This is My Life

A Different Reason

As I sat having coffee with my mom a while ago our conversation drifted here and there.

We talked about how things were going with Vista, my brother’s move, my father’s asshole ‘friend’ who only calls when he wants my dad’s help with something (that’s a whole other post).

She told me about the movie her and Dad had seen the other day and how her friend’s daughter was getting married and she was trying to figure out what to get her as a gift.

We talked about the episode of Piers Morgan she saw where he interviews Joel Osteen and the pastor talks about homosexuality being a sin.  “Which is silly, really, because it’s not a sin.  It’s just the way they are. People like to make the bible say whatever they want it to” explained my mom.

***schreeeeeeeech***

Wait… What?

I’m pretty sure my eyes must have popped out of my head.  You see… growing up we were raised Catholic.  And taught to believe that homosexuality was a sin.  Which is probably part of the reason my brothers and I stopped going to church.  We thought stuff like that was a load of … well, suffice to say, we didn’t agree with it.

But any time the topic came up when we were teens, my mom didn’t hold back on her opinion… opinions that fully agreed with the church.

“Ummmm… so…uh.. since when don’t you believe it’s a sin?” I raised an eyebrow at my mom.

“I’ve never thought it was.”

She sounded surprised.

I laughed.

“You used to.”

“I did?”

“Yeah Mom. Trust me.  You used to be quite vocal about that subject.”

“Really?”

“Yup.  But I guess that was before your aneurysm.  You’ve changed a lot since then.”

*******

This year marks the 10th anniversary of 9/11.  It’ll also be 10 years since my mom’s brain aneurysm almost killed her.  She has no recollection of the terrorist attacks. Those days never happened for her.  She was locked safely inside her mind, while her body was fighting to survive in the ICU.

The mother we knew went into that hospital.  But a whole new and different person came out.

Ten years later I am still learning about this new person.  About her likes and dislikes.  About what she finds funny.  About what her convictions are.

This person is different from the mother who raised me, and yet, she is still my mom.

For so many, September 11th marks the day that their worlds were forever changed.

The same is true for us… just for a different reason.

Silly Simple Words

Thank you to everyone for your hugs and love over the past few days.  They’re both needed and appreciated.

We’ve been watching V like a hawk the past few days.

Super vigilant and on high alert.  The ultimate helicopter parents.

It’s hard not to be.

Luckily though, it seems like the after effects from V’s seizure are mild.

She was a bit unsteady on her feet Sunday morning, but that has corrected itself, and we haven’t seen any other physical issues.

There doesn’t seem to be any behavioral issues from the seizure, either (everyone cheer!!).

It looks like this seziure went after her language center instead.

She’s had seizures in the past where she lost words, and when as a toddler you only have a few words to begin with, it meant she lost her ability to speak.

Thankfully, this isn’t the case this time.

But it’s the weird things that you take for granted that hits you like a punch in the gut when you least expect it.

Last night V wanted to dress up as a kitty cat.  She loves to dress up as a cat with a nose and whiskers painted on her face using my eyeliner.  A couple of weeks ago, I ordered a cat costume for her off Etsy.  Just a little set of ears and a tail.  And so last night when she wanted to dress up, I mentioned that we’d have to wait for the costume to come in the mail.

“Mail?” she said.  “You mean like press send?”

“No sweetie,” I replied.  “Not email.  Mail.  It will come to the mailbox and then we can go get it.”

“Mailbox?” she looked at me confused.  “What’s mailbox?”

“You know… a mailbox… don’t you remember how we walk to the mailbox to get the mail?”

A memory.  A word.  Something simple, and really, without a lot of meaning.  But *poof*, it was gone.  She had no idea what I was talking about.

I saw it again this morning.  She wanted to dress up in one of her play silks.

“Can you tie it around my elbow?”

I looked at her, “Where do you want me to tie it?”

She pointed at her shoulder “My elbow.”

I sat next to her and gently said, “That’s your shoulder, not your elbow.  Where’s your elbow?”

She again pointed to her shoulder.

We proceeded to do a body inventory.  Body parts she’s known and been able to name for years.

She knew where her knee was, but the word ankle was also missing for her again.

*gut punch*

Silly simple words.  Word I know will come back.  Words I know we can easily correct and reteach her if we need to.

But, oh those words.

Their absence says so much.

Please Send Comfort Food

I’m one of those people who can cry at the drop at the hat, sometimes.  If I’m frustrated?  Waterworks.  Angry?  Yup, I’ll tear up.  Watch that commercial on TV with the cute kid?  Well, you get the idea.

I’m having one of those overly emotional days, today.

Vista had a bad seizure last night.  It took her a long time to come out of it, which is very unusual for her.  Usually her seizures are short, and she’s fine right after them.

This one lasted longer and when we were finally able to wake her up after it, she couldn’t tell us her name.  She fell back asleep, which meant we had to continue to try to wake her up every little bit, trying to bring her out of the post seizure and make sure her cognitive functions returned.

Let me tell you… when you can’t wake up your kid, it’s scary.  V’s notoriously hard to wake up at the best of times.  But this?  This was different.  This was holding a ragdoll in my arms.  And just when we thought she might open her eyes she was gone again.

When we finally started to get some response out of her and I was coaxing her to open her eyes, she told me she couldn’t.  She was trying, but her eyes wouldn’t open.  Gah!

It took almost an hour for her to fully return.  That is a loooong 60 minutes of debating whether to bring her into to the ER, chatting with an on-call nurse, and repeating “Vista, sweetie…wake up and open your eyes for Mama” over and over.

This kid is seriously going to give me a heart attack.

She’s better this morning.  A little off on her balance, but otherwise seems to be alright.

I’ll be calling her neurologist on Monday morning to see if they want to do some level checks for her meds, since she’s had a couple growth spurts over the past could months.

But the fact that this seizure was so different than her normal ones… doesn’t sit well with me.

It makes me nervous that they’ll want to talk brain surgery again.  Which REALLY doesn’t sit well with me.

 

So while I’ve been doing the classic ‘worry about things you have no control over’ this morning I realize… wait… where the hell’s my cat?

I haven’t seen him since yesterday.

He always comes home.  Several times a day.  To eat, and get pets, and shed all over my floors.

But, no sign of him.

I couldn’t be Bil’s annoying useless cat that goes missing.  Noooo…it has to be my cat who I love and adore.

*sigh*

 

So I quit this weekend.  And in lieu of crying I’m eating ice cream, and carbs, and other random junk.  Please send wine and margaritas to wash it all down.

 

 

There is no Mommy…Only Zuul

Vista tends to be a tad… emotional sometimes.  I have no idea where she gets it from.  Really.  *cough* shut up *cough*

Add that to her penchant for taking things very literally and it can make for some… oh… say, interesting situations around here.

This evening was a perfect example.

We had been butting heads all day, so when Bil came home from work I quickly tagged out of the ring and took a breather.

But she wanted mommy, Mommy, MOMMMMMMMMY!

Bil tried his best to distract her and find out what she wanted, but nope.  MOOOOOOOMMMMY.

I finally looked at her and replied “The mommy you have dialed is no longer in service. Please hang up and check with your father again.”

Did I mention my daughter is also stubborn?  Again.  No idea where that comes from.  (shut it)

She gave a big huff.  “But Moooooooom….”

I looked at her with a smile “There is no Mommy.  Only Zuul

Instant.  HYSTERICS.

She ran sobbing to her room.  I raised an eyebrow and looked at Bil.  He shrugged and followed after her.

I could hear him trying to decipher the source of the waterworks.

Vista:  “I waaaaant mommy!”  *sob* *hiccup* *sob*

Bil: “OK.  Well, she’s in the living room”

Vista: “No.  That person said there is no mommy.  Only Zuul.  I don’t WANT Zuul.  I WANT MOMMY!!”  *more wailing*

Bil: “What person?”

Vista: “That person in the living room.  They said there’s no mommy”

Bil: “Wait… you’re talking about Mommy?  What Mommy said?”

Vista: “But there is no Mommy…..”

By this point I had to step in and intervene.  I crawled onto her bed and picked her up and explained that yes, Mommy was here and we were just joking and there was no more Zuul, and so on.  ZOMG… the DRAMA.

Half an hour later we finally got her calmed down enough that she would go play.

Me: “OK, lets go play before Mommy breaks your bed by sitting on it”

Vista: “Mommy’s going to break my bed?!?  Waaaaaahhhhhhhhhhh”

Me: *headdesk* *headdesk* *headdesk*

Bil: *glare*

I’m pretty sure I’m banned from saying anything for the rest of the night.

 

 

My Mom Wants To Be A Vampire

Friday morning I packed up Vista, made the hour drive into the city, and we went to the zoo with my mom and nephew.

It was nice to spend the day just hanging out, seeing the few animals that could weather the heat, and watching the kids play.

I always find it interesting to watch the dynamic between my nephew, Sheldon, and Vista.  He’s a year younger, but physically more coordinated and stronger than V is.  While she is far beyond him in the language and communication area.

As they made their way together through the playground, they were always watchful of each other, making sure they knew where the other was at all times.  Sheldon would show V how to navigate the playground equipment as they talked back and forth in their own made-up sign language.

As they ran around playing, I had to constantly remind Vista to slow down so her asthma wouldn’t kick in.  Of course, that means nothing to a 4yr old, so eventually we had to sideline her as she sat there and did a round of inhalers to stop the coughing.  I’m hopeful that one day we’ll have her asthma under control enough that I won’t ever have to tell her to stop playing.

Afterwards we headed back to Mom’s and sat chatting in the shade on the deck while kids ran around the yard (where do they get the energy??).

“I’m thinking of changing my hair style when I go to get my hair cut tomorrow,” my mom mentioned as we sat sipping our coffee.

Me: “Oh?  What are you thinking of doing?”.

Mom: “I want something wispy… you know…,”  as she feathered out the back of her hair.

Me: “What?  Like Farrah Fawcett wispy?”

Mom: “No, no… just something that sort of flips out at the ends…”

 

I immediately had a idea of what she was describing.  I pulled out my phone, browsed and pulled up a picture to show her.

 

Me: “You mean like this?” showing mom the phone.

Mom: “Yes!  Like that.  Maybe not that it sticks out quite as much, but that’s the general idea.”

I doubled over in laughter.

Mom: “What’s so funny??”

Me: “You do know who that picture was that I showed you, don’t you?”

Mom: “No……..”

Me: “Well, just tell your hairdresser that you want to look like Alice Cullen from the Twilight series and you’ll be fine.”

 

Yup.  My mom wants her hair like this:

alicecullen 241x300 My Mom Wants To Be A Vampire

So there’s only two real questions…

1) Is she Team Edward or Team Jacob… and..

2) When is she going to start sparkling?

It Started With A Simple Stencil

I’ve been wanting to repaint Vista’s room since before she was born.

In fact, I had this whole beautiful nursery planned out.  But V had other plans with her early arrival.

And so her room went unpainted.

Instead I stuck up some Winnie-the-Pooh decals and, later, Disney Princess decals.  But anything within her reach was quickly pulled down.  So, her room was a very stark and drab, with it’s beige walls and white furniture.  And it’s been like that for 4 long years.

I finally decided I was sick of looking at it and made up my mind that this summer we were giving her room a paint job.  It was way past time she had a room fit for a little girl.

So, I did what any geek would do.  I scoured the internet looking for ideas.

The only thing I knew was that decals were out, as far as decorating went.  Other than that, I was at a complete loss as to what to do with her room.

After months (yes.  really.  months) of looking, I finally settled on a design of pale green walls with pink and white accents.

But, once again, V had other plans.

I was looking at a wall stencil site one evening when Vista crawled onto my lap.

She immediately pointed to a picture.  “That.  I want my room to look like that.”

I brought up some other pictures for her to look at, but she wasn’t budging.  She wanted fairies on her wall and the walls better be pink… or else.

So I did what any parent would do.  Caved and bought the stencil package  (never mind the fact I’ve never stenciled anything in my life).

And things just went downhill from there…

This is what the room looked like before we started (well, we had gotten as far as clearing stuff out of her room, removing the horrid shelving units from her closet and wall cubby and patching holes before we had an ‘Oh crap…we need before pics!’ moment)

 


before1 It Started With A Simple Stencil

Her armoire (complete with tacky Disney Princess decal) and bed.  Her bed was one of those crib- to -daybed-to-full bed deals.  I love her bed.  She, of course, hates it.

 

 

before2 It Started With A Simple Stencil

Her massive dresser and the weird in-the-wall cubby hole.  The cubby in the far corner originally had a wire shelving unit in it. It came that way when I bought the place and I just never bothered to remove it, despite my intense loathing for the thing.  I figured since we were pulling it out to paint, it could stay out.

 

 

before3 It Started With A Simple Stencil

The closet also had a horrid wire frame shelving unit in it.  Buh-bye.

Vista’s room is fairly small, with several large pieces of furniture.  Too many large pieces.  One of them had to go.  Which kinda made me sad because I really like her furniture.

We made the decision to take the armoir out and got it as far as the living room before realizing that the thing weighed a billion pounds and there was no way we were going to be able to carry it downstairs to the spare bedroom as we had originally planned. We *might* have had an ‘Oh shit’ moment before Bil came up with the genius idea to put it in our kitchen as an extra storage pantry.  Since our appliances are all white, it fits in nicely.  And also makes me want to redo all the kitchen cabinets so that they’re white too.  And maybe refinish the kitchen table.  It’s funny how projects snowball, isn’t it?

Well, Vista’s room was no exception.  It started with a simple stencil kit.  It ended up being a total room makeover.

After pulling the armoire out, we decided it was probably time to get Vista a full sized mattress.  She’s been complaining that her bed it too small for a while.  She’s also been begging me to paint her bed pink.  I really, really, don’t want to do that. Really.  Like I would cry if I had to.  So instead we headed to Ikea to look at new (cheap) beds.  Because we’re giant suckers and our daughter is spoiled.  Oh, like you wouldn’t do the same.

We wandered around the kids bedding section at Ikea for an hour.  The single beds were ugly.  The full size beds would be to big for her room.  Well…this wasn’t working out how we had planned.

We saw a loft bed that we thought might work, but the reality is we would have to make huge modifications to it in order to make it safe for V to go up and down right now.  That sounded like work.  And effort.  Neither of which I’m terribly fond of.  But, wait! We found out that same bed can be flipped upside down!  Twin bed today, loft bed if she ever get’s coordinated enough to handle it.  Those crazy Swedes.

So we had our new bed.  And then we decided, oh what the heck… lets find a shelving unit to go in the closet while we’re here.

And of course a new bed means new sheets and comforter.

Oh, and then we saw this adorable light fixture that was just PERFECT!

(You see where I’m going with this…right?)

Yeah.

That $80 stencil kit turned into a $1500 complete room reno.

Which we are going to invoice her for on her 18th birthday.  Plus the cost of labor, because ZOMG it was a lot of work.

So….

*drumroll*

This is how the room turned out (and it’s still a work in progress).

 

 

after1 It Started With A Simple Stencil

The new bed.  I hate the canopy on it.  I wanted to do some pretty pink drapes or something more feminine.  V and Bil love the ‘tent’.  I totally got out voted.

The walls look like a pale pink in this picture…they’re actually quite a bright pink.  I had a bit of buyers remorse on the paint once we got the second coat on, because, ZOMG, it’s a lot of pink.

On the to-do list is to paint the wooden bed frame in either a dark pink or white (what say you, my readers?).  I just ran out of time this weekend.

 

 

after2a It Started With A Simple Stencil

The ugly cubby was painted a darker pink and turned into a little reading nook.  I still need to find and put up some little book shelves on the far wall of it.

We ended up, with taking the armoire out and the new furniture arrangement, being able to put V’s toy kitchen in her room.  And she still has more floor space then she had previously.  Bonus.

 

 

after2 It Started With A Simple Stencil

A close up view of the cubby and the wall stencil.  V was totally head over heals in love with this mushroom stencil.  I’m pretty sure that means she’ll be a drug addict when she’s older.

 

 

after3 It Started With A Simple Stencil

Rather than a shelving system, typical of closets, we opted for a wooden bookcase type unit.  I like how it recesses into the closet, but still has plenty of storage space.

 

 

after4 It Started With A Simple StencilThe stencil as you walk into the room.  I have to say I’m really happy with the look of the stencils.  They can be a bit of a pain to place on the wall properly, then time consuming to paint (especially if you want to layer them).  But the final results are amazing and totally worth the effort.

I only had time to get a couple stencils on the wall, but I will be adding more in the weeks to come.

Overall, I’m happy with how things turned out (I could have done without the attached price tag, though, but hey).

Now… to do something about those kitchen cabinets…

 

 

Staying Away

I’ve been avoiding my blog.  Yes I admit it.  I have.

The past few months have once again been filled with doctors appointments and med changes for V.  And I’ve just found I’ve become tired of writing about it.  But it tends to consume our lives, so it leaves so little else to write about.

I’m struggling to find a way of updating friends and family and documenting our journey with Vista, without turning my blog into a whiny, pity party.   Because, really, in the grand scheme of things, our life is so good.  Vista is, generally, healthy and happy.

*************

This past weekend my parents took Vista to stay with them so we could redo her room (more on that tomorrow).  This is the first time she’s ever stayed with them (or anyone) for an extended period of time.

Apparently, it was an enlightening experience for them.

As much as my parents know what our life is like, and see what it’s like to parent a special needs child, they didn’t really fully comprehend our day-to-day world until they lived it for 48hrs.

Two full days where they were responsible for all her meds and dietary concerns.

Two days of managing a little girl who likes to go to bed late and wake up at ungodly hours of the morning.

Two days of dealing with her Jekyll and Hyde moods.   (which my father will swear is just karma for my teenage years)

Two days of watching for signs of seizures, asthma, and heat stroke.

Two days of living our lives.

And they walked away with a new appreciation of how different it is parenting a child like Vista.

***************

I can tell you, here in this space, what our lives are like.  And you will walk away understanding in the same way my parents understood before this weekend.

There are nuances that just cannot be conveyed.

Which leaves me in the struggle of how much to share before it becomes boring, monotonous, and repetitive.

I’m trying to figure out where the line between sharing and over sharing hides itself.

But in the mean time silence is more comforting than writing about the medical journey that comes with being Vista’s parents.

Girls with Guitars

Sunday morning

Guitar

Tutu fashionista

Rock on little girl

Vguitar 468x750 Girls with Guitars

Putting the Kid To Bed…It’s a game the whole family can play. Even the cat.

Around here, putting Vista to bed is a team effort.

You say the world b.e.d and there’s immediate waterworks and wailing and gnashing of teeth.  And Vista gets pretty upset too.

She has a distinct aversion to the thought of going to bed.  Doesn’t matter how much we stick to routine, how much warning we give (or don’t give)… there’s always tears involved.

And lately she’s started insisting that Daddy come and lay down in her room while see falls asleep (because she knows that Daddy is a big sucker who’s wrapped around her little finger and there’s no way Mama’s playing that game).

But lately we’ve discovered a secret weapon.

Our gigantic ball of fur, known as Xander.

Xander gets mad props for not having clawed Vista’s face off (yet).

He’s tolerates her so-called petting.  He tolerates her hugs (which involve her laying across him and using him as a pillow).  He even tolerates her trying to pick him up and put him in the microwave (charming child of mine).

Xander was a SPCA rescue that we picked up.  We had no idea, really, what we were getting.

What we did get was a giant suck, a proficient mouser (judging by the number of decapitated mice he leaves around the yard *gag*), a peace keeper (remind me to tell you the story about the time he broke up a dog fight), and so much more.  But from the moment we brought V home, he was her cat.

And these days he’s our bedtime saviour.

As soon as the cat hears V start demanding that Bil sleep with her, he runs into her room, jumps on her bed, and curls up at her feet.  At that point Bil becomes persona non grata.  She settles right down, no more arguments, no more whining.

The other night she woke up at 1am crying.  I went in to try and calm her and find out what was wrong.  She wasn’t having any of it.  But eventually Xander heard her, woke up, and came took up his spot on her feet. She immediately told me to get out (no, not even kidding) and went back to sleep.

He usually doesn’t stay long in her room.  Just long enough to see her settled. Then he comes back out and takes up his normal spot in the living room.

I’ve never met an animal as perceptive as he is.

But he was definitely meant to be part of this family.

Mojo

I’ve been struggling with the whole blogging mojo lately.

Photo 819C40FB 17C6 C50A 0ACC 45ECCCB69233 225x300 Mojo

I come up with these amazing post ideas while I’m out and about with Vista and all her activities.  But, by the time I sit down in the evening to write, they’re gone.  My mind is like a sieve, lately.

So when I ordered V a bunch of tees from the new Pigtail Pals line (OMG, cute!!), I also ordered myself a couple of their notebooks.

I figured with a cute little girly pic on it, Bil’s less likely to abscond with it for his geek notes.

Now when I’m out and have a flash of brilliance I can write it down for later…hopefully…if I remember.

So be prepared to be dazzled by my blogging brilliance again, soon.  Or something like that.

 

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