A Year In Words

I have three large volumes of writing m bound notebooks from my daughter’s first grade year.  These are writings in addition to the weekly free writing sessions that come home weekly.   I knew she wrote a lot, but I had no idea it was so much.   I’m not sure when she had the time to do all the writing, but somehow she got three inches of brailled stories and memories written up in addition to all the other work she has.

If you think about it, typing is actually faster than writing.  If I had to handwrite this blog post it would probably be about a tenth as long every day.   Typing is easier in a way and my daughter loves to write.   As I read through the notebooks I pulled out a few items to share here.   Much of the writing was creative story telling.   She wrote about animals making friends with other animals and their adventures a lot.   She also wrote about what’s happened in her life like her own journal or diary.   Some of the stories were very creative, and some of the memories show what it’s like to be blind.

Here are some snippets of her writing, listed by date.   I’ve preserved her phonetic spelling and punctuation (or lack thereof) which improved as the year progressed.

August 1, 2018: I cheride to find my way home but I got lust finding my way home but I got lost then I yeld for help but know one came so I wated I was hungry then I herd you col so I herd so I lisend for yar to go but then I fawnd my way back to you then I started this conforsashin then I started to sing this song downt you want to come in side yes I do I do not like swet. Do you like swet on your forhead? Yes I do beccus it ceeps me coll.

October 23, 2018: On the day I tryed my costoom. I am dresing up like a water melinsine (watermelon). I am skard to trikortreet. With my water melinslise. I do not want to go tricknrtreeting but I want candy.

March 5, 2019: Once upon atime there was a squearl who had a acorn he loved very much. One day he went for a walk with his acorn and droped it on the graound. But he did not see it yet. Then he dug a hool as he put a acorn in and baryd it nexst to his home and went in to his den. He slept there for manny years. When he wouk up he saw a tree that he had made and he did. Then an acorn feal and boded him on the head soon he was nearly baryed in them. Then he under stoot the tree he had made was made out of his baluved acorn cry with happynis he ran up the tree that had druped them and lived there happily and peesfoll intil the end of his days.

April 26, 2019 (Easter Sunday about how she and her brother hid Easter eggs for each other to find): I hid eggs for Greyson that my mom brot. I hid them upstars. I hid the golden egg in a drore and a lot on a bench with stuffed animals on it. I put some in baskits that had stuffed animals in them. I hid some uthers too. Then Greyson found them very, very fast. He hid some for me and I found them slowly.

The Big Boy Update:  When my son was talking about being half-way to high school he also said to me, “are you gonna send me to college?”   I told him, “I hope so.”  He said, “good, I wanna go to college.”

The Tiny Girl Chronicles:  I’ve been emailing my daughter’s teachers about her upcoming surgery.  We’re building a list of questions for the doctor such as what her activity restrictions will be when she returns to school, when she should return to school and if she will have medication that needs to be administered while at school.   My daughter is growing more anxious about the upcoming surgery.   This manifests as her being obstinate and cranky, sometimes even crying.   She broke down while doing math today—and she loves math.

Three In, Three Out

It took about three hours to get my daughter’s full head braided.  I think, after two days of working with a less than enthusiastic child, it’s going to take about three hours to get it fully out.  Yesterday I got her in the tub and we worked on getting the aluminum foil off the ends so we could remove the beads.   The aluminum foil pieces were small and tightly wrapped around the ends of the braided hair.   After weeks of salt water, pool water, showers and rounds and rounds of sunscreen, they were a mess to unwrap.

I had about sapped her willingness to help me (her help was minimal, mostly telling me which braids I couldn’t undo, namely any of them).   I didn’t even get into the act of unbraiding because it was past bedtime and there are over forty individual braids, some basic braids and some the more complex corn row type.

Today when she got home she was assailed with all kinds of things she didn’t want to do.   First we had to do drops and pressure medication.  Next we had to take her pressure to report to her doctors prior to surgery next week.  During that I annoyed her to no end (upset her is more like it) asking about how her vision was and what changes she’d observed.  Getting real information out of her is hard, getting her to cooperate when all she wants you to do is leave her alone about her eyes makes it doubly hard.   Telling her this was important for her future vision put pressure on her I had no choice about—I had to have some real answers.

After sending an email to her doctors and surgeons while she ate dinner I told her it was time to start the unbraiding.   The only way I accomplished this was by letting her listen to her audio book (Harry Potter book five) while I combed each braid out individually.   My back is screaming at me now and I’m only about two-thirds done.   Tomorrow I’m going to have to stick her in the tub and finish the job.

The thing about her hair is it’s gross.  Even though I tried to wash it last night, the strands were on top of each other in the braids and couldn’t be cleaned well.   I have greasy, sticky hands from unbraiding her hair so far.   Right now she looks like Rosane Rosanadana from Saturday Night Live.  Her hair is about as frizzy and “poofy” as my daughter calls it as it could possibly be.  

Tomorrow it will be washed, washed again, washed a third and possibly up to five times to get all the gunk off the strands.   Then we’ll dry it and it will be her nice hair that I love again.   She’s loved the braids though.   I think she might go dreadlocks when she gets older given how much she’s liked having to do nothing to her hair.

The Big Boy Update:  My son told me yesterday, “lately I’ve been thinking about middle school…because I’m half-way to middle school.”

The Tiny Girl Chronicles:  My daughter reported having, “laser eyes” the other day.  The way she described it sounded alarming in a way, like possible retinal detachment.   So I’ve been in conversation with her VI teacher at school to gather information from my daughter, two of my daughter’s surgeons and her pediatric ophthalmologist to find out if we need to be concerned and if, for any reason, this means we shouldn’t proceed with the surgery in a week.   Everyone wanted to defer to Dr. Trese, since he’s the retinal expert and knows my daughter’s eyes the best.   I wrote everything up this afternoon and sent an email.   He responded quickly and said he didn’t see a reason not to proceed and was glad things sounded like they were going well.   The net of the situation was that while my daughter was experiencing some variations in vision, they didn’t sound like signs of retinal distress in any way.   So we’re a go for surgery this coming Wednesday.

Punching My Monitor

Prepare for random stream of topics; I’m on a tight timeframe tonight and my brain is swimming with lots of items.  

My son was playing a virtual reality game today using my husband’s VR headset in the basement.   It’s truly immersive, so much so that your brain thinks you’re really in the environment—even if it’s a fantastical one.   Apparently my son wasn’t paying attention to where the edge of the “world” was in the fighting game he was playing and got off to the side of the room where my computer and monitor were—and he punched my monitor.   My monitor that I’m looking at now and love.   It’s so big and realestatey (that’s not a word, I know, but I like it so I’m going with it.).   The monitor was fine.  

My husband and I are back after weeks out of town and on vacation.   We had our first weigh-in today (something we’ve always done on Monday’s and tracked for years).   We gained weight, but not too much considering there were Mrs. Brizzles Buns, “the best buns on the beach” to list only one of the delicious, high-calorie, high sugar content items we were forced, forced I say, to eat while on vacation.

My daughter has an upcoming pediatric urologist appointment to have an ultrasound on her bladder and to talk about next steps for addressing the recurring bladder infections she’s been having for the last year.   We’ve had her on antibiotics for over two weeks now.  We were fortunate in that I continued to have her antibiotic filled when she stopped taking it a while back and also that I brought it along on the trip.   Otherwise we would have been in big trouble at sea.   We’ll know more on the bladder status soon, hopefully.

My daughter also has surgery next week to put in a glaucoma drainage device in her left eye.   It may be coming none too soon as she’s telling us she’s seeing bright spots in her eye.   I can’t tell if this is a game she’s playing or if it’s really something going on where she’s seeing things more clearly from a light perspective, or if it’s retinal issues.   I think it’s nothing, but I don’t like not knowing.   We’ll find out a lot more after surgery next week.  Lots more information on that coming soon.

My daughter started second grade today.   There is a scheduling situation with her year-round school in that there is only one class at her grade level during Track Four.   That means she’s with the same students from kindergarten through fifth grade.   She happily went to school this morning and saw every one of her friends as well as her braillest and VI teacher.  The only one that was new was Mrs. Baker, her second grade teacher—who she already loves apparently.

The Big Boy Update:  I had two blog post things for this section within the first five minutes my son was up this morning.   I have no idea why, but the first thing he asked me was, “I wonder if life guards get tans?”   Then he went upstairs and got dressed.   He’s always done a good job of coordinating his outfits.  Today he came downstairs and told me he was dressed in all blue (including his underpants).   He said, “Blue is my favorite number.   I mean letter.   I mean color!"

The Tiny Girl Chronicles:  I sent my daughter off in her “cab” this morning which was a new driver and new company.   This one is more strict and likely more safe.  There is a camera in the car, the driver can’t pull their phone out while driving and in this case, she got to us with a van that had only seventy-nine miles on it.   We are also required to acknowledge that we’ve received our child at the end of the day.   For the last two years my daughter has just disappeared into the house and the driver has assumed that meant we were home (we were).   To some that might be alarming but it worked fine for us as many times we weren’t close to the door when she got home.   She likes her new driver and so do we.

Very Special Bottles

My daughter starts second grade tomorrow, not third grade like I said in yesterday’s post.   That would be my son.   They grow up so fast sometimes you just add a year or two on in your mind, figuring you’re still recovering from the grand adventure that is parenthood and have forgotten how old your children are…again.

For the sailing trip, and so as to ease my children into a change, I got them new backpacks.   If I had told them I was getting them new backpacks for school straight up, both of them would have balked, dug their heels in, and insisted on using their much smaller, worn out backpacks they’ve been using for the past two years.

There were complaints about the backpacks being too big for them and they couldn’t possibly manage them when we first put them on their backs as we headed to the airport for the sailing trip.   By the end of sailing and the family reunion trips they didn’t think much about the backpacks, hoisting them on their shoulders without a word of complaint.  

Which meant I could hide their old backpacks in the attic and declare mission accomplished, or at least for that item on my list.   Today I filled my daughter’s backpack with lots of things she’ll be carrying to school tomorrow from the teacher’s classroom supply list.   This includes things my daughter will use, and things for general classroom use such as a box of tissues and Clorox wipes.  

The other thing I put in the side pouch of my daughter’s backpack was a special water bottle we got on at the family reunion.  Aunt A had them made for everyone.   They have the reunion date and location and a nice beach picture on the side.  And because we were all going to have the same water bottle, to keep them straight my husband created name labels my father-in-law put them on each bottle.   Here they were, all lined up, ready for everyone to arrive for dinner the first night: 

The water bottles were a nice way to remember the reunion but also helped with plastic waste as we used them over disposable water bottles.   There were a lot of us at the week-long reunion, which adds up in plastic water bottles saved. 

The water bottle fits perfectly in the side pouch of my daughter’s backpack.   The narrow part or neck is just at the right height for the elastic band of the side pouch to hold it in snugly.   I told my daughter she could take her special water bottle to school…but she couldn’t lose it, we didn’t have another one!

It was right about then that my husband came in the garage door with four of those very same water bottles.   His parents had brought us some of the extra ones from the batch Aunt A had ordered when they returned to town today.   I’m very happy about that, because if you know children like I bet you do, they are great at losing things.   And I didn’t want my daughter to lose her water bottle. 

And on another water bottle note… I ran my first race a long time ago it would seem.   Maybe six years ago?   Ever since then I’ve had the cup they gave me when I completed the race on my nightstand.  I use it every day.   It’s pretty beat up after all this time and the crack in the side makes it so I can’t wash it in the dishwasher anymore.   So last night when we got home I officially retired that cup and have replaced my nightstand water container with my family reunion water bottle.   Thanks, Aunt A!

The Big Boy Update:  My son has had YouTube removed from his iPad.   He was watching some things that weren’t that bad, but weren’t really great choices for him either.   My husband removed the app, leaving him with YouTube Kids (which he dislikes).   He can, however, watch YouTube on the main television for screen time.   We will be around and can tell if he’s not making good choices on what to watch.

The Tiny Girl Chronicles:  My daughter has a sneaky way to get dessert.   She goes to our sitter’s house next door and asks Bryna, their mother, if she can have a popsicle.   Bryna can’t say no to a cute little girl who came all the way over, feeling her way slowly and carefully through the grass and concrete, until she found her way to their front door.   Heck, I don’t think I could say no to that either. 

Vacation Over

Testing,  testing, one two three….  Okay, I think a baby wipe and the edge of my cuticle clippers fixed the space bar issue I was having last night.   Something must have gotten under the edge of the spacebar, causing me to have to put extra force every time I used it.   But it seems better now—a relief since that means it’s not something broken.

My family is in the car, heading home from New Jersey.   We got up at six o’clock and were on the road by quarter to seven.   We’re taking the slightly longer, but much less traffic-prone route that starts with the ferry about a half hour south from where our family lives.

Taking the ferry one Saturdays in the summer means making an early reservation to get a good time slot.  Even planning close to a week ahead, we either had to take the 7:30AM or the 5:30PM ferry.   With a long day of travel ahead of us, we opted for the early slot.

The dog is in the front passenger seat, my children are in the middle row and I’m in the third row with luggage all around me.   I can get a lot done back here and don’t mind the lack of space.  The  dog likes to move from the seat to the floor and is familiar with riding there so it seemed like the better option.   She’s also closer to air conditioning vents and since she’s always hot, that’s a good thing.

It’s been a long vacation, taking almost two weeks surrounding our sailing trip, followed by a week on the New Jersey shore with over thirty of relatives on my husband’s side of the family.    But it’s over.   And I’m glad.

I love vacation, but I always love coming home.   My daughter starts second grade in two days and we haven’t gotten her school supplies yet.   I’m ready to get back into our less exciting but more predictable home life.   We already have texts from neighbors, asking when the children will be home because their children want to play.

The Big Bot Update:  My son wanted to do something with his father the other morning and wasn’t wanting to wait.   He said in an exasperated tone, “I’m waiting for dad to be done.  He’s reading the newspaper like an old person.”

The Tiny Girl Chronicles:  My daughter is going to miss Sydney very much.   Here they are together earlier this week.

The Trip Went By In A Flash

We’re finishing our packing tonight and getting ready for bed.  My spacebar is acting up and therefore this post is going to be short, as that’s what my patients is right now.   As we were getting ready for bed, my daughter told me,   “the trip went by in a flash.”

It’s been a long several weeks of vacation.   All fun, but all a change in routine. My daughter starts school on Monday so the hectic does’t stop for a few more days.   We leave early tomorrow morning to drive home.

The Big Boy Update:  My son and I were getting dressed for bed together tonight.   He looked over at  me and said, “you have a boob stain.”  I told him the words he was looking for were “tan lines”.

The Tiny Girl Chronicles: Sydney taught my daughter how to make bracelets from little rubber bands.   She really got it at the end of the night.   I have the rubber bands at home, I told her, and she should make more when we got home.

Less Anxious?

Our dog, Matisse, isn’t the most outgoing in certain social situations.   The two weeks of board and train she went to was a benefit in multiple ways.  She is regimented in following commands from people.   The extends to most people, but is strongest with those she has the most experience with, with me being the one she responds best to at this point.

The training gave her stability in her environment and managing anxiety provoking situations as well.   The “place” command which involves her in a down position on a clearly defined small space such as a manhole, picnic table, bench or ottoman, is the strongest and most stable of all her commands.   This week we’ve had people coming in and out of the house here for the family reunion.   These times have brought about wary, cautious or fearful responses from her.   She lacks confidence and resorts to leaving the area or doing a lower volume, “ruff ruff” bark that is fear-based, not dominance oriented.

In these situations I’ve placed her on the ottoman in the living room and had her watch what happens around her.   Every person coming in sees the proverbial, “cute dog” and wants to come and say hello to her and pet her.   She’s not ready to be approached though.   Left to her own devices, she’d retreat out of the room and remain hidden.   Placed on the ottoman, she calms down and lets people approach her—people who always want to give her attention, which she likes under other circumstances.

By having her face her fears in a controlled, stable situation, she calms down and has gotten better through the week.   Two nights ago she was completely fine with people all around her, playing with Daisy, the Golden Doodle who lives here, without concern for the loud voices and many people in the general space.

Her anxiety has hopefully peaked and with continued positive experiences, she’ll begin to be more confident in social situations with strangers.   Daisy has none of these concerns—she’s a people social dog, ready to have everyone greet her.

Daisy and Matisse continue to be best dog friends.   They play all day in the most positive, non-competitive play I’ve ever seen between two dogs.   I’m not a two-dog person, but after seeing them together it makes me understand why some people would want a two dog household.

The Big Boy Update:  My husband has turned on content controls on YouTube on my son’s iPad.   This is due to my son making some poor choices with content options on what he’s been watching.   The result is a very unhappy son, saying there’s nothing good to watch.  

The Tiny Girl Chronicles:  My daughter can, from everything we can tell, not discern colors at all.   She won’t admit to this though.   She told Sydney something unprecedented yesterday though as they talked about colors they liked.   She said, “I remember seeing turquoise…when I could see.”   She contends she can’t remember seeing anything at all.   This is confusing information from her, but it is perhaps confusing to her in her mind.

Is Mom Gonna Die?

We’re into day five of the family reunion.  We have family members from my father-in-law’s side of the family staying in three houses with various gatherings each day.  We’re fortunate enough to be staying at my brother- and sister-in-law’s house, who live in the New Jersey beach town where the reunion is being held.  They’re the hub of most of the activity.   This means the fun comes to us, in large part.

There have been boat and jet ski outings leaving from the dock here with their boat and several jet skis.  My brother-in-law has always loved jet skis and keeps several as well as their boat, moored to the dock on their sound side home.   They live at the end of a channel of houses and the water at their house, known as “the lagoon” is always calm and warm for the that time of the year.

We’ve had dinners at the house here including cookout night and Italian dinner.   We ordered Mexican food one night for those that remained after an outing to the inlet where we went to a sand bar that appears at low tide so the dogs could run around.

Not only do they have the perfect beach gathering house, they also have a Kona Ice franchise for the area.  One evening they brought the Kona truck to their house so we could make our own Konas for dessert.   Today they were doing an event at the ferry about a half-hour from their house.  There was a concert and other vendor trucks would be at the location.   Everyone interested in coming to the concert met over at the ferry bringing blankets and chairs.

We all got in line for more free Kona Ice, my son having four himself.   My daughter, after having two sleepovers with Sydney, her newest best friend, was back at the house for the day.   Both girls had played themselves out and were having unprecedented mid-day naps.   By the time we got to the evening’s event, my daughter had some Kona and fries and then fell asleep on the grass.

This was one of the last times we’d all have Kona Ice—or at least for free—because my sister- and brother-in-law are selling their franchise at the end of the summer, after building the business in the area for many years.

I had two of the smallest sizes, choosing flavors I thought would go well with the sour syrup you could have added to the top for an extra kick.   They changed the formulation of their syrup several years ago to be a combination of cane sugar and stevia, lowering the calorie and total grams of sugar per serving.   I don’t typically have foods with sugar alternatives so when I got in the car and my stomach started hurting—an uncommon experience for my very strong stomach—I suspected it was the stevia.

By the time we got home I was almost nauseated, with my stomach in tight knots.   While I got the bed remade for my daughter to sleep back at the house here, after two days with Sydney, I heard my daughter say to my husband, “is mom gonna die?”

I came into the kitchen and told her I was fine, I just had a stomach ache from what I’d eaten but that I’d be fine in an hour.   I also told my husband I’d figured it out: it wasn’t the small amount of stevia in the syrup, it was the large amount of citric acid I’d ingested from dousing both flavors with the sour shot syrup.

We have two more days of the family reunion before heading home very early on Saturday morning.   The week is going by far too quickly.

The Big Boy Update:  My son had only had Kona Ice for dinner tonight, which is no dinner, so on the way back we stopped at a McDonald’s.   My son uncharacteristically wanted a hamburger.   When he heard we were going to McDonald’s he said, “oh wait, McDonald’s has hamburgers?”  Nana explained that McDonald’s got their start making hamburgers.   My son followed up with, “but now they don’t sell hamburgers?”   We had him look at the menu screen when we got to the drive through, showing pictures of all different types of burgers for sale.   He’s only ever ordered nuggets or strips and apparently has never paid attention to what everyone else has ordered.

The Tiny Girl Chronicles:  Last night was Italian dinner night at the house here.   Thirty or so people were in the house during dinner time—which can be loud, what with all the adults talking in conversations across multiple rooms.   My sister-in-law found me and said my daughter had gone into the formal dining room all by herself for some reason.   When Kelly asked her if she was in there because there were too many people, my daughter said, “definitely too many people.”   Nicole, my niece, went into the dining room and spent time with my daughter, playing a verbal game of hangman, one of my daughter’s favorite games of late.

Too Many Strands

I took my hair down from the corn rows I’ve had it in for fifteen days through the sailing trip.   It was a breeze once I got used to it.  I didn’t have to wash it other than to rinse it off in the shower.   It didn’t frizz up, it was never in my face or food and was about as zero maintenance as twenty-inch hair can be.  

But it was time.  Yesterday evening after coming in from the boat and before dinner I got in the shower with a large bottle of conditioner and started the process of undoing the braids.  It was slow going but I’d learned some tricks for speed and success after removing my daughter’s braids in January from our family holiday trip.

I would run the water, slather on some conditioner, turn the water off, work on the braids with my fingers and a brush.   Repeat.  Repeat.   By the time I had all the braids out my dinner was cold and everyone else plates had been cleaned up.

The thing that was shocking, saddening, heartbreaking was the amount of hair that came out in the process.  Even factoring in ten strands of hair per day of natural fallout due to the cycle of hair growth humans have, it was far too much.   Possibly the tightness of the braids that had been done played into the amount of attrition.   Still, it was too much.

I have slow-growing hair.  I’ve been “growing my hair out” for at least five years now and I can barely keep up with the minor trims reluctantly agree to have every three months.  Sue, my stylist, laughs at me when I bemoan an inch of hair being cut off.   It has to happen though as the hair at the bottom is over three-years-old and even with the care I take to protect it and treat it well, I can’t go without an occasional trim.

So the mass of hair I have now in a ziplock bag (yes, I saved it, it was that sad) is hair that all has to start at my scalp and grow out for another three years to get back to length.  Maybe it’s what I would have naturally lost during that timeframe, but I don’t think I’ll have my hair braided like that again.   On the up side, I don’t have any future plans to need to have it braided.   That, and at some point I’m going to a short hair style.   Well, shorter, for me.   I’m not sure when I’ll have the nerve to make the change, but it’s going to happen someday.

The Big Boy Update:  My son has been in the land of screens for a huge portion of our trip to New Jersey.   He doesn’t have anyone his age to play with, and when we do family things he gladly takes a break.   He’s going to need a serious detox when we get home though.   Today during one of his breaks he was talking to Kyle in the living room as we discussed what meal plans were for the day.   He told the group, “Kyle needs to work out more, he’s getting thick.”   Fortunately, Kyle wasn’t offended.   He laughed along with everyone else.

The Tiny Girl Chronicles:  My daughter has become very interested in learning some origami models.   I taught her how to make a cube out of six squares of paper.  She folds the sheets and I connect the cube.   She’s working on accuracy and is increasing in skill rapidly.   She also memorizes the models quickly, which helps.

Where We Went

My husband has an uncanny memory.   Unless, that is, we’re talking about a discussion we had in which I was right and he was clearly wrong.  In those cases my memory is flawless—or so it seems to me.  

He’s been working on some tactile maps for my daughter to show where we went on our sailing trip.   He hasn’t finished her maps in part because we arrived at the family reunion and have been occupied with family, but also in part because he got engrossed in the some more detailed “seeing” maps to make sure he had everything down there first.   Here are those maps, including how we had to tack back and forth as we made our way towards some of the locations:

We picked up the boat in St. Thomas, headed to St. John, then we made the longer trip to St. Croix, spent several days there and then returned to St. Jonn and finally returned to St. Thomas to return the boat on the tenth day.



St. Thomas, with our final, return path shown in red for the end of the trip:



St. John, the second island we visited and spent several days at both on the outbound and return sections of the voyage:



St. Croix, including Buck Island, which was about the most idyllic tropical mooring spot I’ve ever seen.  



The Big Boy Update:  My son met Ryan, our cousin, who is a professional dancer and choreographer.   He’s been talking about Ryan for months now but when faced with meeting him in person, he became very shy.   He was starstruck.   Ryan gave us some advice on what to do to facilitate and encourage my son if his interest in dancing continues.

The Tiny Girl Chronicles:  My daughter is over at one of the other houses tonight, having a sleepover with Sydney.   Their best friend status continues.   They get along so well.

In The Lagoon

Today those who’ve come to the family reunion are getting together at the house we’re staying at for a gathering and dinner.   The adults have done a lot of talking and catching up while the children have gotten together with their own age/peer groups.   My daughter is very happy to be spending time with Sydney, her cousin.

They haven’t met before, but they were instant best friends.   They’ve been inseparable since they met last night.   My son has been doing a lot of screen time, something we’re trying to control, but he doesn’t have a peer he can play with and he’s enjoying spending time alone with games and YouTube channels about the games he plays.

It’s hot here.  We’re in the middle of a heat wave that’s breaking temperature records.  In order to cool off we all got in the lagoon at the back of the house.   Daisy, my brother-in law’s family dog, loves to swim in the lagoon.   She has a small dog life vest.   My mother-in-law got a similar one for Matisse.  

Matisse wasn’t too sure about the water, although she was interested.   She got put in the water several time, was put on a paddle board with me and looked like she wanted to go swimming when people called to her, but she just didn’t know how.

She’s had a rinsing bath now to get the salt water off her and is now lounging on the air condoning vent to cool off and get dry.   I’m hoping by the end of the week she’ll be happily paddling around the bay just like Daisy is.  

The Big Boy Update:  My son didn’t want to get in the water today.   He said the big kids were teasing him and it made him feel stupid.   I think they were just trying to encourage him to get in the water, but he took it very personally.   He got over it and is still in the lagoon with them now.

The Tiny Girl Chronicles:   My daughter just loves her new friend Sydney.   She is a year older and has been loving being the leader in the games they play.   Sydney is such a sweet and kind friend.   She seems to inherently understand what to do to work with my daughter’s blindness.   They have played completely harmoniously since last night.   I hope Sydney can spend a lot of time over here this week.   It’s been a very fun family reunion for my daughter so far with her here.

Escape the Room

We sat around the dinner table and did a good number of riddles while we were together on the boat.   Someone would pose the riddle and then  we would jump in with questions to try and figure out the answer.   If you figured out the answer you didn’t say it out loud, you’d just let the group know you’d got the answer and then sit back while the other people tried to figure out the catch.

Riddles were fun but we moved into a more complex version of these mental puzzles.   The children had heard of several of these “escape the room” type of puzzles.   Andrew and Julia had a couple of these and my son had some too.

They’re fun in that you have an initial setup such as, "you’re in a locked room that’s completely dark.  How do you get out?”  You can ask questions and make requests, such as, “feel around the walls and see if I find anything.”   You find out there is a door on one wall and a light switch on another wall.   So you ask to flip the light switch and see what happens.  In this case, the room lit up.   In another scenario, nothing happened.

Lots of times there’s a catch to figuring out how to get the key and get out of the room.   Other times there’s a series of steps to figure out, making it more of a puzzle to solve incrementally instead.

We exhausted the escape the room riddles fairly quickly but that didn’t stop my children.   They made up new ones on the fly.  My son is good at this, but my daughter is truly amazing.  And I mean that in the real sense of the word.   I’ve done a bunch of these with her since we first did them on the boat days ago.   Every time she comes up with something totally unexpected.   The kinds of ideas adults can’t make the leap to because we’re set in our ways of how the world works and we’ve lost the ability to imagine any possibility.

Her ideas are just that good.   They’re the kind if right turn from reality type of thing that you see in a movie or read about in a book and appreciate the person who came up with it because it makes the experience something more.   I may be overselling this a bit here, but I’m her mom and I was impressed for sure.

If you’re interested, my daughter will play this game with you, being the “Room Master”.   Which I suppose is sort of akin to the Dungeon Master in D&D (Dungeons & Dragons) from when I was young.   My daughter will start you off in a room.  She’ll put in some interesting twists, but all the information is there to find the key (or dynamite or other alternate exiting item) and get out of the room.

Only this is my daughter we’re talking about here, and she’s never done if you’re talking and interacting with her, which means you find yourself in another room.   This can go on for many rooms.   It’s pretty fun to play with her; I need to start writing some of her ideas down.

The Big Boy Update:  We’re in the car going to New Jersey now.   My son sometimes experiences motion sickness—especially when he’s doing screens.   Today, after ten days on a sailboat that never stopped rocking, he’s been on his iPad for hours and is completely asymptomatic.

The Tiny Girl Chronicles:  My daughter is having difficulty being patient, grateful and polite.   I am hoping it’s age appropriate because my husband and I are trying to raise polite, well- behaved children and right now I fell like we’re failing with both children.   Today in the car my daughter had to wait while everyone else had snack around her because she was rude to her father, demanding food immediately, while he was getting the car back onto the highway.   It started as ten minutes but she persisted in being defiant as well as insulting to both of us.   When she got three penalties in a row (she was hungry so making holding back food was a high value consequence art the time) she finally relented and turned back into the nice version of herself.

Lyrica

I fell asleep last night.  Okay, not last night, six o’clock in the evening.   I woke up after midnight, had some limeade, let the dog out and went straight back to sleep.   We got in from our sailing trip Thursday night late, after midnight.  I went to sleep late, even though we didn’t do much in the way of unpacking and repacking for the family reunion we were leaving for in thirty-two hours later.

After my in-laws left from bringing us home from the airport, we started laundry, got the children in bed and found the necessary things we needed for the night like device chargers, tooth brushes, etc.  Before I knew it it was three in the morning.   It didn’t help that I was back up at six o’clock to get started on my long list of things to do before we left the following morning.

Given all that, I’m not surprised I fell asleep when I took a few minutes to lie down and check email. But there’s another factor that could be in play, making me comfortable enough to fall asleep easily.   To explain why I need to delve into some back story first though.

I have a spinal cord injury.   That’s simplifying it, but that’s what I tell people if it comes up, because it’s succinct and conveys I’ve got pain without going into a long explanation.

The elevator speech for what I have is that I likely broke my neck as a child and no one realized it.   There are multiple events that are suspect in my mind, but at this point, we’ll never know.  Based on when symptoms began to appear, it was likely in my early teens.   My neck healed improperly and over time I began to have symptoms.   Without having anything formally diagnosed, I had different treatments for the symptoms I had, which only increased over time.   Eventually I had the full extent of the damage and degeneration diagnosed and shortly after that had the first of two spinal fusions.

Surgery made things a lot better, but there’s no real fixing the situation and making all well.   Degeneration has continued, which is what I was told would happen.   I was thankfully medication-free for the five years surrounding having and nursing my two children.   It just worked out that way with timing, but I am very grateful that it did.

I’ve had to add back medication slowly over time, fighting it the whole way.   My fear is that anything I begin taking now, I’ll be stuck with forever.   Maybe another surgery could help, but much of the damage is where the existing fusions are and the next step will like be fusing more vertebra, making me sort of Frankenstein like with much reduce ability to turn and bend my neck.

What I started taking about six years ago was Lyrica.   It’s a nerve medication that significantly reduces the constant nerve burning sensation I have in my neck, arms and upper torso.   I started on a low dose but over the years we’ve had to increase it to combat the increasing nerve pain.

All was well with the Lyrica until we had to change insurance companies this year.  We’re self-employed as real estate agents and are limited to companies and plans available on the marketplace. In order to keep the network of Duke providers, we had only one choice.  My daughter and I both needed to remain with Duke.   So we switched.

If you’ve done this before (and most of us have) the new insurance company puts you through the prior authorization process for a lot of things.   It doesn’t matter that you’ve been on a medication for years.   It doesn’t count as a “need” just because your provider prescribed the medication for you.   It’s a process, I know, but sometimes it takes a long time to work through.

I was due for a refill of Lyrica on January 25th.  We’ve been trying to get the Lyrica approved since early January.   My primary care provider tried for a bit but I transferred care to a spine specialist in February and they took over the process at that point.   I had some extra medication I used for a bit, then they put me on samples.   I got a lot of sample packets for a while.   We kept thinking we’d get it solved, but the insurance company wasn’t budging.   Or, rather, they had requirements we needed to meet.

One of them was I had to try an alternate medication.   I’ve been on Gabapentin for several months now.  It is also a nerve medication, but it doesn’t work as well for me.   We’ve had to increase the dosage to quite a high level, and it still isn’t knocking back the nerve pain like Lyrica did.

It sounds easy, getting the right information to the insurance company so they’ll approve the medication you were already taking and needed.   I could write a week of blog posts on everything we did that we though would work, but didn’t.   This post is already long and wordy enough though, so suffice it to say, everyone was doing their part, trying to get the Lyrica approved,

Yesterday my phone rang with an unknown local number.   It was Lawrence from the spine clinic.   He knew I was in for only one day between trips but he’d been working on things while I’d been away.   He told me about a long phone call he’d had with the insurance company, going over all the additional options they might have made me try that either I’d already tried years ago or wouldn’t work for me based on other criteria.   At the end of the call she said, “it sounds like she’s a good candidate for Lyrica.”

Lawrence told me to start the Lyrica today, using the last bit of samples I had, and when I saw him at the end of the month the prescription should finally be approved.   (The prescription I’ve had the pharmacist try to fill at least twelve times by now.). I hung up, after gushing excitement and gratitude to Lawrence, and ran to tell my husband.

Last night I started the Lyrica.   Today is a good day.   There have been a lot of difficult days over the past few months with nerve pain that’s not well-controlled.   I’m hoping there will be a lot more good days in my future.

Now, when you read this pretend I posted it last night and not in the car this morning.   You know how I hate missing writing a blot post…

The Big Boy Update:  My son was talking to me yesterday as we left the Chiropractors office.   I am not even sure what he heard when we were there but he made me laugh when he said, “I don’t know why, but that reminds me of the word ‘puberty’."

The Tiny Girl Chronicles:  I was talking to my daughter as I packed yesterday.   I told her I was packing her things for her but when she got older she’d be able to do it herself.   She said that reminded her of a dream.   In it she had an “age spinner”.   You could spin it and whatever number came up would be your age.   She had turned it to sixteen because she said she really wanted to be sixteen.

Winches and Lines

I write this blog post in a vacuum most of the time.  It’s a diary in its own way, a collection of my thoughts written down, a solo endeavor, not a collaboration.  But it’s not a diary in that it’s published daily and people read what I’ve written.   I’m still and will probably always remain touched that people read this blog, spending three minutes of their day, reading about mine.   That being said, it’s fun knowing I have an audience.   It makes me work harder to make these posts more than a mundane detailing of our day.

I’m bringing this up because I get feedback from time to time on what I’ve written.   Yesterday’s feedback came from my shipmates (boat mates?), in particular, my husband.    He was reading the how to sail post from yesterday and he told me I’d made a grievous error.   There are no “ropes” on boats.   They just don’t exist.   If you see something on a boat and it looks like a rope, don’t make the mistake of calling it that.   Saying something such as, “did you mean this rope over here on the right side of the boat?”

Bad form, minus two points, go to the back of the class.   What you meant to say was, “did you mean this line over here on the starboard side?”   I was going get my computer and update the post last night but it was after the daemon had sent an email out to people who have signed up for email updates of the blog.   I’d do it in the morning, I told my husband.

This morning I found out my husband had been an incomplete editor.   Alice told me the things the lines wrapped around weren’t spindles.   They were winches.   Of course they’re winches, ugh.   There’s a crank handle and they winch the lines around them.   With those two corrections, the post on how to sail is mostly complete—with one exception.

The exception is a fairly large one.   There’s a whole component of sailing I didn’t cover at all yesterday.   Mostly because I was waiting for a picture from my husband that only he could get because he has a camera that can go underwater.   I needed a picture of the underside of the boat so I could finish my How to Sail 101 explanation.   Because sailing doesn’t just happen on the top side of the boat.   Those winches and lines do the job, but they’re orchestrated by what happens under the boat.

Here’s the picture my husband took.   He’s at the front of the boat.   You can see the two catamaran hulls and the large open area between them.   In the back you can see the two props (propellers).   The one on the right side of the picture (or to be technical, the port side of the boat) is shiny and new if you remember that it fell off and had to be replaced the second day into the trip.   You can also see the ladder we use to climb back onto the boat when we’ve been out swimming, snorkeling, or going to Lime Out for more tacos.



When we’re not sailing under wind power, the boat is moved by those two props you can see.   They might look small, but they’re very powerful and move the boat at a good pace.   The last thing I want to point out are the rudders.   There is one on each side a bit in front of the props.   They’re at different angles in the picture with the one on the left almost perpendicular to where the camera took the shot.   You can get a sense of the shape of the rudder from the one on the right.

The rudders are key.   Hoisting the sails, filling them with wind and tacking the sails to adjust for changing wind is the plan.  The sails move the boat forward.   The rudders turn the boat.   And those two little rudders can turn this big forty-four foot boat fast.

Here’s an example:   we’re sailing in the general direction we want to sail to get to a cove to anchor for the night.   Only the way we’re sailing with the wind filling the sails is heading us directly into the rocky cliff face of the island up ahead.   No good.   We can’t solve this with sails alone.   So the captain calls out, “ready about”.  We prepare the lines and winches and call back, “ready about aye”.   The captain steers, using the rudders, and the boat begins to quickly turn.   We adjust the sails to catch the wind and now we’re sailing away from the rocky cliff, on the next phase of our zig zagging path towards our destination.   We’ll do this procedure multiple times, taking best advantage of the wind, to get us where we want to go.   That zig zagging is part of the, “we can’t get there from here, but we can get there from over there…and we’re headed there now.”

The Big Boy Update:  My son has done a very good job of eating this trip.   He’s hesitant to try any fish, which we concur with now that we know he has fish allergies to a lot of common fish.   He’s been up for anything and everything else.   He’s tried a lot of new things, been flexible on food and has enjoyed a good bit of it.

The Tiny Girl Chronicles:  My daughter has barely moved in two days.   She gets up and participates when we’re doing things like swimming or eating, but she has no interest in anything else in the whole world, save for the Harry Potter audio book she’s listening to.   She finished the third book last night and is now listening to the first book that she elected to skip initially.  

How to Sail 101

Yesterday I learned how to sail.   You would think I would have learned by now, what with today being our last full day on the boat before we unload and head to the airport tomorrow.   My husband and Alice had done such a good job learning the mechanics of sailing this Fountaine Pajut Helia 44 Catamaran on the first day, honing their skills during the following days, that I just hadn’t asked if I could learn as well.

It’s not hard, mostly because this boat is so nicely set up to sail.   I had visions of us all running around deck, all the time, moving ropes around, messing with sails, doing sailing things.  Maybe on some sailboats.   Maybe on old sailboats.  This sailboat is controlled largely from one point just in front of the helm:

See the ropes and the spindles they’re wrapped around?   That’s where the action takes place.   You hoist and lower the mainsail, furl and unfurl the jib sail and tack the jib sail from right there.  It’s all about pulling in or letting out the ropes.  

This is a closer view.  Two people stand here.  The left position controls letting out the needed rope in a controlled fashion.   When the captain tells us to prepare to tack, we get ready.  The cleat holding the line steady is released.  Then, when the captain says, “tack”,  the left line is played out while the line on the right spindle is pulled in.   

The right spindle pulls in the line under power.   When you’re trying to move a sail into the wind you don’t have the strength to control the rope by hand.   You can’t overpower wind that’s moving a forty-four foot boat through the water.   There is a black button at the very right side of the picture.   That controls the right-most spindle.    While your partner is playing out line, you’re pulling in under power.  

There are variations on that process depending on what sail you’re working with and what you’re doing with that sail, but that’s pretty much it.  For each sailing maneuver, you change up which ropes are on the spindles, depending on what you want to do.   Excess rope drops into the basket below the spindles.   The majority of sailing tasks are controlled primarily from this one point.   Pretty cool, right?   

There are two sails on this boat.   The jib sail, when not being used, is wound up around its pole.   Here’s a picture of the bottom of the jib sail.   See the black line coming out of the spool at the bottom?  That line goes around and up to the control area where you can unroll it, roll it back up.  There are two more ropes not visible here that are used to move the sail left or right (or tack) in order to maximize the wind hitting the sail, which makes the boat move more quickly through the water, which is what sailing’s all about.

Unrelated to sailing, here’s the trampoline.   It’s pretty bouncy.  There’s nothing but water directly below it.  It’s a fun spot to hang out any time, even at night, looking up at the stars. 

Back to sailing.   This is the mainsail.  We’re anchored this morning so my picture of the sail is in its stowed position.   It’s in a zippered bag.   When you put the sail up, see the picture below shows where the sail goes.   From the control point, the appropriate rope is put on the right spindle and then the button is pushed to pull the heavy sail up the mast.  When it’s time to put the mainsail away, you do the reverse.   For this you do need extra hands to stow and un-stow the sail from its bag.   Standing on the very top of the boat wrangling a sail into a bag is fairly invigorating. 

Today we’ll be heading back to St. Thomas.   We’re finishing up food and supplies, pulling the luggage out of the hold it’s been stored in for the duration we’ve been on board and get to packing this evening.   Knowing me, I’ll start packing earlier.

The Big Boy Update: My son wanted an app for his iPad because Andrew has it.   It was large to download and then it had eleven more downloadable files once we launched the game for the first time.   I had a hard time getting him to understand that we don’t have much data to use on our cellular plan while here.   He offered to delete apps on his iPad to make room, told me we could get on wifi and that wouldn’t cost anything and that we could use Andrew's data plan maybe?   He was trying so hard to come up with a way to be able to play the game.   It requires an active connection to play so we told him he’d have to wait until the airport tomorrow when we had connectivity via their WiFi.   

This morning he came over excitedly and showed me how he’s been playing the game.   There is this thing Apple does to be nice: if you connect one device of yours via a hotspot you make available on your phone, you get the bonus feature of all your devices connecting through your phone—whether you want them to or not.   I explained to him he could play, but as soon as I was done with this blog post, his connection was going with it.   It does look like a cute game.   I told him I’d have to download it and play with him when we got back to the US and had unlimited data

The Tiny Girl Chronicles:  My best friend got us the Harry Potter audio books for the trip.   My daughter hasn’t been interested until yesterday, when I got her to try it just for a bit.   She didn’t want to listen to the first book on account of they’ve seen that movie multiple times so she started with the second book.   She became engrossed, finishing The Chamber of Secrets and starting on The Prisoner of Azkaban after dinner.  It was very sweet though when she came to find me when she got to a scary part at the end and asked if I’d listen to it with her. We ended up playing the book out on Andrews speaker and everyone got into listening for a while before bed. 

The Cycle of Ice

We made it back to St. John yesterday afternoon.   We had planned to go back to Lime Out for another floating meal but the restaurant wasn’t there so we headed over to Maho bay, connected up to a buoy ball, and moored for the night.  

There is a lovely beach swimming distance from where we were parked.   My son wanted to swim to shore.   So did my daughter.   It’s not a long swim for an adult, but you know what it’s like when a child is suddenly tired and can’t (or won’t) go any further.   Having to drag a child back to shore wasn’t something we wanted to contend with.

But both children did fine.   They were excited to get to a beach (we visited this same beach coincidentally when we were here in December).   I stayed back on the boat.   I had had a nap while we crossed between islands and there was a lot to get done.   The kitchen is in constant need of being tended to with dishes appearing in the sink magically every time you think you have everything cleaned up.

My daughter had wet the bed again the night before and since we don’t have linen service on the boat we had to hand wash and dry everything.   The beds aren’t rectangles.   They’re actually hexagon shaped with the head and foot of the mattress less wide than the center of the mattress.   It maximizes mattress coverage in the room.  But making the bed is two sides of extra fun.

I was content, being alone on the boat getting things cleaned up.   I present as an extrovert and most people would think I was heavily on the extrovert scale, but I prefer to be alone and by myself a good bit of the time.  When everyone returned things were shipshape.   Wait a minute—that term is technically applicable here.   I’ve never been able to use ‘shipshape' for it’s actual denotation before.   How cool is that?

Back to the traveling around on the boat, otherwise known as sailing.  two days ago dolphins found us again.   They seem interested in the humans on board.   They were swimming around and under the boat.   They came up for air so close to the bow that we could hear their splashing and blow hole sounds.   My daughter and I came up and sat on the bow with our legs hanging off the front.  We listened and I told her what they were doing.   She happily talked to the dolphins until they headed off on their way.

When we boarded the boat eight days ago we brought with us a large cooler full of ice.   We put drinks and water in the cooler, using it as an extension of the refrigerators on board.   We didn’t expect to have the ice last long and would likely have to buy more at a port in a few days.

At this point, eight days into the journey we haven’t bought more ice.   We’ve been pleasantly surprised by a little appliance on the counter that makes ice.   It’s a small, plug-in ice machine.  We didn’t expect much from it, but it turns out this little box churns out ice at a fair clip.

We take the ice when the basket is full and dump it in the cooler.   Then we open the valve at the bottom of the cooler to get the water from the older ice that’s melted.   By adding melted ice water into the ice machine to make more ice we have a cycle of ice going.   Everyone likes the little ice machine and reaches in to get ice when needed for a drink.   We’re losing ground slowly on the cooler ice level, but we’ll make it the whole trip without needing to buy more ice.  The shape of the ice is fun, you can put it on your fingers:

The Big Boy Update:  I feel for my son.   He’s gotten in trouble multiple time to a fairly serious degree.   As a result, he’s gotten a lot of negative feedback from my husband and me.   He’s trying to counter the impact to his self-image and psyche by being, “cool” in whatever manner he thinks makes sense.   He’s also lashing out in some cases, being mean to his sister because he’s unhappy himself.   Some of this vacation has been very hard on him.    I told my husband we need to focus on the positives with him.   We need him to feel like he’s understood and that we’re proud of him in any way we can show.   He just wants to be liked.  He’s been very mature in many ways on this trip.   I don’t want to lose sight of the positives and let the negatives be what he remembers.

The Tiny Girl Chronicles:   My daughter had come back to the boat from swimming to shore and playing on the beach.   When she’s out in the water she wears some goggles in place of her glasses.   She is almost never without her glasses on her head.   They get pulled down around her neck when we do drops or to clean them.   The glasses do very little for seeing, but they protect her eyes.   Yesterday as she was drying off on the deck without anything on her face she asked me, “have you paid for the eye game?”   I had no idea what that was, I told her, and then she showed me.   She opened both eyes and rolled them around.

This, in and of itself, is very interesting.  We rarely get to see her eyes point straight forward.   She rolls the right eye upwards most of the time.   The left eye she has a hard time facing fully forward, which we need to get a pressure reading.   So when she looked at me and rolled her eyes around and then did her best to look at me I clapped and encouraged her to do it again, asking if she could do different things.

My goal was to get a full view of her right pupil.  When I was able to see it, my heart sank.   I know the right eye doesn’t see anything, but I suppose I was hoping for stem cells or some of the regenerative medicine Dr. Trese is planning, to give her eye a chance to see something.   Her right eye has shrunk some and the pupil is unrecognizable.   It’s almost like it’s being resorbed by the eye.   It was awful to see.    It doesn’t hurt her though, which is the only positive thing I think I can say.

Buttons and Screens

We’re leaving St. Croix now to return to St. John.   The legs of the trip sailing between these two islands are the longest.  We’re in the deepest water (over 10,000 feet), there are larger waves and the boat does a lot more rocking.   My husband and son felt nauseated on the way over, they’re taking something now so that by the time we leave the marina after fueling up, they will hopefully be asymptomatic.

The helm of the boat is up high on the starboard (or right) side.  The steering wheel is big, there’s GPS map screen and other smaller screens with associated buttons on them.   There’s a compass and throttle sticks.



The boat can be put into autopilot.   You tell the boat which direction you want to head and it keeps that course heading as best it can.   Because boats travel on water and are subject to wind and water conditions, the autopilot corrects as needed to reach the desired destination.

And this means you can do an interesting thing.   Well, I’m certain there are gobs of interesting things you can do on this boat, this is just one Richard explained to me.   He had autopilot turned on.    He took the wheel and turned it counterclockwise.   The boat started to turn.   we turned about an eighth of a turn.   When Richard let go and stopped turning, autopilot eased the boat back onto track.   That means if you need to steer around an obstacle, you could do so with ease.   And that, I find cool.

That ship's wheel doesn’t function like I expected it too.   You can steer the boat by turning clockwise or counterclockwise, but its easier to look at the screens, see what direction you’re heading in degrees and then press buttons indicating how much you want to change your course.  If you’re  sailing at 24° and you want to change to 34° you’d press the +10° button and the boat steers itself to meet the new heading.   The ship’s wheel isn’t even needed most of the time, it’s all buttons and screens.

My husband has become much more of a sailor than I have.   He knows what to do for raising, lowering and he knows the various procedures for mooring, anchoring or connecting to a buoy.   He’s been helping and learning since we boarded.   I’ve done some, but he’s really taken to it.   I don’t know if we’ll ever have an opportunity to go on a trip like this again, but it’s something new and different for all of us.   It’s definitely been an adventure we wouldn’t have had without Richard and Alice inviting us.

Last night we went to our one dinner out while on the boat.   The restaurant had a lovely atmosphere with seating all open towards the beach.    Everyone enjoyed their food.   It was getting there and back that was the challenge.  We anchored for the night near the restaurant.   We had two short trips in the dinghy to get us there.   The only way we could approach the restaurant was at the rocky small beach at the rear of the building.   I put everyone’s shoes in my bag and we all jumped in when we got close enough.   Our feet were a mess of dirt and sand by the time we made it to the side of the restaurant.   Fortunately there was a hose we could wash our feet of on.

After the rest of us arrived in the Dinghy and we all had our feet washed with shoes back on, we were seated and all ate too much.   Getting back to the boat turned out to be messy.  It was dark and the beacon light at the top of the boat wasn’t visible until we got closer.   The wind had kicked up causing the dinghy to be more like a waterpark ride for people who want to get splashed.   Back on the boat, everyone showered and fell asleep full.    We return to St. John tomorrow.

The Big Boy Update:  My son is having a hard time.   That’s not to say he isn’t having a great vacation, it’s just that he’s in a repeating cycle of getting in trouble and then directing his frustration by taking it out on his sister or pushing boundaries hard with my husband and me.   Underneath it all, he wants to be liked and understood.   I’ve explained a bit to Andrew and Julia who are much older.   I’ve talked to my husband and we’re going to see if we can stop with the negative feedback from us.   The more “in trouble” he gets—which is constantly—the more he needs someone to be his friend and accept him.   That, alone, will calm him down.   I was his buddy at dinner last night.   He was great.

The Tiny Girl Chronicles:   We’re heading to the marina now that has the very social and socialized iguanas.   My daughter was petting one the other day and then got nipped by it.   We all explained to her it wasn’t trying to hurt her.    I’m hoping the iguanas are there this morning and we can go back and pet them again.   They have a different feel than other animals and feeling is what it’s all about for my daughter.

sdfsd

Dunnage

Let’s talk about toilets on boats today.  Contain your excitement, I know you were hoping I’d get to this topic.   It’s the same but different and those differences are important.  The same parts are that toilets look the same, so there was no retraining on how to go.   It’s what happens after you go that’s where the difference lies.

The toilets are filled with sea water, which means there’s an unlimited supply of water.   That’s good because you can only use four squares of toilet tissue per filled bowl.  That sounds scary right?   What if you need more than four squares?   Not to worry, you have as many flushes as you want, with each flush being eligible for another four squares of tissue.

Here’s how the toilets work: there are two buttons, one to empty the toilet, the other to refill with sea water.  When you flush the toilet everything goes down the pipe towards a holding tank.   In order to ensure all wastes make it into the tank and out of the pipe below the toilet we’re doing three fill/flush cycles.

Those steps get all the waste products safely stored in tanks.   These tanks fill up so the next step is emptying them.   There are Coast Guard regulations on how far out to sea you must be before opening the dunnage valves so the holding tanks will empty out into the ocean.   Every time we get to appropriate distance, Richard calls out, “open the dunnage valves” someone goes below to the bathrooms and turns these handles a quarter turn:

The valves are in the shower.    Standing in the shower and facing out is the rest of the bathroom, including the toilet and the two buttons to operate it:

 

If your above deck when this happens, you can see the “dunnage” escape out the back of the boat and then disappear quickly as we sail on.

When we did the initial inspection of the boat Richard and Alice noticed something they didn’t like at all from a safety perspective.   There were these lovely ports at the very bottom of the two fore bedrooms.  My children would be in one of these rooms.  Here’s a picture of the port as we’re under sail:



It’s right at the bottom of the boat and it’s not just a viewing port, it’s openable.   Here’s another picture looking out, where you can see the other portal on the other side of the boat.   This portal is almost in the water.   Why, I ask you, why is this thing even possible to be opened?



Yes, yes, there is a nice warning on it, but if someone opened it while we were under sail, when water is pounding against the window, the ship would take on water—fast.   Other, similar boats from the same company had portals lower down, but not openable.

Richard wasn’t taking a chance, even if it was a safety thing for the rare and highly unlikely probability that the boat was capsized and we needed to get out and couldn’t get to the other two openings within six feet in the same room.   He zip tied the opening mechanism for the duration of the trip.

My last topic this morning is about a kitchen feature I really like.   I like it so much I would consider adding it into my kitchen at home if we were still building our house.    Here’s a picture of our kitchen.  It’s very functional.   We’ve eaten most meals on the boat including pasta, chili, sandwiches, eggs & bacon, lots of toast, hot dogs and, of course, more pasta.



Notice the round circle inset into the left side of the countertop?  It opens up to the trash can below,   No need to open and close the trash can door fifty times while you make a meal and clean up.   Just leave the lid off and drop everything in:

That’s it for updates today.   We’re anchored at Buck Island today and plan on going to the beach and exploring.   We’re going back to St. Croix for a dinner off the boat at a real restaurant tonight.  It’s our first time eating off the boat since we boarded on the 8th, seven days ago.

The Big Boy Update:  Two nights ago my son slipped away from the dinner table.   We were taking turns giving riddles to the group to try and figure out.   My son snuck out to go to his room and play on his Nintendo Switch.  When I went to find him a while later (and to take away the video games he shouldn’t have been playing) he came upstairs and said he was hungry.   I put some pasta in a bowl and I sent him back out to the table where most people were still talking,   He came right back in, complaining that the food was cold and could I warm it.   I told him no, but he could warm it himself, that it had been hot when he left the table.

He was angry.   He pouted and stomped fully around the top side of the boat.   Andrew said when he got back, “what are you complaining about?  You did this to yourself.”   My son got his bowl, came inside and asked how he could heat his food up himself.   He had to put Saran Wrap over it first, which he had trouble with, and then he had to move things out of the way to get to the microwave in our very small kitchen. Then he wasn’t tall enough to reach the microwave easily.   He said in an exasperated tone, “how do you adults do all this?”  I told him we did it every day and we always appreciate a thank you for taking care of the family.

The Tiny Girl Chronicles:  My daughter loves to help.   Anything purposeful she can do in a world where she has to ask everyone else to help her is a good thing.   She feels useful.   She knows something other people don’t and she can contribute.   I relocated the water supply to a new, more easily accessible location on the boat yesterday and my daughter helped me with the move.   She hadn’t know where the water was stored before, but now that she does, she’s been asking people if they need any water and bringing them some if they say yes.   She has a such a strong desire to help and be useful.

Dolphins

There’s a lot to write about on this trip.   Things are different than boring days at home.   We’ve got new and exciting experiences.   This post is a collection of mini topics.  There’s just too much to write about.   I’ve been writing my post in the morning instead of the end of the day like I do at home.   The boat is a hard place to find a quiet corner to write at a table.  Mornings with coffee on deck with a nice breeze make for great writing.

Satellite:  Two nights ago after having floating tacos we had gotten back to the boat and were finishing up things, getting ready for bed.   My children were pushing back on everything.   If you know me, you’ll know what I mean when I say I lost my temper at them.   Richard and Alice had been up on the bow, relaxing on the trampoline mesh area, lying back and looking at the stars.   Richard came back where I was and told me to come with him.   If you know me, you’ll also understand when I say I wasn’t having any of it, I was mad.   Richard was trying to help, I knew, so I said something completely ungracious like, “fine, but only for five minutes.  I’m tired, in pain and I want to go to bed.”

When I got to the bow Richard and Alice told me what they were looking for—satellites.    The sun had set for us, but the sun would still be shining on any satellites as they were higher in orbit.  That meant we could see them as they progressed across the sky.   We chatted while we watched and sure enough. in just a few minutes Alice spotted a satellite.   We watched it cross the span of the night sky in a single minute.  Richard said if we got in a theoretical car and drive straight up at seventy miles per hour, it would take us seventeen hours to reach the height of the satellite.     Guess what?  I forgot all about being cross at the children.   I told Richard thanks for insisting I come to the bow, it worked, I was reset.

Heavy Burden:  Richard is our captain.  His knowledge and skills about sailing are extensive.   But being the captain is more than just knowing how to sail.   He bears the burden of making all decisions and taking responsibility for all consequences.   He does this with firm authority, directing the adults with jobs to perform.   He also deals with my children who want to have fun and don’t understand sometimes they will have to be bored in order to be safe while we’re under sail.  Our children know when the captain tells them something, they must comply without negotiating or questioning.   This is to keep them safe.   My children are pretty good at this but if they forget, Richard uses his captain voice which, in tone alone, commands.

Man Overboard Drill:  Yesterday we did our man overboard drill with all hands on deck.   The adults had been given a walkthrough a few days before by Richard.   Yesterday we did the real thing. Our “man” going overboard was Andrew’s life jacket.   Here’s what we did:

1. Someone notices the someone has fallen overboard and yells out, ”man overboard!"
   
2. Everyone who hears the cry responds as loud as they can, “man overboard!”
3. If you have a a visual on the person (vest in our case) don’t take your eyes off of it.  Point at the vest with your arm.   Don’t waver from this.   The captain is using your non-verbal communication to know where the vest is. 
4. The captain will seemingly be doing nothing and saying nothing.   The captain is actually very busy.   The first thing he does is mark a waypoint on the navigation system when the man overboard call came out.   The captain’s job will be to move the boat back to this position as quickly and safely as possible.
5. While the captain is maneuvering the boat he or the crew will pull in the Jib sail.   He’ll direct crew if he needs help with this. 
6. Everyone else keeps pointing and looking at the vest (or person).   Move to the highest point on the boat for better visibility as long as this doesn’t cause you to lose sight of the target.  
7. If you lose sight of the vest, keep looking, but drop your pointing arm.   This can happen with big waves that can block visibility.   If you see the vest again, put your pointing arm back up.   The captain can look quickly around the boat to see if the crew is keeping watch on the overboard.   He can focus his attention on navigating back to the waypoint and factor in change in location based on current by where people are pointing. 
8. Hook the life vest or throw out a life preserver for the person when we get back to them. 

That’s the highlights of the procedure.  Yesterday we were moving at a pretty fast clip under sail when my husband threw the life vest overboard.   Everyone did their jobs and in a faster time than would have guessed possible we were hooking the life vest back on board.   Richard said, “congratulations, we just saved $40” (that being the cost of replacing the vest).  

Dolphins:  We were close to St. Croix when we did the man overboard drill yesterday, after sailing for several hours from St. John.   Shortly after the drill was over, someone called out, “Dolphins!”  I’d just delivered a honey & Biscoff sandwich to my hungry daughter at the outside deck table.   Everyone was running around the boat, trying to see the dolphins.   There were three of them, we think one was a mother and her calf.   The calf stuck right beside the mother.  Excited shouting ensued from everyone with this surprising turn of events.  I didn’t go on deck though, I came over and say down beside my daughter.   She couldn’t see the dolphins.   She will never be able to see the dolphins.  My daughter calmly sat eating her sandwich so I sat beside her, listening to the descriptions people were calling out.   Then my daughter calmly but firmly said, “mom, go see the dolphins.   I want you to see them.”

So I did, even though it hurt my heart to leave her.   The dolphins seemed interested in our boat.   They swam all around it.   They surfaced and watched us as we looked at them.   They did jumps and dives and hovered with their heads out of the water.   After a few minutes I came back to the table where my daughter was eating her sandwich alone.   I told her what I’d seen, using descriptive words that would help her understand.   Then I told her, “gosh that sure looks like a delicious sandwich.”  My daughter laughed, tore off a chunk of her sandwich and said, “Mom, you’re doing passive aggressive on me, but you can have some.”

Maybe my daughter is starting to accept her blindness.   It was a trauma, losing her sight.   It’a been a repeated trauma time and time again as she’s lost more and more of her residual vision.   It’s very hard on her at times.   Yesterday was sad, but I was proud of my little girl.

The Big Boy Update:  We had our first vomit of the trip yesterday.   So far everyone has been either completely unaffected (my daughter), mildly queasy a time or two (me) or nauseated for several hours while underway between islands or under high swells during travel (my husband and son).   My husband and son have taken a short-acting dose of something and have come out fine once the boat stops moving or an hour or two later.   Yesterday, my son did vomit over the side of the boat shortly after we left St. John on the way to St. Croix.   It was the biggest chop we’ve experienced so far.   My daughter loved it.  I gave my son a dramamine and he slept for three hours.   When he woke up he went strait for the Doritos as if nothing had happened.

The Tiny Girl Chronicles:   We bought some time ago a refreshable Braille Display unit called an Orbit.  She hasn’t been interested much in using it.  Now that she’s more interested in reading we loaded up some books on the Orbit, which is sort of like a Kindle for the blind.   She’s been reading and enjoying the Orbit a lot on the trip, so success there.   She asked if I could connect it to her iPad yesterday so she could do some typing too.  A while after connecting it she said to me with a big smile on her face, “I’m a nerd."