Uncontrolled Glaucoma

It’s never good news with my daughter and her vision.  Never.   Well, maybe once, but that must have been an accident.  She’s had high pressure for a good while now.   We know for sure she’s had it for six months because that’s when we started measuring her pressure at home with the leopard-print tonometer on loan to us from Duke.

We haven’t seen reduction in pressure in the left, only really functional, eye since that time.   Based on guidance from her doctors we’ve increased the pressure-reducing drops, added a second type of pressure-reducing drops, added altitude sickness medication and increased the dosage of altitude sickness medicine.  

All of those things didn’t affect the pressure in any way.   The only thing they’re likely doing is slowing the production of fluid in her eye to match the rate at which it evaporates.   Pressure unmanaged at the levels my daughter consistently has is permanent damage pressure.

Today she saw a pediatric glaucoma specialist who said she’s experiencing uncontrolled glaucoma and there are two routes we can go with it.   The first is to do nothing.   Her vision will remain consistent but will slowly diminish until it is completely gone.   There is a chance she will have discomfort and pain from the eye at some point in the future and if so, it might have to be removed.  

So that sounds bad.   Definitely bad.   The alternative is to do surgery on the left eye doing a “Pars Plana Vitrectomy with Ahmed Implantation”.   This means they remove the vitreous or “jelly” in the center of the eye and replace it with another fluid, possibly silicon oil (which she already has in her right eye).   Then they add a valve into the eye so that the fluid can drain normally.  

This seems like an easy choice to me but there are catches.   The surgery isn’t without risk.   The surgery will also, absolutely change the way she sees things today.   I likened this to when my daughter got her new glasses and it took a bit for things to not look strange through them.   But it’s more than that.

It could change things dramatically to her.   And that might be very unsettling and frustrating to my daughter.  The doctor today said to discuss with our daughter and see what she wanted to do.   We’ve asked her and for now she wants to have the surgery done.   I said, “and we’ll get to go to Detroit.  I know you like going to Detroit.”   She laughed and said, “and I like going under anesthesia.”

I’ve sent some emails off this afternoon to see if Dr. Trese would be the one to perform the surgery or if we should have it done here.   I’d prefer Dr. Trese.   He knows her eyes like no one else.  

The Tiny Girl Chronicles:  Yesterday I was talking to My daughter’s music therapist.  She brought her four-month-old daughter.   My daughter hasn’t touched a tiny baby since she lost her sight.   She was so interested with how tightly a baby can hold on to your finger and what her hair felt like.   Ella, the baby. smiled at my daughter while she touched her.   Even though my daughter couldn’t see it, she was excited to know she was making the baby happy.

The Big Boy Update:  This goes back to when we were in Hawaii.   My son said to us, “does anyone ever tell Nana it’s okay to look ugly?”   Nana had just told him he was going to look great for the luau.   I don’t think my son wanted to look great.  

The Honeycrisp Apple Endeavor

My daughter participated in something called Cane Quest this weekend.  It was a competition for visually impaired students who use canes to compete in fourteen tasks.  Each task had a score from zero to four.   A perfect score indicated you used all the appropriate and necessary cane skills to complete the task.

My daughter was, I think, a little underaged for participating in the event, but her Orientation and Mobility instructor thought she had all the necessary skills to attend and recommended we sign her up.

My daughter asked me before we arrived if it was okay if she was shy.   I said that was just fine.  I know her, she opens up pretty quickly.   She was paired off with a teacher who would take her to each of the tasks and help her through them if she needed help.   There were scorers at each location to watch and grade on appropriate cane skill usage.

Here’s an example of a task.   Put a blindfold on so that you’re completely blind and grab one of their canes.   Walk into an auditorium.   You’re told there are two aisles.  You need to find the right aisle, walk all the way down to the front row, cross in front of the front row and then go back up the left aisle until you’re at the back of the auditorium.  Find your way to the entrance you came in.   Do this without interrupting others with your cane, walking down the wrong aisle or getting lost.

My seven-year-old did this one perfectly and got four points.   She even knew she was back at the start and stood still, waiting for them to tell her she’d completed the task.  When they didn’t say anything for a bit she said, “I’m back at the beginning.”

There were all sorts of tasks you would need to be proficient in as a blind individual using a cane to navigate your environment.   My daughter is apparently quite good at this.  We don’t see her in action very much because when she’s with us and we help her navigate through something called, “sighted guide.”

Sighted Guide is when a sighted person guides a blind person.   There are ways this is done and not done.   My daughter is pretty good at telling us when we’re not doing the right thing as her guide.   We have no formal training, which we probably should get, but for now our daughter tells when we’re getting it wrong.

The title of this post has something to do with Honeycrisp apples.  Just like the auditorium navigation example above, let’s do another thought experiment.   You want to but some Honeycrisp apples.   Someone takes you to the grocery store and drops you off with a blackout blindfold on and a blind cane.   How to you find and buy Honeycrisp apples?

This wasn’t presented as a problem, but an opportunity to my daughter by her Orientation and Mobility (O&M) teacher.   He takes her on field trips and more recently it’s been to buy things she wants.   She likes Honeycrisp apples and wanted to buy some to bring home to her family.

Think about the grocery store and the hundreds of thousands of individual items therein.   None of them are labeled in a way a blind person can read.   Apples are in the produce section.  You might remember where where the section is from prior experiences in the store.  You might be able to find apples by feel.   But which apples are the Honeycrisp out of all the varieties they carry?   Even if you knew where they were last week, inventory seems to forever be changing around.   What do you do?

Not only is my daughter’s O&M teacher teaching her learn how to navigate, he’s giving her guidance on how to self-advocate.   In this case, and probably for many, many more times in my daughter’s life, she went to the front of the store where the office is.   She told me, “the office is always in the front.”  Then she asked for an associate to help her find her apples.   She is cute and sweet and people like to help her.   She was very happy when she came home with the apples.   What it took for her to be able to get those apples by herself is a far more impressive story.

The Big Boy Update:  My son said in the car this morning.   “I want to go to Canada.   Can we take our next vacation to Canada?”  I’m not sure why other than he wants to go to some place that’s colder than it is here so he can wear his new sweatshirt.

The Tiny Girl Chronicles:  We have maybe made progress in getting my daughter in with another specialist doctor.  Her pressure has been very high for over six months now.   We’ve been monitoring her pressure at home and with lots of drops and medication we can’t get it to go down.   We have a referral to see a pediatric glaucoma specialist.   Tomorrow we’ll take her in and see if we have anything else to try and save the precious little vision my daughter has left in the one eye that isn’t totally black.

Itchy Scratchy

I have a sore throat.   It’s allergies.   We have this yellow stuff that comes down and while I don’t think it’s that per se, I think it’s something that’s around about the same time, starting a bit later perhaps and lingering on after the yellow pollen has gone.

I have some Benadryl beside the bed.  It’s nice to have the children’s liquid Benadryl around.  I can take a swig of it, gargle it around on my sore throat and then swallow it slowly.   This seems to knock back the itching for a half-day or so.

My son, daughter and I went to a festival for a blind foundation today at a park just five minutes down the road from where we live.   We were there several hours, outdoors, in the breeze, with the pollen.   There was a scavenger hunt that included finding an acorn.   It is way out of season for acorns.   There were none on the ground and none to be found.   We even went into the woods, risking tick exposure, to see if we could find an old acorn a squirrel hadn’t gotten.  

Piling through the woods didn’t help my scratchy, now sore throat, sore did it produce an acorn.   Apparently everyone else turning in their scavenger hunt pretended (or lied) and said they’d seen one because the coordinators didn’t even realize the situation until we told them.   They gave us a prize anyway.

My daughter got prizes for playing games.   She impressed more than one person working in the booths by her braille knowledge.   She just took over one braille and started typing things up for the lady.   I was afraid she was going to use all her paper up before we left.  

It’s spring here, the pollen is a plague to be endured for now.   Soon enough the problem will be the heat.  

The Big Boy Update;  My daughter has a GPS tracking watch that can also make limited calls.  This has proved helpful several times when she’s been lost or has needed help. At the park today my son wasn’t lost, he just didn’t know where we were so he had to mount a search through the festival.   When he found us he said, “Mom, I need a watch phone; I was lost and I didn’t know where you were.”  

The Tiny Girl Chronicles:  There was an older gentleman who was blind at the Lion’s Club booth.   He asked my daughter if she knew braille.  She said she did.   He then started asking her if she knew the letters of the alphabet in braille.   He was using a six-slot egg carton and some balls to represent the various braille cell combinations.   My daughter was trying to move quickly through the alphabet but he wanted to move at a very slow and deliberate pace.   She was patient with him and let him ask her the questions to which she’d already completed the answer for him.  I didn’t know that she remembered him from the prior year but at the end she said to him that we’d been here last year.   Maybe we’ll see him next year at the same event.

 

Azkaban

We went to the symphony with my in-laws tonight.   We knew it was Harry Potter music but we didn’t realize it was the Prisoner of Azkaban movie playing on the screen above the symphony while they played music and had singers sing along to the entire movie.

My children hadn’t seen the movie before.   They’d seen the first two, so this was good timing.   I hadn’t seen the third movie in a long time so for me it was a nice refresher.   I loved the third movie with the Time Turner and some of the other plot points.   It was a good movie all around.

We got in late, almost eleven o’clock.   Everyone’s tired.  I need to wrap this up to go and help save my daughter’s stuffed animals from the dog, whom she wants to stay in their bedroom for the night.

The Big Boy Update:  My son loved the movie/symphony tonight.  We talked about it in the car on the way home.   I think he wants to go back next year for the fourth movie.

The Tiny Girl Chronicles:  My daughter told me in the car today, “Everyone eleae’s nana isn’t as good as mine is to me. But don’t doubt that I like ma and pa.”  This came up in relation to Madison’s grandparents, who are called Ma and Pa.   She told me this wasn’t about Mimi and Gramps though, who are also the best to her, she said.

Puppachino

Some things about the puppy, who is fast becoming a dog.   She’s twenty-eight pounds now.  I never thought I would like having a medium-sized dog, but her size has continued to grow on me, which is good since she’s continued to grow.

She likes doing things I’ve never had experience with in my prior, smaller breed dogs.   She loves to run and would likely run with me if I were doing much running these days.   She likes playing fetch, which turns out is an easy way for the dog to get exercise while you stay in the same area.

I can give her a treat, heck twenty treats even and it won’t affect her weight.   Small dogs are in danger of gaining weight with even minimal treats.   And speaking of treats, she likes getting Puppachinos with me at Starbucks.   It’s an espresso-sized cup filled with whipped cream.   I think she likes going in the car with me on the off chance I’ll be going to Starbucks.

And the fur/hair, which I didn’t want to get cut on account of I loved the puppy hair so much has turned out to be the best decision.   She’s still soft and fluffy, but ever so much more manageable.   She loves it, she’s always hot.  Last night she was laying on top of the air conditioning vent in the floor with the cold air blowing up on her face.  She lay there for the entire air cycle, not getting cold and moving away from the air a few minutes after it started blowing.

One thing I’m working on though is her being fearful of people, adults in particular.   It comes and goes, mostly when we’re anywhere other than home.   She isn’t afraid of children and sometimes even wants to go meet children when she sees them, even strangers.   Adults are another matter entirely.

My children love having a dog they can interact with and who loves playing with them.   The dog even wants to go up to their room with them and stay there for the night.   So far this hasn’t worked out for various reasons such as the dog being too interested in my daughter’s stuffed animals or wanting to leave the room later and whining at the door until the children let her out.

Not much negative to report—except that for some reason she decided to gnaw on the interior of the car door today.   I didn’t catch it for a minute or two until I realized there was a sound I didn’t recognize.   I may have to replace a section of the door’s interior.   I was very unthrilled at Matisse.   Very.

The Big Boy Update:  My son and I talk about different things on the way to school in the morning.   The other day he said to me, "I want to be famous.  I want to be a famous multitasker.  I want to hunt, climb and help the needy. I always want to help the needy.”

The Tiny Girl Chronicles:  My daughter started swim lessons today.   She didn’t want to do it but we needed her to have some formal lessons before our sailing trip this summer.   She can swim, but she needs to have some proficiency at stroke swimming.   She was angry and upset because she wanted to play with her friend after school.   Once she got in the water though she didn’t want to stop.   She asked if we could have a lesson twice as long next week.

Am I Having a Baby?

Tonight my parents came over for pizza before heading back to the mountains now that my father’s stint operation is completed and a success all around.   Or, as my son said to my father tonight, “congratulations on your surgery.”  My mother told us at the dinner table a series of events that lead to the writing of this blog post.   Let me explain…

Several days ago I wrote in this blog that my father had had surgery.  All was well but that he was staying overnight at the hospital.   What I didn’t say in the post was that the observational overnight stay was planned from the start and all went completely to plan with the surgery.   My very best friend from childhood’s mother reads this blog (hi Joan!) and wanted to make sure my father was doing well so she called my mother after reading my post.   The unexpected call sparked a lovely conversation she and my mother had on the phone, since they hadn’t caught up in a while.   And that catching up caused a particular story to be retold.

It is the retelling of the story that the title of this post is about.   Because not only was the story retold on the phone between Joan and my mother, my mother retold the story again to my husband and children at the dinner table tonight.

There are stories in your life that get retold from time to time.  I’m forty-nine now.   This story happened when I was just over four-years-old, or about forty-five years ago.   I would venture to say it gets retold on average every three years, possibly more.   Which means I’ve heard the story at least fifteen times.   It is still endearing, even after all these years.

I was at preschool and had an accident in which a piece of playground equipment fell on me, directly on my nose.   It was metal, it was heavy, and I remember exactly how it happened and where I was when it happened.   I remember the bleeding.   There was lots of nose bleeding.   It went on for so long my parents had it looked at and they decided to do surgery because it had been broken.

This was in the day when anything and everything required an overnight stay in the hospital, so I got to spend the night.   To make it sound fun and exciting, my parents told me I was going to get to stay at the hospital overnight, just like Joan had done when she came home with  Jenny.   I remembered this and wasn’t upset apparently because the next thing I asked with a tone of wonderment in my voice was was, “am I having a baby?”

That story is told for two reasons.  The first one is the baby misconception part.   The other is that the doctors found a pea shoved way up in my nose when they did surgery.   We don’t know when I put it up there and/or if it would have sprouted.   It has certainly sparked a lifetime’s debate about the possibilities though.

The Big Boy Update:  My son has been warned multiple as in far too many times he is responsible for managing his screen time.   Today he was allowed some time but after two warnings, continue and didn’t stop until we came to confront him.   He was all about excuses.   When he was given the consequence of losing additional screen time he had accrued for not managing his time he became very, very upset, yelling at us and calling us names and making demands.   He lost more screen time incrementally until he finally realized he wasn’t going to win.   Hopefully he will learn from this lesson.

The Tiny Girl Chronicles:  My daughter is creating a “creature” out of geometric shapes for school.   She wants to make a goldfish.   I’m not sure how we’re going to make a goldfish, “that has to be three-dimensional” my daughter tells me.   Maybe I’ll stick a picture of it here when we see what she creates.   It’s due next Friday.

The Luck Dragon

Our puppy, no dog, at this point—I think we should only call her a dog in fairness because in size, no one would guess she’s still a puppy of only seven months.   She’s twenty-five pounds, probably more, I haven’t weighed her in a while.   She’s meaty while being light-boned enough to move around delicately.   That is unless she’s overjoyed to see you because you’re one of her special people—then she’ll try and bowl you over with enthusiasm, which we’re working on (the bowling over, not the enthusiasm).

Her hair/fur continues to grow while she continues to lighten up in overall coloration.   I didn’t want to cut it until we had to, what with that soft puppy fur would only be around once.   I brushed her regularly and dealt with sticks and leaves sticking in her fur because she was just too fuzzy and cute.   Then we went on vacation.

Nine days without being brushed and her ears were matted in the back beyond the point of salvaging. There were mats on her legs and then there was the problem of the sticky bush.

The sticky bush is a strange bush.   It has these leaves that stick to the dogs fur and won’t be washed out, even with soap.   It has fine little grabber fibers that cling to the dog’s fur and have to be hand-picked out.   I’ve been pulling forty or more of these little bush leaves out every day since we returned home.   I didn’t think it would be a problem once the bush came back into spring leaves, but it did and for the life of me I can’t find where she’s getting the supply of old, dead leaves to stick to her, especially since there’s only one of these bushes and it’s outside the range of her reach in the yard.

Yesterday I’d had enough and scheduled her for a full grooming today.   I warned the children her baby fur would be gone.   We took pictures and said goodbye.   Today I talked to the groomer about just how much of the beard to keep and how much to cut off (most of it off).   How long would her body fur be?  Medium long, but shorter by far than it was.

When I picked her up I was worried I wouldn’t like how she would look.   But I did.   She has a softer face in appearance and her body is much nicer with the shorter cut.   I texted Liz, who has the other Wheaten four months older than Matisse, that I was reminded of The Luck Dragon from The Neverending Story movie when she came home.   Liz said how singular, she had had the exact same thought about Theo when she’d first had him trimmed.

The Big Boy Update:  My son is really good at trying to manipulate a situation.   He’s anonoyingly good at it.   And while it’s frustrating at the time as a parent to deal with it, I’m pretty impressed at how he works a situation with reason and rationale.

The Tiny Girl Chronicle:  At one point when we were in Maui, my daughter threw a tantrum in which she exclaimed, “I don’t like Hawaii.  Can we go to Kauai?"

Blinding Grief?

My daughter is a typical seven-year-old in many ways.  She wants to play with her friends, loves candy, doesn’t want to go to sleep at the end of the day, likes to defy her parents and loves animals.   She’s also not a typical child because she’s suffered a trauma that’s repeated again and again through constant medical interventions and the incremental and repeated loss of more and more of her vision.

That trauma makes her life something we, as parents, constantly struggle with.   What is age appropriate behavior and what is related to her processing, coping with, struggling through and dealing with the loss of vision and realization that everyone around her can do something she can’t?

I have a weekly call with one of our therapists to discuss things that happen in our family and with the children.  The conversation typically goes like this, “Here’s what happened.  Here’s what we did.   I think we could handle it better and/or I didn’t like how we handled it.”  What happens during the dialog that follows is commonly me finding out things weren’t what I thought they were.   Things I thought were reasons or motives for a child’s behavior may have been something else entirely.   And the other part is having to answer questions on why I acted in the way I did and what were my motivations/stressors/expectations and how that affected how things went.

It’s a very good hour spent.   To be honest though, I don’t usually look forward to the hour-long call because it’s a hard hour.   But it’s worth it.   We talk about one or both of the children, depending on what’s transpired over the past week.   The call today was mostly about my daughter.   We talked about how she handled things over our vacation to Maui.

The first was how my daughter has started to say, “it’s a seeing thing.”   When she says this, it’s because she’s bored or frustrated because she can’t experience it.   When we got in the car from the airport, Nancy started explaining what we were seeing on each side of the car.   My daughter was flat out rude, saying things like, “STOP TALKING!” and being very vocal in not wanting to hear about things.   I think we had a misconception that describing what was outside the windows would be interesting to my daughter.   Sometime she just might not care or want to know—even if this vacation was suppose to be an educational one about the Hawaiian islands.

Liz said my daughter saying she wasn’t interested in something because it was a “seeing thing” is a big step in my daughter accepting her lack of vision.   We tried whenever we could on the vacation to do things that would be interesting to my daughter, but truthfully, some things we couldn’t do anything about.   There was a boat ride, a submarine trip and a helicopter flight that were about 95% visual.   She participated and did her best, but she knew she was missing out on things and it had to be sad in a way.

That brings me to the second thing—the rock named “Rock”.   On the day we were leaving we visited a national park in the mountains and swam in a stream.   My daughter picked out a rock and before we realized we couldn’t take rocks out of the park, she decided she wanted to keep it.   She had held on to that rock for about fifteen minutes—fifteen minutes of time in which she bonded with this rock—and then she found out she had to leave it there.

She was distraught.   This was no tantrum, she was incredibly upset about the rock.   She had us take a picture of it.   She wailed about it in the car.   We got to the airport and she talked about how sad she was.  Before we got on the plane she cried about it and when she woke up later on the plane she cried about it some more.   She knew the rock was gone.   She knew it wasn’t coming back.   She was grieving and I didn’t know what to do.   We tried to honor her feelings.   She wanted to know if we could get some clay when we got home and make a model of Rock so she could remember it.   I said we surely could.

When we got home for the next two nights she came downstairs after going to bed saying she was having trouble going to sleep (which never happens) because she was sad thinking about Rock.  I have never seen her that upset over a single thing before.   And this wasn’t the only thing that this happened with on the trip.   There was another item she cried about for two days and only moved off that item when Rock took its place.

When I told Liz about this she said she thought this could be my daughter actually starting to grieve her loss of vision.   It seems like after three years she would have done so, but it doesn’t work that way in a child, especially one that young.   She’s only understanding the full implications of what she’s lost now and is getting to the point where she’s processed it enough to begin to grieve.   And this trip, while wonderful in many ways for her because she loved many things about it, also emphasized in her mind all the things she couldn’t do because she couldn’t see.

She was transferring the grief of her vision into something concrete: a rock.   I talked to Liz about how we can best support her as the grief continues, which may be a long process and may come in spurts.   Being there with her is the best thing we can do, honoring her emotions and feelings and letting her know we’re here with her is sometimes the best thing we can do.   I think the dog does the best at this.   I’m very glad we got a dog.

The Big Boy Update:  My son asked about Roman numerals last night as he was getting ready for bed.   He mentally got it so fast I was doing that thing we parents do sometimes, thinking, “my child is so smart”.   It’s fairly straightforward rule-wise, but he got it so quickly, saying, “give me another number!” and then answering what 859 or 470 or 23 was in Roman numerals.   We got in the car today after school and he wanted to review again.   I told him there were some really big Roman numbers I grew up seeing all the time I’d show him when we got home.  When we got in the house I pulled up an image of an old movie poster on my iPad and told him to find the Roman numerals on the page in small print.   He found them and then figured out it was a number, in this case 1984.   What was the number, I asked him?   He guessed it was a year.  I told him it was the year the movie came out and I had no idea why movie release dates were always in Roman numerals, but they were.

The Tiny Girl Chronicles:  My daughter asked me while we were walking around in the airport in Maui, waiting for our plane to board, “what’s your least-favorite word, Mom?”   I said I don’t think I’d ever thought about it before and I didn’t think I had a least-favorite word.   Did she have one?  She said yes, her’s was ‘unconscious’.   I agreed, that wasn’t a good word in almost any circumstance and maybe it was my least-favorite word too now.

Rapid Fire Night

1. I have a migraine so it’s short, succinct updates on little things tonight.  
2. My father had a stint put in his aortic valve today.  All went well.  He’ll be home tomorrow.   I don’t believe in my entire life my father has ever spent a night in a hospital.
3. The dog continues to grow.   She likes to spend time under our bed, but she doesn’t really fit any more.   
4. There is one bush that has “sticky” leaves that affix to the dog’s fur.   She isn’t in direct contact with the bush, but the leaves from. last season still blow around and get stuck to her.   I would guess I pull out forty or more leaves a day in her fur.  She’s a magnet for leaves.
5. The dog wants to stay up in the room with the children at night.   She doesn’t want to come out—until she does.   When she does, she whines at the door until my daughter wakes up and lets her out.

The Big Boy Update:  Today was sharing day after spring break for my son’s school.   He took in pictures from our trip to Maui and enjoyed showing them to his classmates. 

The Tiny Girl Chronicles:  My daughter was very happy to be back at school today after track out break.   She had two substitute drivers though.  The one who brought her home said, “she talked the whole time!”  That’s my girl.  

Dedication

Nana is one dedicated person.   Dedicated to having an Easter Day meal that wasn’t compromised just because of a little thing like being out in the middle of the Pacific Ocean for the last nine days.   That’s right, Nana got off the plane and instead of going home, unpacking and getting some rest she and Papa missed out on during the overnight flight from Maui, she got in the very long Honeybaked Ham line in the hopes they still had ham by the time she got to the front of the line.

She didn’t have her Easter dishes, she told us, but she got Easter candy, napkins and other things and dressed her table up so well that unless you knew they weren’t her special Easter dishes, you wouldn’t have guessed.

Then she cooked.  There were eight items to wedge onto your plate.   Maybe nine, I can’t remember if when Papa and I were counting that included the bread or if it was the salad we forgot to add in.  There were enough things that you had to do space management on your place to get some of everything in.

And then there was dessert.   Nana had baked and decorated a cake.   All this less than twenty-four hours after we’d landed back in town.    She and Papa had my parents and us over for an early dinner.   We all had a good time.   Thank you to Nana and Papa for making our Easter Day a special one.

The Big Boy Tiny Girl Egg Hunt Alternation:   Nana, I mean the Easter Bunny, had hidden some eggs at their house when we arrived,   Blue for boys and pink for girls.   This was so my son wouldn’t  get more than half the eggs, and it was a good idea for sure.  My son helped his sister find hers, which she appreciated.

Then each child hid some additional eggs with Mimi.  She and my daughter hid some for her brother and after he had found his eggs, he and Mimi hid some for Reese.   They enjoyed being the “hider” of the eggs and the both liked getting extra eggs for their baskets.

Rock

My daughter is grieving.   This is going to sound crazy, but it’s true, she’s mourning the loss of a rock.  We were in a national park shortly before leaving Maui and my daughter found a rock she wanted to keep.   You can’t take rocks from national parks (and this was wasn’t a little pebble).

She wailed and cried when we had to throw it back into the river.   She wanted to kiss it.   She asked if we could take a picture of it.   She wants to recreate the shape of the rock in clay when we get home.   This may sound silly, but it isn’t to her.   She can’t see anything and has different ways of making things memorable to her.   One of those ways is by keeping a souvenir she can touch and remember the time through.

She knows the rock isn’t coming back.   She knows there is no way to get the rock so she’s not tautruming to try and get anything from us, she’s just sad.   She burst out tears for a while today on the long flight home.   She was upset several other times and tonight she couldn’t get to sleep because she said she couldn’t stop thinking about ‘rock’. We’re trying to comfort her the best we can.

The Big Boy Update:  My son slept very little on the overnight flight back, but when we told him he had to go to sleep he listened and was asleep in three minutes.  

The Tiny Girl Chronicles:  My daughter slept from before we boarded the plane last night, most of the overnight flight and most of the second flight home.   Of all of us, she’s the most rested.  

Pengi

Our Hawaiian vacation is almost over.   I type this as I sit in the Maui airport, waiting to board an overnight flight home.  We had a very lovely time.   We saw some amazing things (for those of us with sight) and experienced just as many things with our other senses.

We thanked Nana and Papa today over lunch as we reflected back over the week.   We went to the top of the island when we went up on the volcano.   We went to the bottom of the island when we went on the submarine dive.   We went all around the island in the car, visiting cities, sights and beaches.   And we went above the island, taking a helicopter ride up and over the island yesterday.

We took pictures on our phones, but we took more than we would have normally for one unexpected reason—Pengi.   Pengi is Juliette’s “Travel Buddy”.   Her fourth grade class was tasked with picking something to have travel around with friends and family, taking pictures along the way.   When we first committed to taking pictures with Pengi I thought it was going to be a lot of work, and a commitment I did’t really want to commit to.

But we’d said we’d do it and we’d do our best.   My husband started out the trip by getting Pengi “wings” with American Airline and documenting the flights there with several great shots.   From there it sort of snowballed.   Everyone wanted to get in on the Pengi photos.  He went everywhere with us.  

My husband created a shared pictures folder on iCloud with my best friend (Juliette’s mother).   We would upload photos a few times every day or whenever Pengi went somewhere with us.  I got texts from Eleanor in the middle of the week saying how her family was loving getting picture updates from Pengi.  

We called last night and talked to everyone about Pengi and how the vacation had been going.   Eleanor got on the phone and said she couldn’t believe she was actually saying this, but she has been jealous of a stuffed penguin this week as she’s looked at the pictures with her girls.  

I told Juliette we had to thank her for letting us borrow Pengi.  At first I felt like it was a big commitment to remember Pengi and take pictures with him.   But it was the other way around—Pengi turned out to make us all more excited about taking pictures.   The children wanted to be in pictures with Pengi, they didn’t complain about taking pictures and they actually smiled when we took pictures.  

The adults all had fun finding different and interesting places to get Pengi in photos.   Nana’s favorite shot was Pengi at the ATM because he needed to withdraw cash for more adventures.   We’re all looking forward to telling Juliette and her family all about Pengi’s vacation too when we get home tomorrow.

You’re Not In Charge, You’re Responsible:  My son and daughter wanted to go downstairs and outside of the condo to play in the Hawaiian grounds around our building.   My daughter really wanted to go and have fun with her brother, even though she didn’t know the area and it could be hazardous to her without vision.   But she trusted her brother (and is tenacious in wanting to be independent).  I pulled my son over to the side and told him, “you’re not in charge of your sister, but you are responsible for keeping her safe.”  He nodded, understanding and agreeing.   They went down and played more than once like this over the past two days.   Once when I went somewhere with my daughter she showed me the wall they had climbed over and the bushes they had hidden behind with one of their games.   She got to do things with her brother she wouldn’t have done with an adult or another child that didn’t know her well.

Shells Come In, Lava Goes Out

I don’t usually tell a story here in pictures, but I think for tonight’s post I’ll make an exception.   Yesterday we travelled around a good portion of the perimeter of Maui to see multiple sights and experience as much as we could pack into a single day.   The highlight of the stops was the black sand beach that we’d been telling the children about for months.

I'd been to a black sand beach before on my last trip to Hawaii, circa 1980.   I remembered the sand being black, but not much else about the experience.   I had heard about them many times from people and in stories but had never really bothered to think about why one beach might be black sand and the overwhelmingly larger population of beaches around the world would be ‘sand’ colored.  I mean it was obvious, right?  Hawaii had volcanos that made volcanic rock which was black, so yeah, black sand beach was logical.

It wasn’t until I set foot on the beach itself that I had a huge realization about how and why it was a, ‘black sand’ beach.   It took all of ten seconds to realize and when I did, it was one of those head slap moments it was so obvious, so elegant, and so very beautiful.

Here’s the beach as we approached from up above.  I was the last one down so I took a few pictures on the way.   From this distance it looks like any other beach with the exception of the black part.

I went down a long staircase and came out on the beach itself and this is where I had my realization.   First let me compare with regular sand beaches.   The material for the sand is shells and other silica products.   The location these components come from is the ocean itself.   There is a huge factory of materials being made beyond the water’s edge and when those materials are washed up and beat against each other, they’re broken down until they’re the small particles we know of as sand.

The black sand beach is made of lava rocks though.   The source of all the material for this particular black sand beach was in our immediate vicinity, the black lava rocks themselves.   When I stepped out onto the beach it wasn’t a beach at first, it was smooth, black lava rocks.   The erosion zone wasn’t vast, it was right here and very specific.   Fifty feet back from the water’s edge you had pretty large rocks; the closer you got to the waves the rocks turned into stones, then pebbles and then sand.

To give you a bit of perspective, here’s Pengi, our trip Travel Buddy, reclining on his beach chair in the pebble area of the beach.

The pebbles are a bit tricky to walk on.   They’re not sharp, but they move under your feet in a strangely uncomfortable way.   The sand, or super tiny rock areas are easier to walk on but the sand sticks to you and is hard to get off.

Here’s my daughter in the black sand, sitting on a rock that will someday be broken down into future black sand.

It was beautiful to look at and visually deceptive.   It looked like there were large droplets of water sitting on top of the sand when the waves would retreat but it was larger rocks, so smooth from the erosion process that they looked like water on top of sand.

After saying hello to my daughter, Nana and Papa, I asked where my son and husband were because I hadn’t seen them on the beach area.   Just then, I heard my name being called from above.  I looked up towards the direction we’d descended from via the long flight of stairs to see this:

"How did you get up there," I asked?   My husband pointed and my father-in-law told me there was a lava tube that you could enter into near the bottom of the steps.

Getting into the lava tube required some initial hunching down but once inside, the cave area was quite large.

I was debating climbing up out of the tube.   I was trying to figure out which way up would be closer to where my son and husband were were—and which option I though I could actually manage.  Just then I saw my son pop his head into the opening right above me.   I asked him, “is your father up there with you?”   He replied in very excited voice and then disappeared out of sight, “yeah, he’s taught me a lot about safety!”

We stayed for a while longer at the black sand beach, until the sun was threatening to set.   My son and husband never got in the water at the beach they were having so much fun climbing.   I had to get their attention with some waving from the top of the steps, giving them the “wrap it up” hand signal to get them to come in at all.  You can see them in the orange and red shirts sitting on a rock overlooking the beach directly below.

I think everyone agreed it was definitely worth the long ride to get to experience the Hana black sand beach.

The Big Boy Update:  For lunch on our way to Hana we stoped at a roadside restaurant—one of the few options to eat on the whole trip.   My son ordered a lamb burger with mushrooms, bacon, lettuce, tomato and pickles.   He typically wouldn’t eat something like that.   We told him we were impressed, that his taste buds were growing up.

The Tiny Girl Chronicles:  My daughter wants to do everything anyone else can do.   She doesn’t want to be limited by her lack of vision.   When she found out her brother and father were climbing up on top of the lava rocks, she wanted to go too.   I knew, well, we all knew she wouldn’t be able to be safe up there because it required sight to make the best calls on what to do and not do.   My husband is very kind though.   He told her when I said something to him, “Reese, come on, let’s go. There is a place we can climb close to here that I know you’ll enjoy.”   My son realized what his father was doing and he ran over, saying it was a great place and he’d go with them too.   My daughter came back, very happy she’d gotten to do what her brother had done, even though there had been a substitution in location.

Road to Hana

We drove around Maui today.   We were in the car for most of ten hours, the majority of the time going slowly on little switch back roads, some of the time single lane requiting one vehicle to pull off so the other vehicle can pass.   I don’t typically get nauseated from car rides but the duration and intensity of the bumps, turns, twists, jostles and overall lack of back or arm support in the third row of the minivan, and I was beat by the end of the day.

It was worth it though.   The road to Hana is famous for it’s beautiful scenery.   The volcano who’s cap was covered in clouds but sunny just below set the view up for the small restaurant we stopped at for lunch just beside a winery that had some of the largest trees I’ve ever seen.

We’ve been taking pictures with Pengi, Juliette’s “Travel Buddy” for a school project.   We’ve all been committed to getting Pengi in as many “photo ops” as possible.   After lunch I took Pengi over to see the Ornamental Fig behind the winery.  It took three pictures, backing out after each one to get a real feel for the magnitude of the tree.   It dwarfed the little winery beside it.   Pengi is in the first picture, see if you can see him in the third picture...

After the winery and lunch the road got more interesting.   It got narrower, more turnier, bumpier and of course, more scarier.   My husband stayed calm the entire day, keeping a good disposition throughout .  At one point my mother-in-law was concerned about oncoming traffic around corners on the single lane road.   She kept telling my husband to honk the horn as a warning before getting to the turn.   This annoyed myhusband after a while but he was put in his place by my daughter who said, “quit it, dad; Nana can be nervous if she wants to.”  My son chimed in, apparently on the side of his father, saying, “‘yeah, and every turn Nana says, “oh no, we’re gonna die.’”

So that lightened the mood.   We were on the lookout for banana trees, which we found out weren’t trees but herbs, which is interesting.   My daughter said to the entire car, “everybody keep your eyes peeled…well, everybody but me.”

After a lot of treacherous yet well-executed driving with beautiful sights all around us we got to the Seven Sacred Pools, which we’d told my daughter we’d get to swim in.   She was willing to commit to seven hours in a car with “seeing” things all around her because she was excited about these pools in which you could slide from one of them to another over the rocks.   But they were closed for swimming due to recent weather.   ‘'

My daughter didn’t break down, which I was proud of her for.   We trudged on, stopping to look at another waterfall people were jumping off of.   We stopped and got Hawaiian shaved ice and then made it to the black sand beach, which I want to write a post on tomorrow as I’m about to fall asleep as I write this and the black sand beach was really something.

The Big Boy Update:  My son wanted his iPad, which we brought along in the car for the long day trip to Hana.  He was interested in the scenery around the car and actively participated in the conversations, although he was on the hunt for his iPad when there was a lull several times.   I asked him what he was doing once and he said, “I’m smelling for my iPad” and tried to looked innocent.

The Tiny Girl Chronicles:  My favorite saying of the trip so far comes from my husband, several days ago.   My daughter is falling asleep early due to the time change and has missed lots of dinners.   She catches up at breakfast with a big meal, but we’d like her to eat dinner if she could wake up.   We’ve tried several things but nothing works.   My husband said he’d carry her back to the room the other night and I asked how he was planning on doing it when we had people around us we didn’t want to disturb.   He said, “she only screams when you make her walk.”   And boy was he right.   You can carry her, have her sit on your lap or just have her stand.   But if you try to make her walk to wake up, cover your ears.  

Furnace Tower

We did lots of things today in Hawaii.   We played supersized chess and checkers, my daughter made a lei, we swam in the pool(s), went on the beach, fed the koi fish, went on a boat ride to take a submarine trip and then went to a luau to end the night.

If I wasn’t so tired and I think I could stay up to write a longer blog post, I’d write more details out.   Maybe <yawn> I’ll get to writing this blog post earlier tomorrow night.

Oh, wait, what is the title of the post about?  I almost forgot.   We were coming back from the volcano the other day and I was trying to describe something off in the distance to my daughter.   I looked at the thing and couldn’t remember what it was called.   It was something I didn’t have an occasion to use the phrase for very often.  

I gave up trying to remember the actual phrase and told my daughter there was a tall, “furnace tower” up ahead.   Everyone laughed at me.   My husband said he thought, ‘furnace tower’ was better than ‘smoke stack’ anyways.   It would appear there are a number of these furnace towers around Maui because we saw another one today.

The Big Boy Update:  At the luau tonight there was a prayer at the beginning.   Everyone was suppose to hold hands around the table.   We were in a long table with another family beside us.   My son reached out for the girl’s hand beside him.   She wasn’t so sure about him though.   My son wasn’t shy at all, it was what was done and he was fine holding someone unknowns hand.   He was friendly about it and they eventually figured out a way to make peace with things before the prayer was over.

The Tiny Girl Chronicles:  My daughter very much wanted to make a lei.   We reserved a spot and then met this morning together with other people in the activity center.   There was a problem though—the long, sharp needle used to string up the orchid flowers.   After a few false starts she got the hang of it.   It’s harder to know what to do when you don’t know where the end of the long needle is until you find it.   Pushing it through small, delicate flowers you’re holding and not poking yourself is a second challenge.   She didn’t give up though and is proud of her lei we’re keeping fresh in the refrigerator.

Palm Fronds

My daughter and I had found a palm frond two days ago while we were walking outside our rooms.   She brought it back to show Nana, who said we should keep it because Sunday was Palm Sunday as well as Nana’s birthday.  It was large so we put it on the porch.   Last night we were celebrating Nana’s birthday with a family favorite dinner of pasta, made by my husband, followed by some dessert cake options from the grocery store.

My daughter was excited about dinner and had heard Nana was going to tell a story about the history of why Palm Sunday was called that—only my daughter fell asleep.   She fell asleep hard.   We woke her up and brought her to the table where she curled up into a ball on the chair and fell promptly back to sleep.   We tried to wake her for the birthday song singing but she wouldn’t budge.   It was only later when she woke up enough to realize she’d missed everything that she became upset enough to really wake up and ask for food.  

So in the end she got to wish Nana happy birthday, it was just later than the rest of us.   This morning she and I went out early to see what we could feel.   I told her I wanted to take her on a leaf hunt—that there were all kinds of leaves I’d seen that were different than we had around us.   We were going to go touch and feel some leaves.  

Just outside the tower our rooms were in and I saw across the way a Gardner cutting palm fronts—live ones that were huge.   They had been damaged or the plant had overgrown or some other reason and he was cutting specific fronds down and laying them in the back of his utility golf cart.   I asked if we could have one of them and when he heard why, he helped get us the biggest one.

My daughter, the frond and I had to fit into the elevator.   It was taller than the ceiling so we had to lean it over.   My mother-in-law thought it was wonderful.   We decided to take the old frond that was a pittance in size, all shriveled up and brown, and swap it out for one of the other fronds the Gardner had cut down.

My daughter and I got back outside to see the golf cart moving slowly away across the property.   I told my daughter I thought we could catch it because he was most likely going to stop for another pruning location close by so she and I walked quickly, following at about the same speed as the cart was moving.

Then he turned.   So we had to move quickly so we didn’t lose him.   We went down a path between buildings—a long path.   He didn’t stop and my daughter said she was getting a cramp.   She said it was okay though, it was worth it and she’d keep walking through the cramp.   We kept going and he turned again.   We walked even faster until we got back out at what was by this time, close to the entrance of our building.  

Only he wasn’t in sight.   Not visible, but there were only two ways he could have gone.   I went the most likely way and when my daughter had to rest for a bit I scouted ahead until I saw palm fronts sticking out of the back of something hidden behind bushes.

I went back to get her, saying I thought I’d found him.   We walked even faster when we realized he was on the move again but then slowed down, breathing heavy when I told my daughter he was coming back our way.   He greeted us and we told our story.   He smiled, accepted the old, dry frond and gave us two fresh ones, cleaning them up with his pruners.

My daughter thought we had to retrace the entire way back and was happy indeed when she found out we were almost back to the elevators for our rooms by the time we’d gotten the new fronds.  We’ll play with the fronds and then return them to the flower beds before we leave to go home.

The Big Boy Update:  I met my husband and son at the beach this morning.   As I approached my son came up towards me, pulled up his shirt, looked unhappily at his armpit area and then dove into the sand and started rolling around, trying to cover his entire body in sand.   I had to drop something off at the hotel room right after that and when I returned ten minutes later my son was still there, sand all over him.   This does not look comfortable to an adult but for some reason looks fun to a child.

The Tiny Girl Chronicles:  My daughter gets scared and fearful or things and panics.   She was out in the hallway of our condo building, feeling around for braille.   She had figured out the room layout as well as some extra rooms like the, “Trash and Recycling” room as well as the emergency stairwell,   I had her stop so I could show her something she should know about, should recognize, but should only use if she needed to—and if she needed to use it she must absolutely use ir: the, “In Case of Fire” pull down alarm.   She was so scared she would set it off it took almost ten minutes for her to trust me enough to feel it calmly.   Once she did she was fine and we moved on.  

Birthday, Rocks and FIghts

Today is my mother-in-law’s birthday.   She had one birthday wish, she told all of us when we had piled into the grey rented minivan this morning.   She wanted us to not whine, fight, complain or yell at each other.   That’s all she wanted, so if we could please make it happen, that would be ever so nice.

Bits of her wish were directed at different ones of us.   We have a whiner, we have several yellers and we have two children that will turn to physical pinches, jabs, pokes if the verbal route doesn’t work.   The only one who was immune or excused from Nana’s birthday request was Papa—on account of Papa never does those things anyway. 

We all agreed to try and do our best.   We had to coerce agreement out of the children because they were pretending not to hear.   My children are good children overall, but they’re very trying sometimes.   Lately I’ve been losing it at both of them for various reasons.   It’s age and maturity level in part, its part their own personalities and there is the added complexity of my daughter’s vision loss.   

I’m not sure if I explained the above as  part excuse because I don’t know what we’re doing wrong.  Or if it’s just children and development and everyone goes through something at one point or another.   We had a bad night our first day.   There was yelling and whining and people weren’t getting along at all.   Nana told us later, me specifically, story after story of other relatives with their children at similar ages where things just weren’t under control, no matter how much you tried or planned. 

This morning did start out well with happy family in the car, all going to the top of the volcano.   We left early for Haleakalā.   The weather was nice, although long pants and jackets due to the over ten thousand foot elevation.   I spent time with my daughter, who really wasn’t interested in anything.   She said, “this is a seeing thing.”  I knew she was bored.

She and I walked around and started feeling rocks.   She wanted to keep the rocks, putting little ones in her pockets.   We talked about how they were lighter than regular rocks.   She and I made up songs about the rocks.   There was a man performing a wedding ceremony in one area,   He played his shell horn in each cardinal direction and then began to speak to the couple.   We listened for a bit and then went back to the rock collecting.

Were we allowed to collect rocks?  We weren’t sure.   We’d just driven up, up and up, for over a half-hour to get to the top of the mountain—which was made of volcanic rock.   There wasn’t exactly a shortage of rock.   But was it protected rock?   I never saw a sign that said it was, so we collected small rocks for my daughter and son’s friends.

We stopped in at a Mexican restaurant in a small town on the way back and then stopped a second time for shaved ice.   A note in the shaved ice shop said, “snow cone is a curse word in this shop.”  Then we explored the largest banyan tree I’ve ever seen.   My daughter could feel it, but I don’t think got even close to understanding how big it was, there were sections of the tree everywhere.  It was hundreds of years old.

Finding things that my daughter can experience sometimes has us going in directions other people might not even notice.   After lunch she and I walked out and looked around the parking lot.   We found some chickens off to the side, but they didn’t want to be approached so we looked at the foliage.   We found a plant that had leaves as tall as my daughter.   I picked her up and let her feel the leaf.

The Big Boy Update:  My son was out on the beach with his grandparents when they saw a young sea turtle swimming right at the edge of the shore.   The walked along beside it down the beach for a good while, letting the swimmers in front know a turtle was coming their way.

The Tiny Girl Chronicles:  Not being able to climb the banyan tree today was tough for my daughter, She loves climbing trees.

Matisse In My Heart

We’re in Hawaii now.   It’s lovely here.   I mean, who ever went to Hawaii and said it was anything other than perfectly tropical in every way?  I wrote yesterday’s blog post while we were still in the plane.   I posted it while we were traveling to the resort in the car via my phone.   I was tired but we were all happy to have arrived.

This morning we were up early—4AM early—which wasn’t that early considering the six hour time change.   We had cinnamon buns, cereal and pineapple and then went back to sleep until the more reasonable time of seven-thirty.   We all went out to check out the perfect weather and scenery.  My daughter and son spent some time on a hammock right on the edge of the ocean sand.

My daughter and I went out on the sand to see what we could see.   I was trying to find something that she could do, experience, feel.   She can’t see the beautiful sights, pretty much at all anymore.   I found a tree I thought she could climb and took her back to shore.   She clambered up and told me after scouting the branches, “I bet I could sit here, look down at the sand and listen to music for an hour without getting bored.”

So I set a timer on my watch for an hour to see if she was right.   I went up to a bench and said hello to a man there.   He and I got to talking.   I was in the “Cigar smoking zone” where he had a cigar while his family got ready to leave after a week’s vacation there.   My daughter started talking to our new friend, Andy, now too.  

When my daughter makes a friend, she makes a friend.   She talked to Andy from the tree for yes, most of that hour she talked about.   Her brother got into the tree later and I got this picture of the two of them, as well as the rainbow off to the right.  

Andy is one of those adults that just gets children and can speak to them in their language.   One of the things we talked to Andy about was our dog.   He asked my daughter if she missed her.   My daughter very sweetly said, “I have Matisse in my heart.”  She talked to Andy until he had to leave and then made an appointment to meet back up with him later in the day.

We did a lot of pool swimming, ice cream sundae making, smoothie drink drinking (or the adult equivalent of smoothies).   We may go out for dinner and shopping.   My favorite sunglasses crashed and shattered, which would have distressed me to no end had I not bought multiple replacements of my favorite sunglasses at $5 from Wal*Mart when I found them last year.

I came in to write this post when I hear there were going to be tattoos.   I don’t know that I’m up for a tattoo.   My husband and daughter headed back out when they heard Nana had gotten one.

The Big Boy Update:  My son for a long times asked for, 'modesty' when he was changing clothes and didn’t want us to see him naked.   Uncle Bob told him recently that the word he really meant was, ‘privacy', not modesty.  Now my son uses the word privacy when he wants to get dressed.   The other day I told him I wasn’t moving as I was working on something, but I wouldn’t look at him while he changed.  He said, “yeah, but you can puh-tray me any time.”   I told him, “I’m not going to betray you, I’m finishing writing my blog post and am too busy to peek at you changing clothes.”

The Tiny Girl Chronicles:  My daughter named her cane.   Aside from naming the very first cane, “baby cane” at the behest of her orientation and mobility teacher, she’s never wanted to name any of her canes.   She goes through them fairly frequently because she’s growing and has to get another cane that matches her height, just like children get shoes when their feet grow.   This cane, which happens to be blue and white, she decided was named, “Blueberry”.   She told me it’s because it was “freshly baked”, and while I’m not sure how that factors into the name, I’m glad she’s named her cane.   She’s starting to like to carry it with her now.  

Long Travels, Happily Here

By the time I post this we’ll be in Hawaii. It’s been one of those long travel days where you get up extra early to get to the airport in time to catch one of the first flights out. We did all that and then had two flights, the second being close to eight hours.

That long flight worried me for two reasons: my children and me. My children because that’s a long time to stay occupied. My son was fine with his iPad and Nintendo Switch. He and I did some things together but mostly he’s happy entertaining himself.

My daughter was the main worry. She needs more interaction with other people. She both needs it from the vision impairment perspective and also craves companionship. She was great though; she listened to some audio books and worked on two stained glass projects I’d found for her that were tactile and fun looking. She could almost do it completely independently, although I told her I would come in for quality inspections.

The other thing that worried me is me. I travel “so so” to “super painful”. It’s not something I can predict or prepare for, there are just too many variables. Wait, that’s not true, I prepare for and try to prevent whatever possible—because who wants to travel in pain?

There have been ups and downs on the travel from my perspective, buy my in-laws had upgraded us to economy plus or something like that and that made a huge difference, It might not have been as bad if the changeover to the backup nerve medication hadn’t happened yesterday. But we’ve got a pool and hot tub and all kinds o fun planned now that we’ve arrived. It’s just the getting there that’s a bit of a trick for me sometimes.

The Big Boy Update: Greyson said enjoyed the airplane because it was nice, relaxing and quiet—and his iPad and Switch never died.

The Tiny Girl Chronicles: My daughter just told me, “there was this really nice lady I met named, Amanda on the first flight. She let me feel the bag and mask.” I didn’t realize she was talking about the safety demonstration at the beginning of the flight until she said, “You know when they want to put me to sleep, the nose and mask part of that is basically the same thing.” She hasn’t anything, but she’s felt the airline cabin pressure loss mask assembly and knows what they use on her in the OR and she’s right, they’re very similar.

Not Panicking

My husband says I get all panicked before a family vacation.   He says I plan days in advance, have a long list, get a good bit done well in advance of our departure date but somehow I still manage to think we’re not going to have enough time to get everything done.

So this time I tried it his way.   I didn’t tell him I was doing this; not to set him up in any way, but because I didn’t disagree with him, but if I was going to panic about packing, might as well have something to panic about.

Or at least that’s how my thoughts went earlier this week.   On the whole, things went find.   The things that I worry about did happen though—things unexpectedly come up that take time and remembering things when there isn’t enough time to get it all done.

Tonight I had a meltdown moment because we were out of time and things hadn’t been done by the children such as picking what they wanted to take to put in their backpacks.   They can’t do it tomorrow because we’re leaving the house before six AM.   This is sort of important because they’ll be flying for twenty hours of air time before they get home.   The backpack contents is important.  Out of time because they had to get to sleep before my daughter, for instance, fell asleep on the floor of the room.

There were other things but mostly I feel like the trip is a hack—I’m packed and I think I have most things, but I’m not sure if I made the best decisions and I don’t know what my husband is carrying and what I am and how that’ll affect things.   Those conversations like, “oh, yeah, I packed that but it’s in the checked bag.   I didn’t know you needed that on the plane” or, “I thought we didn’t need jackets, I didn’t realize the volcano tour got into the forties commonly because of altitude.”  

I’m tired, so tired, and I don’t feel like this is my best trip planning.   I’ll have to ask my husband if the one rather intense packing outburst from me to him and the children was better than the constant discussion of all things trip for days before like I do for most trips.

The Big Boy Update:  My son packed his backpack and it is very, very full.   I think he’ll actually be fine carrying it without complaining.   Tomorrow we’ll know if we need to relocate some of his weight to checked bags on the way home.

The Tiny Girl Chronicles:  I thought my daughter was going to have a problem letting the dog go without excessive hugs as I was heading to the car to head over with Matisse for boarding.   But my daughter was fine.   She was playing a new hiding game outside with Madison and told me, “it’s okay, Mom, we already said goodbye,"

Long Overdue Size Upgrade

My daughter has a small table she works at when she uses her braille writer.   We got it not that long ago…well, maybe it was a while ago…wait, how long ago was it?   Was it when the children were first walking and learning how to sit at a child-sized table?

That’s pretty much the conversation I had with myself not that long ago when I watched my daughter perched on the tiny chair on her feet with her knees bent up and her arms around her legs while she typed.   Was, perhaps, just maybe that table too small for her?   Was, do you think, she bigger than a three-year-old and in need of a taller and larger table?

I’m not sure I’m that smart and/or if I would have realized it had my daughter not been wrestling with  trying to fit her assignment (one stack of braille papers) along with the output from her braille writer at the same time.   She had figured out a way to do it by moving the braille over to the far edge of the little square table and then leaning to the side to type while leaning to the left to read.

That’s when it clicked, “I have a seven-and-a-half-year-old.   Maybe I should look into a bigger desk and chair set for her.”   I’m slow, but when I get a notion to do something, I don’t dither.   But what size desk and chair?   I consulted the World Wide Web via the search engine Google and came up with the specifications I needed.   I found a company that made wooden desks and chairs specific for children and placed the order.

Today it arrived.   I put the table together tonight and my daughter was happy about the upgrade.   She doesn’t think about it this way, but the only place she can, “write” things is at that table, using her braillewriter.   She can barely write her name with a marker, well, she loves writing her name, but only we can read it.   Sighted people need a writing implement and any surface that retains marks and you can write.   My daughter has to type it out, and for that she uses her braille writer, at that one table.    So it’s an important table as far as I’m concerned.

I say my daughter was happy.   She checked it out and then went back to playing songs on the keyboard she’s learned from Chelsea, the music teacher.   Songs she has written out in braille, typed up with her braille writer, so she can remember the order of the keys.

The Big Boy Update:  Tonight I was taking a picture to compare my daughter’s old desk and chair with the new one.   My son photobombed me on the shot.  I swear, he was nowhere near and he wasn’t paying attention to me when I pulled out the phone to take the picture.   He has lightning fast reflexes and an insatiable desire to pose for photos.



The Tiny Girl Chronicles:  For the first time in two years, my daughter got new glasses today.   They look very interesting on her.   They’re very similar to her last glasses, but they’re larger because her face is larger.   She put them on and said almost immediately, “I can’t see with them”.   She was playing a game of old maid with her brother and Madison.   I asked her if she was okay with them and that perhaps it would take her brain a bit to adjust to the new shape and location of these now-larger glasses.   She didn’t seem upset, only thoughtful as she said, “maybe another game of cards will help.”    Later she said things were okay.

Work Sheet for Reese’s Mom

My daughter came down yesterday morning with a brailled page giving me instructions on what I’d be doing for my upcoming homework.   The homework wasn’t quite ready yet, she told me, but she’d let me know when it was.   My instructions page said:

Instructions
Color the part that it says and color on the right spot.  For egsample it says blue and it also says blue terdle than you find a terdle on your page and color it blue. 

This morning while I took her brother to school, she remembered and went upstairs to create this work for me, which time-wise is impressive because I’m gone for about a half-hour.  The content itself is the most amazing to me though.   She’s maintaining an entire two-dimensional picture in her head, one line at a time.   She has a flat representation of certain objects and can translate them to paper in braille symbols.   Here’s what she made for me:

The first page was the color coding sheet:

The second page was the work itself.   I was to do the work with crayon, because she can feel the crayon wax on the page, unlike marker or pencil, and was able to check my work when I was done.

She told me before I began, well, showed me by taking my fingers and putting them on the page with her, that the bottom two rows of full braille cells was dirt.   The two rows above that was the grass.   The flowers had legs so they could move around and talk.   I asked about the perimeter around the picture and if I should color it and she explained that that was a field all around the flowers and the bee.

The Big Boy Update:  My son and I went to get new shoes for him after his school today.   This was precipitated by a need for new shoes as his current ones were pretty beaten up.   But more to the point, they had gotten lost.   My son picked out shoes quickly and then danced around in them for the rest of the day.   He loves getting new shoes.

The Tiny Girl Chronicles:  My sitter, Shane, came over to help out for a bit while I went to get my son and get him some new sneakers before our trip.   Are they called ‘sneakers’ anymore?  Am I the only one that likes to think of the movie bearing the same name every time I say the word?   Shane asked if she could take my daughter to Ben and Jerry’s for ice cream.   Before dinner?  Sure, why not.   I’m that great of a mom under pressure.   When I asked her later how much I owed for the cones she confirmed what my daughter had told us: it was free cone day.

POLLEN

I put the title of this post in all caps because I feel like the pollen is yelling at us right now.   It’s everywhere.   We have this yellow pollen period that coats everything in the south.   It has been called yellow snowfall, because at times it covers cars to the point you can’t clearly see the color.   There will be swirling eddies on the roads as the wind blows.   And it gets all over you.

The pollen by nature is inditvidually quite small.   It comes indoors with you on your clothes, even though you think you’re untouched.   It sticks to the dog’s fur (don’t get me started) and only abates with a serious rainfall.

Fortunately, we’re having one of those serious rainfalls, replete with thunder, lightning and weather station warnings.  This is good in that the overall population of pollen will be dramatically less on the surface and more down the sewers tomorrow.   But it doesn’t wash away what’s been brought inside to date.

Today I went on a walk with the dog while I was on a phone call.   When I got back my black shoes were yellow all over the toes, so much so that banging them together wouldn’t get it off.   The dog’s beard was yellow and turned her water bowl into dirty yellow water when she drank from it.   My pants were all yellow at the legs and that’s what I could see.

I carefully took off my clothes and deposited them in the laundry basket.   But I know some has gotten on the bed somehow—enough so that I’ll be itching and have a scratchy throat for the next week.   Washing won’t help because it will just return.   Fortunately, the yellow pollen season is a short one.   It’s a right of passage into spring in the south, suffering through until it all washes away.

The Big Boy Update:  My son was so happy about the thunderstorm today he wanted to go on the porch to watch the lightning.   This is a tradition we have, only right now the porch is pollen covered.   He went out anyway, not bothered by the pollen one bit.   I came out later and said he would have to take his clothes off when he came in the door, because they were going to be yellow with pollen.   It was all right, he told me, he turned the cushions over, he said.

The Tiny Girl Chronicles:  My daughter spent the day with Nana and Papa who have just returned from several months at their home in Florida.   She came home with two new pairs of Crocs and a Build-A-Bear Easter Bunny.   She fell asleep shortly after six o’clock.   It must have been a good day.

It Was Coming Eventually

This is a post about lady things.   If you’re not into lady-specific things, you might want to go check out the latest Facebook posts or Instagram or whatever and come back to this social media station tomorrow, because this post is about menopause.

And now that the squeamish have left, let’s get into it.  Bloodwork has show I’ve probably been perimenopausal for a few years now.   I didn’t have a full bloodwork panel run regularly and it wouldn’t have necessarily shown a hormonal trend because I had children late and then was nursing.   But recent tests looked like I was beginning the steps towards menopause.   The question was, when will it really start?

I don’t know for certain what the status is, but I’m pretty sure about where I am because I’m having regular hot flashes.   They’re not too bad; I’ve heard they can be severe including fast-onset drenching sweats, but so far they’re short in duration and not that extreme.   I wondered at first if it was just temperature fluctuations, but it’s happened enough times, multiple per day, over the past few months, which has removed any doubt in my mind.

I’m going in to see my gynecologist soon and I’ll find out more then and what can be done, if anything is really needed, to address the symptoms.   For now, I have to throw off the covers for a minute and then pile them back on again a minute later when I’m back to my normally cold self.

The Big Boy Update:  My son fought me every step of the way on several things today.   I did the, “you will have a consequence, but I haven’t decided what it is yet.   I’ll let you know when I do” option because I truly couldn’t think up anything appropriate at the time and also because I wanted him to be thinking about it, dreading it even, as part of the punishment.   When I did tell him what it was (write a birthday card for a teacher before dinner which is something he would have had to do anyway) he fought long and hard against it while I say in the bonus room with him, trying to be helpful.   He said, “Mom, why are you always angry or sad?”   That struck me.  Am I?  I don’t think I am, but maybe the children get negative feedback from me more than I think.   I’m going to have to think on that one.   A few minutes later though, my son was telling me what a great mother I was.   Sigh, parenting isn’t an easy path to travel.

The Tiny Girl Chronicles:  My daughter decided to go see a movie with her brother and father today.   We didn’t expect her to want to go, mostly because she can’t see it and she usually doesn’t want to go.   But she wanted to today.   Fortunately the movie had assistive audio so she could listen with headphones to the extra audio describing what’s happening in the movie for visually impaired people.   I think she liked the part of the movie she saw before she fell asleep.

The Leaf Collector

Aunt Rebecca and Uncle Dale came to visit today on their way to visit Rebecca’s father.  We didn’t realize how long it had been since we’d seen them until we counted back and realized it was last year at Olivia’s graduation party when we all were together.   How is it almost a year can go by like that?   Time, I swear, passes faster and faster the older I get.

This morning shortly before their arrival I brushed the dog, on account of she is perpetually in need of a good brushing.   She likes being brushed and will roll over in any position so I can get to various parts of her.   She’s also in need of a bath for almost one hundred percent of the time.   The exception being the brief period from when she’s just had a bath until the next time she goes outside.

She loves being outdoors, and I am, of course, exaggerating, but she likes to be in nature and nature likes to get all over her.   Today we all went out into the back yard and we let the dog run loose, with a long leash on her in case she decided to head elsewhere.   Typically though that’s not a problem—she wants to be wherever we are.  

In this case, that meant being under the platform swing my daughter was on.   The swing is high enough so the dog could comfortably lie under it while my daughter swung back and forth above.  The dog was quite pleased to be in the cool mud from the rain.   She ran around and got muddy paws and then lay down in the mud under the swing.   She went into the bushes and collected leaves.   She rolled over in the mulch.  

I don’t think I’ve ever seen her as muddy or messy as she was today—so I left her outside on orders to make as much of a mess of herself as she wanted, because a bath was imminent.   Only I couldn’t do the bath without some help.   I couldn’t walk her into the bathroom with the state of her paws, and I didn’t want to ruin my clothes with the state of her fur, so I enlisted my daughter to help.  

She and I went over the plan: first I would start the shower, then I would get the dog on leash and bring her to the door where my daughter would wait with her.   I’d come inside, get undressed and then come to the door where we’d have a dog handoff.   I would carry the dog to the shower and then spend however much time it would take to get the dog clean.

It turns out, it was quite a lot of time.   Matisse is a leaf collector.   Leaves love her.   They stick to her fur and don’t want to leave.   She and I were in the shower for twenty minutes with a brush, trying to get the leaves out that didn’t wash off with the shower wand.  

She likes being washed and is very calm, standing there, letting me run water all over her, getting her clean all over.   She is very patient too, which is helpful, because the pile of leaves in the picture had to be picked out one by one.

After getting clean she went into her cage to sleep for a few hours while she dried.   When she came out I brushed her and she is back to her super soft and fluffy self.  

Tomorrow I’ll be stingy on letting her stay outside, because I’d like for her to stay clean for at least one day before she starts her leaf collection again.

The Bad Big Boy, Tiny Girl and Mother Day:  Today was a challenging one for my son, daughter and me.   The three of us just weren’t getting along.   There was inconsiderateness, lack of respect, lack of gratitude, anger, yelling, rudeness and general not getting along across the board.   I won’t tell you which ones I’m guilty of, but it’s more than one of the things on the above list.   My children and I agreed tomorrow is another day and we are all going to try and make it a better one.