Thursday, July 31, 2014

In All Honesty... In The Raw...

I want to be writing about my jam packed weekend, going to Ren Faire and the family picnic and then another blog about my beach day with my kids, but there's some other things I wanted to get off of my chest.

I've been struggling.  For a long time.  I've spent a lot of time trying to figure out who I really am and what I should be doing.  Since I was little.  When you're a kid, adults tell you that you can be anything you want.  Your parents tell you, your teachers tell you... the supermarket clerk probably told you.  I just wish it was actually true.  You see, I envisioned myself as a lot of different things.  I wanted to be a movie producer.  I wanted to be a model.  I joined the choir in high school because I thought maybe I'd learn how to have this incredible voice and I could be a famous singer someday (yea, don't listen to me sing... it's not pretty...).  When I became a little wiser, I thought a career as an accountant would be great.  I took the classes in high school and I was good at it.

None of those things panned out.  Once out of high school, I started working right away.  I had a little baby boy to support and making sure I could provide for him was the most important thing to me.  I had some really great jobs along the way.  Jobs that gave me great experience and were great stepping stones.  One of which introduced me to the man I'm married to, and with out him, I wouldn't have the awesomely big family I have today.  Around 2005 I exited the work force.  I did have a few jobs here and there and in between when we had rough spots but today, I am a stay at home mom.  It's a hard job.  Probably the hardest of anything I've ever done.  Nothing close to what I ever imagined.

Which is all just part of the difficult recipe I've had to follow through out my entire life.  Nothing has been easy.  I tell my husband all the time that from the time I was a little kid, as far back as I can remember, I've had to struggle.  Luckily for me, I was built tough.  I was built to figure things out and deal with things as they came.  That's why I can be who I am today.  I was built this way.

I just wish I could get a break.  When Mallory came along, everything got turned upside down.  Everything I thought I knew was complete nonsense.  What I thought was strong, wasn't even close.  My reality isn't the same as most others' realities.  After I had breakfast this morning, I had resigned myself to the fact that this wasn't going to be a shower day for me.  I went into my bedroom, put on a new pair of underwear, jeans and shirt, threw my hair up and called myself "ready for the day".  I look like crap (with my apparently ginormous claw).

I looked at myself in the mirror and wondered if other stay at home moms look like me today.  I looked at myself in the mirror and wondered why I couldn't be "that mom".  You know, the ones who have the greatest selfies.  All done up every day, great hair... probably gets to go the salon, great outfits and perfect little well dressed kids with the perfect craft activities for the day and the perfect neighbors who have perfect outings and perfect poolside wine parties.  Why can't I be her?

Then I realized that it's because it's friggin' impossible to be her.  You know what's first on my daily checklist?  Doing my daughter's trach cares.  Then I have to get her breakfast ready.  Then I have to supervise my other kids' breakfast.  Then I have to get my three year old changed and ready and then make sure his hearing aids are in.  By that time it's like an hour until lunch.  Where does my day go?  And this is an easy day... I mean, school days are even more packed with panic.  I don't have time for the perfect make up or hair or outfit.  Or working out so I can have the perfect physique.  I've packed on about 15 extra pounds in the last 6 months.

Then I worry about where I really fit in.  Where my daughter fits in.  Facebook is a demon on some days.  I watch other families with little kids with disabilities doing some really great things.  I watch as there are whole groups and organizations that work with kids with Apert Sydrome.  I want to jump on the bandwagon and be all up in that, but then I stop myself and say, "my daughter wasn't diagnosed with Apert Syndrome... she was diagnosed with Pfeiffer Syndrome".  So where does she fit?  Somedays she feels less important.  There isn't a whole lot of support out there for Pfeiffer Syndrome.  There just isn't.  Should I start that bandwagon?  Do I have the time?  Do I have the energy and resources?  I don't really know.  I don't know.  I know that I love my daughter.  I know my husband loves her and her brothers are HUGE fans of her.  Maybe that's what I should focus on and stop worrying about changing the world for now.

My other problem is guilt.  I have to pick and choose the things I can do with my boys and with her.  That often means letting people down.  I always feel guilty about the choices I have to make.  Apparently, though, it means sending the message that I just want to be alone and secluded too.  I don't know if anyone really intends to make me feel like that's what I ultimately want but I don't think anyone really understands what it's like to be in my shoes.  The intricate planning that goes into every choice I make anymore.  The anxiety that comes with it.  The feeling that I have to disappoint people around me.  It's a burden that I now have to bear.  Another layer of strength to keep moving every day.

And do you want to know what really pisses me off?  People that take advantage of the good.  People that have the opportunity to do great things with their lives but choose not too.  They choose the wrong people.  The wrong directions.  That blame others instead of looking inward.  That try to replace bad things in their lives with other things and think it's supposed to make anything better.  That start to have it good and then try to sabotage themselves.  People that take their kids for granted.  Who don't see their kids as gifts.  It actually makes me feel sick to my stomach.  And I know more people than I'd like to that just pass off their responsibilities or stresses onto others.

So what's the point of all of this?  I don't really know.  Maybe just to vent.  I really like my blog to have a more sarcastic and humorous vibe, but sometimes I can't help but feel more raw about life.  Every day I wake up and wonder if my daughter will live to be a teenager.  I have nightmares about it.  I've seen other people have to live that nightmare.  That fear that has been placed upon me because of Mallory now trickles to my other kids.  I constantly wonder if there is something worse wrong with them.  What if I lost one of them?  What if I lose her?  What if I lose my husband?

I do my best not to live in fear and just live.... but somedays I wonder how.  I'm a stay at home mom.  I get up every day, look in the mirror and say "this is as good as it's gonna get".  My dreams are on hold.  My inspiration seems gone.  My motivation... forget it.  I worry about hospital visits.  Making doctor appointments.  Scheduling surgeries.  Getting my medical equipment orders in on time.  Bills.  Will we run out of money?  How do I keep the boys from feeling the stress?  Etc, etc, etc.  It doesn't seem right.  How do I balance my fears, my family and my hopes and dreams?

All I can do is go to bed tonight and dream about the day when maybe I can help my daughter change the world, while I'm taking life changing photos and running a grilled cheese restaurant.

Wednesday, July 23, 2014

Drip, Drip, Splash!

I'm sure much like every other parent, I've been trying like hell to get my kids out of this house this summer.  Or at least working hard to keep them off the video games.  Damn those video games.  Day in and day out, that's all they want to do!

I fight them tooth and nail.  Tell them they should find something else.  Sometimes they win the fight.  I'm at least smart when I let them win though, like getting a newly cleaned bathroom or a mopped floor out of it.  Plus, the more time spent on chores, the less time behind the zombie creator.

Every so often I win the battle and get them doing something else.  They come up with cool stuff too.  They spent like three days straight last week sleeping in forts that they didn't want to take down because they worked too hard to build them.  After they saw the Lego Movie for the first time they spent days building really awesome things (with out directions).  Today was no different and fun to watch as well.

After lunch time the sharks started circling.  It's a daily occurrence.  I think they must draw straws to find out who will be the one to speak to me first.  "Mom?", says one of them... in all honesty, I have no clue which one it was.  I was preoccupied trying to feed Mallory.  My immediate response was, "No."

The shoulders always fall and the smiles turn to frowns, and then I utter their favorite words, "go find something else to do.".  "Okay, Mom."  I tell them that it's nice outside and they should do something outdoors.

Jeremiah, Andrew, Nicholas and Quentin get all geared up and head outside.  They run around for a bit, swing on the swings... normal outdoors stuff.  Then, Andrew peeks his head inside and asks me if there is any water stuff to do.  He even insisted that I run to the dollar store to get balloons for them to fill with water (which I have in fact inserted in the back of my head to try on another day).  I told them if they could locate the sprinkler in the garage, that they would be more than welcome to partake in that action.

Took minutes.  Literally.  They all run in the house looking for swim trunks, completely psyched about their discovery.  Minutes after that, the fun was beginning.

Then, they came up with a game.  The title of this blog.  Drip, drip, splash.  What was amazing was actually watching Quentin follow along with what his brothers were doing and having a blast right along with them.

What is drip, drip, splash?  It's kind of like duck, duck, goose... but with water.  One would be in charge of filling a bucket with water while the others gathered (and apparently squatted) and waited to be "dripped".

Instead of the "goose" part, the "splash" would be getting an entire bucket of water dumped on your head.  I was a little surprised that they targeted Quentin so quickly!  I watched as he was looking around and smiling, getting "dripped" and waiting to see what would happen next.

Then, it came.  The "splash".  Poor Quentin, never saw it coming.

Afterwards, he knew it was his time for revenge.  His big brothers got the water ready as Quentin brought the bucket.

I saw the look in his eyes.  Mean.  Ready.  Determined to get back at his brothers for what they had done.

He brought the bucket over.  He decided only a few "drip, drip, drips" would be necessary.  Then it was onto the "splash".  He chose Nicholas as his victim.... and dumped the bucket...

... All. Over. Himself.

He missed his target and the water landed on himself.  But he was proud.  He laughed and pointed.  It was wonderful.  I especially loved when Quentin leaned over Nicholas with the bucket and put the last few drops on him.  So awesome.

That is truly what it's all about.  Fun.  These kids had a blast playing a game that they created themselves.  I'm glad I was able to get them outside and they could make memories and laugh together.

Well, at least until Jeremiah got "splashed".  Then it ended like this.

Haha, just kidding.  He was playing up for the camera!

So here's the public service announcement for today... get those kiddos outside.  Don't give in to the video game begging.  Get them thinking and being creative!!  And if you do give in to the video game begging... take a page from my book, get a clean floor out of it!  Hehe... :D

Monday, July 7, 2014

I Watched You Being Borned....

Hehe... borned.. that makes the word 'born' even cooler.

Oh Anthony.  My adorable nephew Anthony.  What can I say?  Turning 2... it's a big deal!  

I remember the day he was born.  The very early o'clock text message that said my sister was in labor and I needed to get my A-S-S to the hospital.  I jumped in the shower super quick and arrived at the hospital probably around 5:30am (ish).  

I watched my sister go through some pretty intense labor and problems with her epidural.  Not to mention an emotional roller coaster.  I passed on updates to those waiting in the gallery.  Her supporters, friends and family.  They could see her window from the waiting room (haha).

I'm so grateful that I got to be there for everything and watch this little man being born!  It's an experience that I'll never forget! It is an unforgettable experience going through the births of your own children but being on the other side, witnessing it with out being the one doing all the work is in some ways even more unforgettable!  I was such a proud Auntie on that wonderful day two years ago! 

Anthony had lots and lots of visitors.  Such a lucky little guy!

I came equipped with my camera, so I took lots of photos!!!  

Since then, I've watched my sister and her son... her rock... overcome so much.  I've watched this little guy grow up and turn into the little man he is.  He's so cute and funny.  He's goofy with an awesome sense of humor.  He's picky and friendly.  He's gone from shy to talkative.  He's just a great kid!

(Here's about a ton more pics of Anthony getting growed up!)

When you've got a great kid you know there's a great Momma there too!

Don't worry, Chrissy, two isn't that bad.  It's a great age actually.  He's going to go from that baby/toddler phase into a real, actual, little person.  Opinions.  Likes.  Demands.  More than ever before.  However, make sure to have a good time out corner!  He'll test you like crazy for the next two years!  

Make sure to let him experience new things and teach him everything you know.  Make each other laugh every day! Watch lots of movies and have living room sleep overs.  Go for walks.  Play on the beach.  Do it all!  

You're doing a great job, Momma!  The smile on this kiddo's face says it all!

And Anthony... your Auntie Caffy loves you bunches!  I hope you have the best 2nd birthday ever and I'm so happy we got to come down and have some birthday cake and celebrate with you!

Oh... and I'm sorry your mean ole' Mom had to put you down for a nap before we left!  (Totally kidding, Chrissy... you know I would have done the same!!)  

Happy, happy, happy, happy 2nd birthday to my amazingly awesome nephew, Anthony!  May all his wishes come true!