Wow

 I'm trying to keep this blog alive so that Frances (Lily) has access to old pictures, videos and memories.

People my age lack that electronic database of memories. I'm not jealous. I'M NOT!

Maybe a little.

I actually remembered a password from 2015.

Damn I'm good.

Don't Call it a.....

I was thinking a lot this morning. I was at the gym and feeling pretty weak from the workout I had yesterday. I had time, while sucking in air, to ponder my existence.

I'm stronger than I have ever been. Ever. I screwed up the weight this morning for quads. I was like, gee this is heavy. Maybe because I was doing 20 more lbs than I was supposed to? But I did it.

I'm forty-six. And I don't give up? I remember when I was running more and then got asthma. (I'm not sure how one gets asthma, but whatever adult onset) I ripped my shoulder ligament and I was in pain for years (finally got the right dr and PT). Still didn't stop me. Plantar fasciitis? I was limping for 18 months, wore a boot I couldn't sleep in, every night, and got better. Knees? Ganglionic cysts? Whatever, man. Onward and shit. Fibroids that had me hunched over in pain more days out of the month than not. Surgery saved me. yay! Shingles! In my damn eye. Oh yeah and then the rheumatoid arthritis. Crap.

I don't quit. I don't really know how. (also mad props to the medical professionals in my life) Don't get me wrong. I hurt. But I ask myself if it's enough to stop me and if it's not then on I go.

I feel like there's a metaphor in there somewhere. I know we all get dealt shitty hands in life. Not everyone survives their cancer treatment, or even childbirth. But you don't know where you'll end up. Keep trying. One foot in front of the other. Or as my hero Giles Corey would say: "more weight"

Nothing. That's what's going right today.

So, wow. I haven't posted anything since last June. Well, it's not like anyone follows this. Anyhoo, onwards.

Madi has been having a rough week which I chalk up to the time change. Fecking DST. This morning, she sits on the sofa and there's a blue cup next to her (boy, will I rue this observation). "Hey Madi, look at your clue cup."

She looks at it. "Blue cup please."

"um, that is your blue cup."

"Blue Cup Please!"

"Uh okay, but like that's a blue cup."

"BLUE CUP PLEASE"

Off we go in search of a mythical blue cup. We have to climb over a mountain of sheets because her diaper leaked last night. Which reminds me that I need to start a laundry. Anyway, no blue cup.

"Come on, Madi, let's go to school."

"BLLLLUUUUUUUEEEEE CCUUUUUPPPPP PPLLEEEEEAASSSSEEEEE"

Holy #*$&(#

"How about a cookie?"

Her cookie broke so she had to go and steal the rest of them. Fine. Just fine, like let's get this horribly written reality tv show out to the car. She refused to get into her seat. At this point, I text her teacher to say that I'm not sure when we're going to get there. Which means, of course, that now she'll get into her seat when I ask her to. *steam coming out of my ears*

Yes, we made it to school. It should be noted that Madi only likes Juicyfruit gum.

OMG This is also how she's been:

I thought she had gum in her mouth when I was giving her meds one night. She kind of hid it from me (I didn't care, I just asked her to open her mouth) but then I saw her move it across the front of her mouth. I said "you have gum!". She took it out and threw it at me. I'm not exaggerating.

Monday she was a mess. The bus aide said Madi's classroom aide got Madi to the bus and then took off. Madi threw herself on the floor of the bus. She's like 80lbs. The bus aide can't lift her so she said "You'd better get up and in your seat or your going back to class and waiting for your momma!" Madi got up and in her seat and said "go home". Whew.

This kid.

Everyone else is just keeping on keeping on.

Fuck this shit

Alright, alright, sorry about the swear words. Today has been ROUGH.

Lily doesn't really care for her sister. I've tried talking to her about this, obviously, and she has trouble even putting into words why she doesn't like her sister. I'm not going to say "Love her or else!" because 1) it's not going to work and 2) it will likely make her hate her sister more.

So we're talking today about this and Lily says something about how they will never be friends because they can't play and they can't really talk to each other. I, very patiently, start to say "Madi will never have..." and that's as far as I got because the thunderbolt hit me and I started bawling.

Madi will never have friends like Lily has friends. She'll never call or text someone. She's friendly with the other kids at school, usually, but will she ever form a bond of friendship with someone that will last the test of time?

Unlikely.

And yes, I'm crying again so sorry about the typos. And grammar. And shit.

So then the behavioral therapist comes over, who is awesome. She starts talking to me about how I can reclaim my house and that it doesn't have to be driven by Madi and what Madi wants. How I can take control over my life again.

Well, cue another waterfall from me.

It's been kind of a gut wrenching day for me. And then the shooting in Orlando and I'm horrified by this world that I live in. Arguments online over gun control, no mental health, NO Islam and holy shit, can we do something about this? If prayer worked I would be a size 6.

But I digress. (Hey, there IS something that I'm good at!)

That's how it gets you, or me, rather. Going along, through life, as best I can, trying not to screw up too much and ka-blam! One right in the kisser. Someone very wise once told me that I will grieve for my child again and again throughout her life. It's mourning the life I had imagined for her before her diagnosis. And my friends, it is a bitter, bitter pill.

But life goes on, and I pick myself up, with garlic-cheddar biscuits, and keep on keeping on. Sometimes with tears on my cheeks and a bitter taste in my mouth.

My MREs

Why so possessive you ask? Because I haven't served in the military and I'm sure that I'm doing some things wrong, but I figure other people have no idea what these are so this is just a little introduction.

First up - I feel like it's Christmas when I open my MRE bag. Chicken with Pasta in Pesto Sauce.  Ooh lala!

But what other treasures are inside? We'll start upper left hand corner and go around clockwise. We have the empty container, in which the food will be heated. Small packet is squishy processed cheese. Corn nuggets (aka corn nuts). "Condiment" bag. Chocolate pudding powder. (YAS!) Beverage heating bag underneath "Italian" bread sticks. Spoon. Chicken with pesto and noodles. Carbohydrate electrolyte beverage powder. (Lily loves them. They remind me of reconstituted gatorade. I hate them.)

 

Hokay. One of my favorite parts of this - the instructions."Rock or something" Not too fussy. The heater actually works quite well. Chemical reaction, something, again these are great for when you have no power, etc.

The contents of the "condiment" bag.  I'm not really sure what to call it. Again, clockwise from upper left corner: non dairy creamer, ground red pepper, instant coffee (says "pure coffee" on the back, thank Cthulhu), sugar, paper napkin, matches, gum, salt, and wet wipe. Seriously, these things have everything.

Squeezy cheese on some almost 5 year old italian bread. I lived. So far.

Ahhhh the main course. Did not suck. Quite a bit of chicken, almost no noodles. Flavor was... well, I ate it, okay? All of it. So it was not the best thing that I've ever put in my mouth, nor was it the worst. I did NOT eat those two bread sticks. 

I was going to make you imagine the chocolate pudding but in for a penny, in for a pound, right? We're not British, I know, just whatever. hmmmm If Jello pudding made a pudding cake that's what this would taste like. Again, not horrible but it's almost 300 calories for that little pouch so I'm going to see if I can pawn this off on Lily.

Fin.

[Insert self indulgent title here]

I put my sweet, old cat Riley down yesterday. There are a bunch of reasons but I still feel like a dick. I kept thinking that I needed to feed the cat before I went to bed. But no cat.  I heard a sneeze last night and thought it was him.  Turns out that all this time it was Lily.  Almost turned down the cat food aisle at the grocery store. Keep looking for him (so I don't trip over him) when I walk through the house at night. 

I thought about it and I've had cats continuously for at least 20 years.  (I lived in Australia for a year and my cats stayed in Vancouver - if we count that then I've had them since 1989) More than half of my life.

And I swear that the dog knows. He keeps giving me these looks.  It took me a while before I could even think of emptying out Riley's bowls.  I'm going to give his stuff away. The spot where his food used to sit on the counter is giving me little heart aches every time that I look at it.  Sigh.

I held him as he passed and wished him a speedy trip to a better place.

Sigh.

- Crazy Catless Lady

Point Defiance

Because you have to have a snappy title.

So, this kid.

This. Kid.

Madi is still doing speech therapy on Wednesdays at UVA. Even Pedro has noticed that Madi's speech is improving.  Yay!

However.

I'll try and set this up. Madi likes to pick her nose and we normally don't call too much attention to it because then it becomes a game.  But I was trying to get her to stop during therapy and was using a tissue to try and clean her nose.  Then, for some reason, Madi decided to put her feet on the table.  She pushed back in the therapy chair (for lack of a better description) and we were alarmed and ran behind her, which gave Madi the chance to put her feet more solidly on the table.  Then she jammed a finger from each hand, up each nostril and looked at us.

"Whatch gonna do now?"

Okay, she didn't say that but you just knew.

I cannot wait for this behavioral therapy to get started.  Should take a couple of weeks to get things going.  None of us, parents, teachers, etc., have any idea of how to deal with her.  She can do things, but won't want to do them, and that's where we're at.  With our feet on the table and our fingers in our nose.

Habba what?

I really couldn't think of a post title so I went with a Yo Gabba Gabba quote. 

This Madi of mine.

Yesterday, the bus driver told me it took three people (3) to get Madi into her seat.  She wanted to lay on the floor of the bus. 

This morning, I could not get her jacket on her.  She kept on pinching the inside of the sleeve so her arm wouldn't go down into it.  I have no idea where she learned it.  I think it's what the therapists call "an original thought". Brat.

Hopefully, we have a behavior therapy assessment on the 27th. Man.  Her behavior is probably the most challenging part of raising her.  She can be very sweet and lovely and she's learned to hug us when we get mad at her.  But we can't have her being so combative.  We all offer her choices, but she still has to do what we ask.  Is the bus driver supposed to drive with her on the floor of the bus? Of course, not.  Am I supposed to let her walk outside in freezing temps? Actually, I did do that.  Cause and effect and she's half-Canadian. She never complained though.  Little *grumble*

We've tried to set expectations for her and consequences because we know we won't be taking care of her one day and we don't want her to be horrible.  The better she gets along with people, the better for her as well.  That's so hard to teach though.

Oops

We've had kind of a tricky week.

I haven't told Pedro, though he'll find out from here, that Madi has pooped twice in my room. She's gone a minute, definitely less than two and it just happens that quickly.  And I don't mean, just pooped.  It's on the walls, the blankets, etc. It's a poopapocalyse. At least that's what I've named them.

And Pedro has started back at school so it's me and the girls for several hours on Mondays and Wednesdays. But Pedro has to redo a test so it's also Thursday and Friday this week.  I'm going to have to check my Moscato supply.

So I'm not even sure what day it was, I think it was yesterday? I had to go into town to pay some bills and I never brought my phone in with me from the car.  I had a lovely, quiet afternoon as a result.  But it turns out that I missed texts and calls from school.  Madi threw up.  I didn't find my phone until about 15 minutes before she was due to come home on the bus so I called Pedro, he didn't get the call from the nurse because his ringer was off.

Could we look like worse parents?

Oh yeah, and I hadn't sent a lunch in with Madi because I hadn't cooked the night before.  I wasn't feeling well.  And, as life was conspiring against me, I was out of ramen noodles for her.  I sent in a ton of snacks, okay?

So no lunch, no one picking up the phone...

I'm not sure if this was also the day she called her teacher a "motherfucker".  I think this was the day before. I have a potty mouth. I don't swear at Madi but if you've ever been in a car with me, or talked to me for five minutes, you know I swear a lot, just in general.  Well, I was pretty horrified and I'm thinking they think I'm the worst mom ever.

I wanted to touch base with them today after dropping Madi off from therapy. They push the kids in class.  Special needs kids take more time to learn things and sometimes need more of a ... push.  Well the kids get angry and frustrated.  Especially Madi.  Apparently she said "You are a motherfucker, okay?"  The teacher had to leave the room. Then burst into laughter in the hall.

Madi has a pretty limited vocabulary.  So she said a five word sentence.  That's amazing for her.  The subject matter was probably inappropriate.  Cough.  It's a weird thing.  She hardly ever swears at home.  She swears when she's mad, but even then it's rare.  So she has to be quite upset to pull out the B word or in this case the MF word.  And it's wrong, but at the same time, here's this kid that has trouble communicating and she got all of that right??

Sigh.

Onwards. Today they were showing me how she can pick out her name on a name tag from all the other names.  And she says Thompson.  Thomp-ah-son.  But it's adorable.  And she's doing SO well in speech therapy.  She catches on quickly. We're trying to build on what she knows.  I'm so proud of her.

So then I get home from school and I smell poop.  I think it's the cat.  I say, Riley, did you miss the litter box? shooo  He gave me a look.  I don't know what made me turn around and look in the living room but there it was. Mount Doggy Diarrhea.  I know he went before Lily left the house because I was trying to get him back in so he wouldn't try and get on the bus with her. So I know foh sho. K?

I think I've earned a nap.  Peace.

50

I've been trying to do more for Madi.  Help her reach her full potential.  God that sounds corny.  Anyway, since she's receiving the EDCD waiver (I still don't totally know what that means) we can move forward with more therapies for her.  She had a speech evaluation in December and I was reading through the notes last night.  One very sweet part said she was very engaged in the activities and was very social.  THAT's a big chance.  When she was little, not so much.  So that warmed my heart to read.  But then... out of testing scores. If 100 is the mean score of kids her age, she scored around 50. Sigh.  I know she has a significant intellectual disability but it's always hard to see in black and white. 

Pedro and I were talking about this the other night.  Madi was snuggled tight against him, watching a show.  She's only a young child, mentally but that means she still acts like a...young child.  She's still innocent and loves to be held and snuggle.  (and throw her poop on the wall, but that's another story)

I don't know how much things will change with us getting some help.  I've learned over the years to be conservative with my enthusiasm because it never turns out how you might think it will.  And I'm tired of having my hopes crushed.  Should I start writing an emo song?  Good grief.

And some princesses don't appreciate it when you sing the ABC song.

"Light, please."

Kind of a boring phrase, right?  It set my heart aflutter the other night when Madi said it.  Her verbal skills have been ... there's no appropriate word for it.  She's learned to say certain things to get what she wants "I want popsicle", for example and she's started morphing that into "I want banana" or, more shockingly, "I want up".  It's starting to make sense to her.  If she asks for things in a particular way, she can apply that request to other items. 

We're just amazed.  I never thought she'd make 3 or 4 word sentences.  Especially ones that make sense.  She's started expressing when something hurts.  She's started asking for hugs. 

She was assessed as being moderately to severely delayed.  And this doesn't really change that - she kind of communicates like a 2/3 year old.  But hell's bells, it's coming along. 

I didn't even know what to say the other day when she said "But it's mine".  I think I was taking away the laundry basket.  (Nice try, kid)

I have been depressed for a long time.  Feeling like, things were just never going to change.  I'm so proud of her and so extremely grateful for the support she gets at school.  I KNOW they've helped her a ton. 

Now about that potty training...

Best laid plans

WAAAH so I was supposed to finish up my training today.  However, Pedro has had a computer issue at work and he won't be home in time today to watch the girls.  Frack.  I'm getting how it all works.  I was worried about dealing with the kids, finding the stops, etc.  But once you drop one kid off, you have a few seconds to check where you're going next, and the bus is quiet while the kids transition so it's a good time to yell and get them to sit down.

So you know, I'm getting the hang of it.

Unfortunately, I have zero sense of direction so I have to do a lot of lefty loos and righty roos while I drive to remember. 

What?

And those buses do NOT stop easily so I go super slow and keep the ambers on.  Drivers stuck behind me LOVE ME.  Not.  But I'm learning and getting the kids home safe and that's what's up.

I am SO crushed.  I really wanted to wrap this training up.  I'm only going to be a sub and since that can mean a lot of changes in times, I can do only do afternoons.  If I get offered a route and I can find a place to drop the girls off or whatever, then that's awesome, but until then.... It just feels like it's never going to end.

The girls are good.  Pedro's good.  I'm okay.  lol  Can't really ask for much more, can you?

Puppy Love

I'm so happy for Lily.  She loves her third grade teacher.  And how did THAT happen?  She's in 3rd grade?  Preschool was like, yesterday.  Anyhoo, Ms Davis is fun but a little strict and I think Lily does well in that environment.  Pushes her a little. 

AND Isaac is in her class.  During a tornado drill, he's the one that said "Lily if you die in a tornado, I die in a tornado." 

Good grief, he was 7 at time. 

Anyway, he's carried a torch for Lily since first grade so this should be interesting.  She's told me that he's actually gotten in trouble defending her in the playground.  She doesn't really know how to act.  She likes him and when I've seen them together they do nothing but just pick on each other.  It's like they're already married.  ha!  Anyway, I told her just to enjoy having someone who cares for her.  I guess I should add that if he starts to annoy her to tell him to stop and/or to tell the teacher but I've never got the impression from her that he is bothersome.

But how many people out there would like to have someone who is genuinely concerned with our well-being?  Shoo.

She was drawing a cat yesterday and someone made fun of the tail she drew.  Well, you know Isaac wasn't having ANY of that. 

So cute.  And yes, we finally got the bus this morning.  :)

Time

How does time go by so fast?  Lily is just NOT a little kid anymore.  I'm just blown away by how she thinks and talks.  She even changed one of her sister's poopy diapers the other day and cleaned up after.  I know, right? 

Even Madi.  She's still very toddler-ish but can blow us away when she wants something.  She's started walking up to people and saying "pleased to meet you"  lol  that's about as far as her conversation goes but she's trying.  She wants to interact with people. 

It would be terribly nice if she'd stop pooping on the floor, however.

Anyway, I'm still in training for school bus driving.  It's a long road.  I think it can be discouraging at times.  There's a lot to memorize.  I don't mind learning new things, but it's the DMV road test that kind of unnerves me.  Not even the road test.  I'm not scared of driving the bus.  There's this thing called a pre-trip inspection.  You may know what you're looking for but you have to enunciate everything that could be missing or wrong with every vital piece of equipment on the bus.  That's a lot to remember.  And my trainer and I kind of butt heads.  He wants me to just memorize it whereas I want to know what something does so when I look at it I know what could break down.  Hence the discouraging part.  But Pedro's out of town this week so I have a few days just to chill. 

HA

I'm not training this week but I do have the girls.  Lily has started her orthodontic treatment.  She has spacers in her teeth.  I think she gets the bands put in on Friday.  I think.  Maybe more measuring?  LOL  I have my hands full. 

I'm just so blown away that in 10 years Lily will likely be heading off to college.  She loves art but she ate a grilled cheese sandwich while watching hernia surgery on a dog.  Intestines and all.  I couldn't look and I wasn't eating.  My point is, if you have iron guts like that, may as well head into the medical field.

Keep on keeping on

Shooo!  So I've applied to work as a county driver for the girls' school.  Well, in Fluvanna there are four schools, but you get the idea.  I made it past the first hurdle, which was having a clean driving record.  Next up, I had my finger prints done today.  Then, if I pass the background check, it's onto a week of classroom training.  Then, I think, there's a DMV test.  Then there's the actual driving???  I kind of lost track.  It takes months to complete everything.  Just trying to line up my duckies in a row.

And you know, I've spent a lot of time and mental energy trying to figure out what to do.  So much of my time is fixated on the kids.  I don't think I said that right.  I can't do things because I MIGHT have to watch the kids.  I can't lock in my time, unless it's evenings or weekends and you know, Pedro works full-time so watching the kids while I'm at work is kind of a bummer.  Yes, spare me the kids are so great line.  They are, but they can also be royal pains in the butt and Madi needs to be watched constantly.  Which is exhausting.  Grandma can back me up on that. 

So we need a second income and I can tell you from experience that quitting for the summer to watch the girls and then reapplying in the fall really sucks.  The whole process of looking for a job.  Just applying for one job can take hours. So yeah, I'd like to not have to do that.

And then there's just random days off from school.  Or "Staff Day" as the school calls them.  It's hard when you're in an office to be like, uh yeah, I can't work because of a staff day.  But hey, Sonia, why can't you use a baby sitter?  Well, I did put some feelers out there and people got in touch with me who make more an hour than I do so... paying someone more than I make to watch my kids.  Yeah.  Not going to work.  And Madi, isn't 100% toilet trained so a lot of places won't take her and she still doesn't talk so well, so I'm not leaving her with just anyone.

Driving a school bus was one of the few scenarios that Pedro and I came up with (okay mostly him) where I can work, be on the girls' schedules, have some time to myself during the day, and work with people who completely understand what working parents go through. This is, for me, a big deal.  I can hopefully get a job where I'll feel settled and productive (are those mutually exclusive?) and not have to stress when one of the kids gets sick (they get to sit behind me on the bus).

Getting the picture?  There is very little in the way of good options for me.  Are bad options even options?  Wow I need some sleep.  So anyway, fingers and toes crossed.  There's a long road ahead of me.  Here' s a pic of toddler Lily for randomness.