, I don't wear underwear."   My commando nine-year-old.  

Bang! Patter Patter...

My daughter has come into our room for many different reasons during the night.   Sometimes she's had a bad dream or she's woken up early or her brother is bothering her (because she woke him up) but last night she came in for a reason that was new in a different way. 

She said she's heard a loud bang in the attic, followed by a walking or pattering sound.  She was scared and there was no way she was going back to bed without someone checking it out.   I suppose I drew the short stick because my husband was more asleep than I was, so I got out of bed with her following me, asking if she could spend the rest of the night in her brother's room. 

My daughter is susceptible to suggestion, especially when it comes to being afraid about something.   My husband thought he'd heard a sound like animals had gotten into the attic the day before and even though he found no evidence of such, it stuck in my daughter's head. 

She had gone up to the attic herself and said out loud, "I'm a little blind girl, is anyone there?"  That, in and of itself was interesting to hear her say that.   She didn't get an answer and I was hoping to discover something had fallen down.  I had no such luck though. 

There was zero sign of an infestation, particularly one of the size that would be making bang noises.   I found something I thought might have fallen after the holiday decorations were put up, but later my husband told me he'd knocked it over and hadn't gone behind the shelf to pick it up. 

After reassuring my daughter there was nothing to fear in the attic and that I thought she'd be fine, she asked again if she could finish the night in her brother's room.  Yes, she could sleep in the bunk bed, but she needed to go in quietly.   

I watched her climb up to the empty, top bunk and then went back to bed, only to sit bolt upright when I heard something that sounded like a large door slamming down from the direction of the attic and my daughter's room.   At this point, I got my husband up.   He found nothing and we spent the next ten minutes look and listening through video feeds from the cameras outside the house, thinking with all the rain perhaps it was a branch. 

An external search of the house turned nothing up but one camera, located at the front door, did hear some sort of muffled sound.   We're not sure what it was because we gave up at that point.   My daughter made the mistake of waking up her brother when she heard the second noise. That did not go over well.  At all. 

Today, my husband took the drone and flew it over the house, and found no downed branches.  Eventually and finally, we decided it must have been a big gust of wind, even though it wasn't particularly windy, and the garage door panels banged back and forth once.   Hopefully, tonight will be a quiet night.

The Big Boy Update:  My son is going to have withdrawals from screens when distanced learning starts on Tuesday.   His computer will be fixed tonight and he can do some gaming on it before he has to go back to school.   It's been broken since December 24th.   As I type this. his father has the computer completely apart on the table to add the replacement parts for the ones that burned up with the power supply debacle which took his computer out last month.

The Tiny Girl Chronicles:  My daughter was up a lot last night so I wasn't surprised to find her asleep this morning at eleven when I went to check on her.   She had fallen asleep while listening to an audiobook.   When I touched her shoulder she lifted her head, clearly just coming out of a dream, and said, "are we really moving to a new house?   I assured her we weren't.  

To Draw a Star

It's nearly midnight, again, and I'm just sitting down to write a blog post for the day.  It's been a busy but productive day.  Last night we rang in the new year in the front yard with my husband, waving our reusable, battery-powered glow lights from Uncle Bob and Uncle Brian.   The light show my husband had custom made to count down to midnight, including a dropping ball from the roofline to the garage, followed by pictures of fireworks going off all over the house was a fun way to end 2020.  

My daughter gave me a little pillow for Christmas that was soft in both material and consistency.  I told her there was a moon on it as well as some stars.   Both she and I like to name things and I told her I wasn't sure if I wanted to call it 'Star Pillow' or 'Moon Pillow' (following the naming standard she likes to use for things).   After a few days, I said I'd decided on Moon Pillow and she continues to check to see where Moon Pillow is, including borrowing it to use it here and there. 

I told her I could teach her how to make a star like the ones on the pillow if she was interested, and after showing her how to make one, she'd be able to draw one.   She was interested so we went up to the craft room where I got the corkboard, some push pins, and string.   I placed the pins on the board in a pentagonal orientation and tied the string to one of the five. 

I let her feel the configuration and then explained all she needed to do was take the string from the location it was, skip one of the pins going around and then loop the string over the next pin.   Repeat that step until she was back at the first pin and she'd have a star.   

She did so and then we talked about the geometry inside the star.   She undid it and redid the star several more times.   She's recently told me she hates braille (even though she types away on things she wants to write down most days of late.)  She said she couldn't draw a star because she'd get lost in the writing of the shape. 

This is true, it's hard to write or draw with your eyes closed.   Try it yourself.  Take a sheet of paper, close your eyes and try to draw something simple like a stick figure or a dog in profile.   Once you pick up the pencil you don't know how far to move to get to other areas you've drawn.   My daughter writes and does so in large letters and we can sort of read it.   She's getting better, but it's hard for anyone, and for her, considering she has no memory of what things look like, it's doubly hard. 

But she wants to write, so we're supporting her efforts.   And that's why the star came to mind.   It's five connected strokes that return to the starting point, which she can keep her finger on.  Drawn stars are usually asymmetrical and don't need to be perfect to look nice.   I think she can do it and I think she'd like to be able to draw something successfully.   Tomorrow we'll see if she can draw one using the landmarking skills she already has.   Here's the star she made today:

The Big Boy Update:  My son has been taking care of himself so much lately.   While his sister is bored and lonely, he is spending his time doing different things.   He is getting in more screen time than he really should have, but his father and I are also spending a decent amount of time in front of our computers, phones or tablets so we're trying to be reasonable yet flexible with him.   He was able to go and play outside with Rayan a few times, but it's been raining for most of the last three days so that's been less frequent than he would like.   He's so self-sufficient.   What he does crave is our attention when he wants to talk to us about the things he's interested in or excited about.   I try to listen and ask questions.   He absolutely loves it when we're interested in what he's excited about. 

The Tiny Girl Chronicles:  My daughter would love a friend right now that is her age she could play with. Today, though, she got to make chocolate chip M&M cookies with her father from scratch.    She called me up to try the butter and sugar is before the dry ingredients were added, then again to try the dough which she I and love.  Then again when the cookies were ready, telling me which spot to walk to (describing our kitchen as she sees it motion-wise instead of landmark-wise which was interesting) so that I wouldn't get the cooling cookies and could instead get the ones that were ready to eat.   It made her day, making those cookies with her father.   Then, she wanted to wrestle with him.   She so needs a friend.