And On a Sad Note

I got a phone call from Margaret today but I couldn’t take it.   Then I got a phone call from Uncle Jonathan, Margaret being his girlfriend.   I knew something must be up but I couldn’t take either of the calls at the time.   My husband got me a while later and told me Uncle Jonathan’s father had died due to complications in surgery today.

Tonight Jon came over to our house to have dinner with us.  In part we wanted to ask a million questions but we also knew he was drained from having one of he most surreal days of his life.   Hearing over the phone from a doctor he didn’t know about a surgery he didn’t know his father was having had ended in complications ultimately causing his death—and oh, could you call your brother and let him know because we haven’t been able to get in touch with him.

Following that call, Uncle Jonathan (honorary uncle but definitely considered family in our house) had to call his brother in what he calls one of the worse things he’s had to do in his life.   I can’t imagine because I haven’t been there.

We talked about all the complexities of managing his father’s estate, especially since both he and his brother are states away and not involved with his father’s affairs.  It’s a lot to find out and once that’s done, it’s a lot to do.   And funeral?  What did he want?  What needs to be done?  Who needs to be notified in his practice (he was a doctor)?   All these are unanswered questions that loom over Uncle Jonathan and his brother in the middle of having to deal with the grief of unexpectedly losing their father.

Our thoughts are with him.  My daughter expressed her sadness to Uncle Jonathan about his father’s death.   She said she was sad too.

The Big Boy Update:  My daughter has loads of eye drops.   The other day my son asked if he could help and both my daughter and I said sure.   He very carefully helped put two drops in each of her eyes and I told him I was so glad he wanted to help his sister.

The Tiny Girl Chronicles:   Today my daughter had lunch with her Vision Impairment teacher from last year.   We love Raffaella.   She has been such a kind and caring teacher and a wonderful resource for us for all things related to vision impairment.   Raffaella coordinated the lunch and when she told us her daughter, also visually impaired, would be joining them my daughter was excited.   Her daughter is in college but she and my daughter became fast friends.   As they dropped her off, Lauren said she was available if we needed anyone to watch the children.   I can tell you this, I’m excited about having her come spend time with the children.  I think my daughter is going to love having her come visit.

Some Things

Here are some of the recent things my children are into, have said or done.  I have to thank friends, family, sitters and neighbors for helping me out with this blog.   They all know i’m looking for interesting or funny things my children say.   Thanks for telling me about the things that happen when I’m not around.

The Big Boy Update:
Zach King Magician - My son suddenly wants to be a magician.   This is good, because his grandfather has been a magician all his life and I’m sure will be glad to be his mentor.   We weren’t sure where he was getting his enthusiasm and drive from until we found out he was watching Zach King’s channel on YouTube.   Last night he tried to hide dad’s sunglasses in his sister’s bed and the car key I’m not sure where because I intervened.   He was going to make them magically reappear when dad noticed them gone.    I convinced him something less breakable and crucial might be a better choice so he hid the toothpaste up on the shelf in the closet in a suit case.   I forewarned my husband who was very happy to have his magically disappearing toothpaste reappear.

On the Workbench - I came out into the garage the other day to find my son standing on our workbench, reaching to the very top of the tools hung on the wall.   I asked him what he was doing and he said he needed the sledgehammer because, “I’m trying to make my shoe become a rocket ship.”

Losing His Mind - Today I don’t know what happened to my son.   He lost his mind.  All he had to do was put on his clothes sitting right in front of him and then he could have the one thing he desperately wanted.   His agony dealing with the simple act of dressing was pretty darn epic.   He hated everyone.   We were all mean to him.    I tried to connect to him emotionally and physically but he didn’t want to be hugged.   I made him a glass of some juice he loves in hopes calories would help but he refused to drink it because I was one of the bad guys keeping him from his heart’s desire by requiring him to put on clothes.   Eventually he gave in but by that point the thing he had wanted to do he no longer cared about.

Hobby Kids - My son watches this YouTube channel called Hobby Kids.   He recently wanted to be adopted into their family which I explained would be complicated.  Now he’s decided he just wants them to come to his birthday party—which is six months away.   We just got his iPad screen fixed but we made him pay both in his own money as well as in time because we didn’t get the iPad fixed for some time.    My husband told me when the iPad broke and my husband took it away my son said in a sad voice, “I’m gonna miss Hobby Kids…”

The Tiny Girl Chronicles:
Simon Says - My daughter loves to play Simon Says.   She also likes to play the quiet game when she thinks we’re all talking too much.  She’s come up with a new game now though as she yelled out at the dinner table, “Simon Says one, two, three, quiet game!”

Losing a Tooth - My daughter doesn’t have any loose teeth yet; we ask from time to time.    Yesterday morning my daughter came downstairs to find me when she woke up.   She said, “I think I lost a tooth.”   I asked her to open her mouth so I could see but she stopped and said, “but maybe it was a dream?”   She still wasn’t sure so she asked me to check.   With all teeth still present we decided it must have been a dream.

Feeling Happy - My daughter is bored a lot.   I’m going to write about that an upcoming post because it’s something my husband and I feel like we’re failing at—keeping her occupied and happy.   And she’s said as much, indicating she isn’t being mentally stimulated because there are so few options of things she can do by herself and adult help is limited due to all the other things we’re doing.  So when my daughter said tonight, “where’s the purple ball?  Because I feel really happy today.   I’ve never felt so happy before.”  I have no idea why she was suddenly happy but we’ll take any happy we can get.

Getting the Puff Out

Back in time, around when my daughter lost her vision, my daughter had a lot of very large bumps on her butt.  (I’m not going to say backside or fanny or fundament or any of those other words because we just call it their ‘butt’ in our house).   Every time we’d talk to a doctor they’d ask a lot of questions, one of them being did she have any rashes.   And at the time she was wetting her pants because she didn’t want to take a break from what she was doing to go to the bathroom.   Doing that frequently gave her a mild rash but mixed in with the rash were these hard, large lumps.

This went on for a while with them getting bigger and then smaller and then new ones appearing.   Eventually we went to a pediatric dermatologist who didn’t know what they were, nor did her associate so they sent us to a specialist.   Fortunately, we’d already been seen by that specialist when my daughter had her full workup when she was admitted after the initial EUA when we found out her retinas were detached and the host of other mess was going on with her eyes.

Two biopsies later we found out she was having abscesses—deep abscesses—but we still didn’t know why.   She was put on an antibiotic to help them resolve because, get this, the abscess material they extracted didn’t culture into anything specific, which might have just been how the sample was handled or a host of other reasons.   Since the punch biopsy procedure had been done to her twice, both times with her in terror causing us to need six people in the room to hold her down (mind you, she’d been numbed, but still, trauma is trauma) we all thought going for a third round just wasn’t worth it.

The antibiotics resolved them and since that time we’ve only had one other incident on her leg.   One day after weeks of this thing on her leg looking like it needed to be lanced as it was close to the surface, I told my daughter we had to do something.   She probably hated me for the rest of the hour (she recovers quickly) and I was able to break through the surface fairly easily with the result being oozing brown liquid coming out.    That particular abscess healed but because it was there for so long she has a scar in the spot still.

Since that time over a year ago nothing has happened.   Until my husband noticed something, again on her leg, this morning.   I woke up to my daughter screaming.   I don’t know that she was in pain so much as the fear of pain—of being ‘poinked’ as she calls it.   My husband got the spot open and applied a bandaid.  

When I got up my daughter told me dad had, “gotten the puff out of my knee”.   Hopefully that’s all the ‘puff’ we’ll encounter and there won’t be a return of the abscesses.   When she had them all over her butt it was uncomfortable for her to sit and she wouldn’t let any of us get near her to look at them.  

The Big Boy Update:  My son has been very interested in Mine Craft.  My husband has fixed it so my son can turn on the Xbox and talk to the speaker to get Mine Craft started.   I’ve got to tell you, he’s pretty creative and has built some interesting things.    My father-in-law was visiting over the holiday and was asking my son what he was doing.   Papa said, “I don’t know how to do  Mine Craft.”  My son replied, “c’mon, it’s the same as when you were a kid.”

The Tiny Girl Chronicles:  My daughter came into the room this morning and I told her about something—I can’t even remember what it was I told her now.   She said, “yeah, that happened to me too…only it didn’t.  It was something else.”

The Candy Stand

The children were running around the house this afternoon dressed up as a ninja, a lego ninja and a candy can girl.   And if you’re counting, I have only two children which means we had a neighbor’s child over.   The dress up was fine but then they decided to add in an interesting twist—candy.  

Specifically, they wanted to have a “Candy Stand”.   It’s like a lemonade stand only they were planning on selling candy.   Fine, I said, only you can’t eat any of the candy.    They were fine with that and assured me they’d only sell, not eat, the candy.

They got everything ready and even improvised ways to flag down passing cars.   We helped them with a money collection container and gave them water bottles and some chairs to take to the corner of the street, one house up.

Their candy stand was open and I had to leave, so as I drove by I was their first customer, stopping in to buy a piece of candy and deliver drops to my daughter.   As it turned out, I had no change and no bills smaller than a ten so I asked for some change later after they reaped large profits.  

I headed off to a meeting and got a phone call an hour-and-a-half later from my husband saying when I got in could I check on them because dinner was long overdue and they were still at the stand.   In the meantime our neighbor had helped them with some lemonade and—get this—we found out they’d been eating all the candy.   Shocker, right?

They were happy (and sugared up) when they came home for dinner, not to mention full.   They had made two dollars each but that success was suddenly tempered when they found out they weren’t getting dessert after dinner because they’d already eaten dessert before their meal.

The Big Boy Update:  My son ran over to my husband tonight holding his knee saying, “I got a boo boo that just got boo booed again.”   My husband told him sometimes scabs came off and that was okay.   A bandaid fixed my son’s concern.

The Tiny Girl Chronicles:  My daughter fled from the deck into the house and headed over to the porch after dinner tonight, trying to escape from her brother.   She said, “if my brother comes out here to the porch I do not want to be with him because I’m not a good Greyson fan anymore—he’s a zombie.”

I Ran:  Yes, I ran.  I know, I thought I’d forgotten how to exercise too.   My best friend and I ran five miles this morning before our husbands had to leave and we had to return home to man the children.   I survived.   Actually, it wasn’t even that bad, but that’s largely due in part to the company.

Did She Faint?

Let’s talk about fireworks.   Last night.   Fourth of July.   My son was excited.   My daughter was sort of excited.    I’m not sure if she was fully sighted if the situation would be different because it’s getting hard to know how she would have reacted given the amount of time she’s been visually impaired.   But no matter now because he’s a he and she’s a she and they both have very different personalities.    She’s cautious and he’s crazy and there were plenty of fireworks my in-laws had purchases for last night to be lit up on the street to entertain both young and old alike.

We started the morning with those pop snap things in the sawdust that you throw on the ground that go bang.   My son loved them.  Apparently my daughter did too, even though she’s more sensitive to sound.   That’s where the similarities ended.

When it got dark we pulled out the sparklers.   There were short, medium and long—the long being the ones I got because I thought flame, sparks and fire further away from my daughter might be a good thing but no, she only wanted the short ones as the long ones scared her.   My son, you ask?   All good.   All exciting.   Most of this involved him running around yelling in the driveway.

Then my husband got the real fireworks out.  And real fireworks involve noise, specifically loud noise.   And that’s where my daughter drew the line.    She didn’t like it.   She couldn’t really see it, even though it was a brightness in the dark, although I did see her tracking the roman candles at one point.  

What my husband tried first were her headphones for her iPad.  That worked a bit, but she could still hear the noise so I got his noise cancelling headphones and stuck them on her, hoping it would make a difference.   Yeah, no go.   From the street, while my daughter was backed up against the front door my husband said in a normal voice, “this one says ‘loud and clear'”.   My daughter cried out, “I don’t want loud!”

When the bangs and whistles started to happen my daughter opened the door and fled inside.   My son, who at this point had gotten concerned about her came up to me and asked (when the lights and sounds were over), “did she faint?”

The Big Boy Tiny Girl Who’s In Charge Story:  I was working with my neighbor’s daughter today, teaching her how to make jewelry, showing her how to open jump rings, make wrapped loops, lending jewelry making pliers and helping her select supplies to take home with her.   My daughter wanted to be involved but she really couldn’t help so I told her it was a one-on-one type of thing.   So she said, “can I be in charge of the boys then?” referring to my son and his friend who were over.   I told her certainly, only I wasn’t sure if they’d listen.     Fifteen minutes later I came downstairs to find the boys watching something on television they shouldn’t have been watching and eating Pez candy for a snack (at dinner time).   When I asked my son what he was thinking he said, “but you said my sister was in charge and she said it was okay.”

Out-Energized

Some days I have a lot of energy, hopefully those days coincide with the days my children are out of school like on the weekends.   Some days I don’t seem to have the ability to keep up with them.   Today has been one of those days.

The title of this post, out-energized, isn’t about my children though because they can always top me when it comes to energy and enthusiasm.   Today I’m talking about my in-laws.   They seem to have their own fuel cell, battery pack, tank of gas, etc.   I don’t know how they do it, but I love it when they come to visit, as without a doubt, do my children.

Fireworks are going off in the front yard now and my daughter is crying so I’ll be back tomorrow, hopefully with more energy, to write about another day.

The Big Boy Tiny Girl Snaps Update:   You know those snaps that you throw on the ground around about Fourth of July time that make a bang?   This morning my children must have gone through five boxes apiece with my mother-in-law and they had a blast.   My daughter tonight with the louder fireworks noises however isn’t so thrilled.    Maybe she’ll like the sparklers, sounds take her aback more than other people with her diminished vision.

Travel and Commitment

As a Real Estate agent we work with all kinds of people helping them find or sell their homes.   Different people have different expectations of their agents.   One of the most common is commission and how much an agent gets paid and where that money comes from in the buying and selling process.   That’s a topic for another blog post.   This post is about more about time commitment.

Usually clients are respectful of agent’s time, although most people have high expectations that their agent will be available whenever, wherever and for however long they need.   And that’s fine, that’s our job—we’re there to help them when we can.  

Every now and then there’s a client that’s completely disrespectful of time and it feels like you’re being used more as an agent than actually being there to help.   But again, that’s not common and certainly isn’t typical of most clients.

I had a client this weekend that just confused me this weekend though.   They were traveling from out of town, a distance that I knew was far and later found out was all the way from Nebraska, taking multiple days to get here.    They wanted to look at houses but weren’t particularly responsive in email or text to help me narrow down what to show them.  

We thought we’d found some candidates but given the current market, two of the five houses went under contract before we could get to see them.   This was in part because they cancelled and rescheduled with me on time and day four times.

Today we were finally going to meet when I got a text saying they were running over an hour late and could we move the showings (for the third time) to a later time.   When we finally met I found out they were driving over three hours today to see houses before returning to Nebraska.

I’d been working with the wife, who was very nice.   The husband once we met him got more involved and we discovered he had entirely different criteria for what he wanted and the houses we’d set up weren’t anything he was interested in seeing.   We stood around for an hour in the first home (which was new construction and had dark hard wood floors—both a no go for him) before we abandoned the remainder of the showings.

They asked me to send them some listings with new criteria (criteria I would have loved to have from the start) and then, apparently, they planned on heading back home in the morning on another two day drive.

They are relocating to the area and do need a home and we’ll continue to work with them to find them something that fits, but it seems to me like they could have saved themselves time and driving hours if they had been more communicative from the start about what they were looking for collectively as a family.  

The Big Boy Update:  My son is playing Mine Craft this afternoon.   He had his headphones on and was talking to himself as he played.    I heard him say to whatever creature he’d just created, “that’s so cool you’re blind.  I always wanted to be blind.”

The Tiny Girl Chronicles:  Nana was singing to my daughter this afternoon.   My daughter said to her, “do you know what, Nana?  Your voice sounds nice as it can be.”