Tuesday, July 26, 2011

A Day in the Life

We woke up early on Sunday morning.  And I mean EARLY.  Aubrey decided to wake up around 5 am and sit on the chair by my bed and STARE at me.  I finally cracked an eyelid and said...please go and play in your room or go lay back down at least until the sun comes up...And so she did but she was back at about 5:40.  Right when the sun came up.

Uggg.

So I got up and as soon as my feet hit the floor, Hailey was up too jumping and clapping like it was the most exciting thing to be up before 6 am on a weekend!  Now keep in mind that if we had somewhere to go, they both will sleep until I literally drag them out of bed.  If there is nowhere to go and no reason to be up, they will wake up at the crack of dawn...go figure!!

To the potty for both of them and then downstairs we went for an extra large cup of coffee for me and scrambled eggs, bacon and toast for them.  It would be a good thing to note here that hubby is of course snoozing away still at this point...No reason for us both to be up!  Unload the dishes from the night before while the girls are eating breakfast and clean up the living room...At least it is after 6 am by this point!

Then fold a load of laundry and do some ironing while the girls watch some cartoons...Thank you 7:15 am!

At about that time, hubby comes down the stairs and the girls head outside with him to feed the dogs.  I clean up the kitchen and make him a plate for breakfast and some coffee.

A shower for me, makeup and hair done while the girls stand outside the shower door and bang on it saying MOM, she won't stop touching me (well Hailey is just laughing but you get the point!)...then get the girls dressed, clip their fingernails, brush their hair and do their favorite variations of ponytails and braids.  Make the beds.  Wow, it is 9 am now.  Then we decided that it would be fun to make it down to Old Sac (since we were up so early anyways!) and get some lunch and walk around.  So by the time we give meds to Hailey, she needs a snack.  So I feed the girls both a snack and Hailey throws up because she hears a dog bark while she is eating and it startles her.  One of her hearing aides is broken and not having it has been making her startle and jump at little noises.  So, change the little Hailey's clothes, brush her teeth, clean her up and the kitchen up and off we go.

Oops wait, everyone under 12 needs to go to the bathroom before we get in the car.

We get down to Old Sac and eat lunch at a great little Mexican Food restaurant that is on the second floor.  Hailey really wanted her wheelchair but I didn't want to have to go all the way down the block to use the elevator so I said no...which sent her into a complete fit where she screamed and I literally had to drag her up the stairs to the restaurant.  I distracted her with the menu and we finally got our food ordered.  About half way in the meal, the girls need to go the restroom...So of course, off we go.  (only half of a margarita for me by this time~you will read in a minute why I didn't even get to finish it).

Wow, is it even noon yet?

In the bathroom, a motorcycle went by and startled Hailey which caused her to what...oh yah, PUKE AGAIN...all of the bathroom in the restaurant...But it's fine, this is nothing new to me.  I've been puked on and around for 10 years now and to tell you the truth, it really doesn't faze me.  So I send Aubrey out of the bathroom to get the waitress who then comes in and I say, I can clean it up if you get me a mop and some towels (I have definitely cleaned it up before!!)...but she kindly says that she will take care of it (I should send her a thank you note)...so I clean Hailey up, change her skirt into the spare clothes that I keep in my purse for her, wash every one's hands thoroughly and off we go.

We walk around Old Sac for an hour or so after we get the wheelchair and stroller out of the car for the girls.  We can't go into any stores because I know that at this point Hailey will have a ball pulling all of the racks over...that is just the type of mood she is in today so we just walk and enjoy the sunshine and the people walking by...

But ut oh...there is a dog so I swiftly swirl Hailey's wheelchair around and walk her backwards so that she doesn't see the dog (a sure fire way to get her to puke again if she sees a dog that she doesn't know on the street).

After an hour of walking around we load back up and get into the car to go home.  It is about 1:30 by then and the girls need a nap...which is really code for me making them rest while they both wriggle and Aubrey screams "can I get up yet" every 2 minutes for a half hour.

Then they want to swim so I change them into their suits and me into mine, sunscreen them both, put them both in their life jackets and out back to the pool.

Where they immediately start fighting over the pitcher that they like to fill up with chlorine water to water hubby's vegetable garden (shhhh...don't tell him!)...So I find another pitcher and so they each get to water with the chlorine water...Some form of splashing and swimming goes on.

It's about 5 when after breaking up about 25 different battles about the pitchers and the floaties and the rafts that I finally get them both out of the pool and into their clothes then we sit down for dinner which (thank god) hubby has taken care of cooking today (Hailey has an accident in between all of this, I can't forget that).

At dinner, my son and I get into a discussion about whether he can go to the skate park or not and why he can't go and why he can't do this or that and finally he picks a fight with me.  I have a feeling that he is trying to make it so that he doesn't ever have to come home if he makes dinner miserable (fat chance oh son of mine...dinner is a family affair...so there!!)

So then it is clean up dinner and off to shower time for the girls.  So I get them all showered and washed and smelling clean and fresh and Hailey throws up again...uggg.  Will this day just end already????

After 45 of the longest stories in the world, I finally tuck them both in and basically fall onto the couch.  Hubby hands me an extra large glass of wine and I basically pass out right there with it in my hand....Goodnight.  5 am comes awful early after a day like this!!

It is funny how my life has changed from the beautiful fairy tale that I thought it would be to days like this strung together one by one day after day...But I wouldn't change it for the world (well maybe I'd change the 5 am part and I could do without the puking after all!).

Sunday, July 17, 2011

Don't Forget the 4 Year Old!

Sometimes in this crazy life we get caught up in the day to day things...The therapies, the doctor visits, the IEPs, the meetings, the IHSS appointments, Medi Cal, SSI, all of the acronyms that we have for our children with multiple disabilities and different medical labels.

Sometimes we just need to put one foot in front of the other and get to the next day.  Get through the next crisis, get everyone in bed at night so we can fall in bed ourselves and start over in the morning (or at 3 am depending on what the night actually ends up like).

But there are sometimes that we need to step back and look around and realize that sometimes we are forgetting the littler people in our lives.  The smaller ones...the four year olds. 

No we aren't forgetting to love them or feed them or care for them or read to them or laugh with them or bathe them...Nothing like that.

We are forgetting that there are things that they don't get to experience because you just don't have enough time between all of the one foot in front of the other days.

So this weekend we didn't forget...We took a look and we saw...

We saw that she never gets to go to her friends houses and play like a big girl while all of the adults barbecue...and so we went to her friend Brianne's and had a barbecue.  And she had a blast.  And so did we!

We saw that she never gets to go to a movie and to lunch and not have her older sister pulling her hair or squeezing her arm or taking all of the attention...and so we saw the Winnie the Pooh movie and she got to bring her Winnie the Pooh doll and choose Applebees for lunch and get all of the attention!

We saw that she never gets to play dress up without her sister taking all of the favorite dresses and shoes and hats and purses and beads...and so we dressed up in her favorite dresses and she played Cinderella and Belle and princesses!


 


We saw that she never gets to do special things with her hair because her sister doesn't have long hair and gets jealous if she gets curls...and so we rolled her hair in curlers overnight and woke up with beautiful Shirley Temple hair!

This weekend we saw all of the things that she misses because her sister has so many needs...

And driving this morning she said, Mommy this is such a great weekend but I wish sissy was here!

Maybe she isn't missing anything at all.

Saturday, July 16, 2011

Missing the conference...again

Once a year the 5 p minus society (the support group for families with cri du chat) has a conference. 

The first conference that I went to, I have to admit...I was not ready for.  I was not ready to see children with Hailey's diagnosis who were older.  I was not ready to see the children who were ten and still not speaking, some not walking.  I was not ready to see or meet the 20 year olds who were still not speaking, some not walking.  I just wasn't ready.  I cried through the entire weekend.  It was in Utah and we flew from California.  Hailey was just a baby, not even a year yet.  She didn't sleep back then and cried the whole weekend because she wanted her bed...or maybe she cried the whole weekend because I was crying the whole weekend...I'm still not sure. 

The point is...I WAS NOT READY.  So I really got nothing out of it.  I wasn't ready to embrace the new life that was facing me.  I wasn't ready to deal with the emotions that went into it.  Hailey still just looked like a beautiful porcelain doll.  She was too little for anyone to realize that she had a disorder at all.  So I wasn't ready to meet the people who would know just by listening to her cry.  I feel ashamed about that sometimes.  That I didn't give anyone the chance to support me there.  I didn't open up during that weekend to anyone who might have been able to help me.  But I just wasn't ready.

In 2008, we tried it again.  We travelled to Virginia with all three of the children.  Zach was 12, Hailey was 7 and Aubrey was a year.  It was wonderful.  We had an amazing time. We met amazing people.  We loved it.  We swore we'd go every year.

And then the financial crisis and events of 2008 happened.  We lost our home and our savings and our business.  And the conference was a pipe dream.

The 2011 conference is coming up in 2 weeks and we are missing it.  It is still just too expensive and just out of our reach to afford to travel with our family that far.

And I am bummed.  I have met so many wonderful friends through facebook and all of the blogs that the other families have written.  I finally feel connected to other families who are facing the same things as we are...and I want to meet them in person.

So my goal over the next year is to come up with a solid plan on how to get my family to that conference!  A place where people don't stare and we are just accepted as we are.  Where Zach doesn't have to explain or defend his sister and Aubrey doesn't have to tell teenagers to stop staring at her sister.  Where Tim and I can meet other moms and dads who share our feelings and fears and struggles.

Next year...I can wait right?

Monday, June 27, 2011

So I bought an mini van...

So back in November I bought a mini van.  I was so excited.  We had talked about and even picked out a truck but a mini van seemed so...ROOMY!!  With TVs for the kiddos and everything!  So out with the huge gas guzzling Suburban and in with the great on gas mommy mobile...the Town & Country!  And I love it.  Yes, I get teased by my friends on occasion and my 15 year old probably doesn't think it's the coolest thing but the girls LOVE it too!!  The doors open with a touch of a button and the bonus is that Hailey doesn't need so much help getting in and out as she did in the Suburban.

But we didn't really think about a couple of things. 

First of all, it can not, will not pull a boat...and I have a boat.  Bummer.  Never even thought about that problem since we don't use the boat in the winter and it was raining when we exchanged huge Suburban for little old mini van.  So this year, the little speed boat is retired.  We are giving her a rest from the camping and the weekend river trips and the lake hauls and everything.  No biggie...No boat.

Second of all, it can not, will not fit our camping gear in it.  Well technically it will.  But we look like the Griswolds and we have to take a second car to carry hubby, the two giant dogs and the two 15 year olds...oh and the firewood.  Oh and the second car has to have the bikes tied to the back of it.  And the girls and I pretty much have room for our legs (sort of) and we are squeezed in like sardines.  There are 4 giant bins of camping gear tied to the luggage rack. It is actually pretty ridiculous when you think about it!

I should have taken pictures but it is dark now and you just wouldn't get the full effect of the Griswold-ness that it represents!  I am going to post pictures when we get back but for now, you will just have to use your wonderful imaginations and laugh with me!

We did get it all in...barely...in the mini van and a second car.

I mean, I thought these mini van things were supposed to have the most room of any vehicle ever!  NOPE!!

I miss my Suburban...and my hubby's truck.

Hopefully when we are done with this camping thing, I can go back to loving my mini van!!

Saturday, June 25, 2011

Rollercoastering!!

Our family loves amusement parks. If we ever had enough money to take a serious vacation, we would rent an RV and go roller coastering across America!

For now though we will have to settle for short trips in California...Six Flags, Disneyland, Great America. And we all love it!  Six Flags Discovery Kingdom is only about an hour away from us.  We all have season passes and a parking pass and we use them as often as we can!

Yesterday we went to Strawberry Kingdom (yes, the name is actually Discovery Kingdom but the 4 year old has renamed it...we now all call it Strawberry Kingdom...we are not sure why!).  And it was, as usual...AMAZING!!

Everyone had the normal wonderful good time...lots of rides and laughing and running around.  A couple of shows & a look at the elephants (my personal favorite!).

This time, Hailey tried Medusa. For those of you that have never been there...it is a huge roller coaster. The biggest that they have...with lots of upside down flips and twists and turns.  She has never been on this one before but she wanted to try it.  So she was able to choose which adult was going to go with her...Mommy (yes, I am her favorite and have been known to say things like, "you don't have to fight over how wonderful I am" to the girls when they are battling for who I will ride with) or Bum (my hubby's name is Tim but she can't say her Ts so she has called him Bum for years!! ha ha ha...).

Of course she is going to choose me.  Of course!!...WRONG!  I think I actually gasped!

She chose Bum!

So I tried to put on a happy face (even though I was going to have to sit out the biggest roller coaster so I could stay with the 4 year old...who is still 8 inches too short to go on it)...and I watched her run off into the ride line (or exit since she gets to skip the line)...and then I stood under the ride watching her go up the giant incline in the huge seat with her little tiny feet sticking out...Oh my she looked so little.

And I was scared.  Normally I am sitting next to her so I feel a little more in control, even though I am not.  So when I waited for them to come out of the exit, I expected her to be all tears...So...

She comes running out of the exit, with her 15 year old brother on one side and his 15 year old buddy on the other side of her, holding their hands...LAUGHING!!  My hubby was trailing behind (apparently it is way uncool to hold the hand of your step dad or any adult for that matter at an amusement park) laughing himself.  So apparently she kept signing and saying more and was so excited and had the best time!

It was such a typical child moment for her that I am so glad that we are able to give her. With all of the challenges that she faces..all of the therapies and the stares and the frustration that she gets...Amusement parks are a place that she loves where it doesn't really matter that other kiddos stare at her or people ask about her disorder...It is a place where she could care less because her only goal is to get to the next rollercoaster, to the next ride, to the next show.  Her only goal is to laugh with her family.  It is one of the only places that having a disability like hers actually has an advantage...for her and for her siblings.  She never has to wait in line.

And that just gives her more time to go on more roller coasters and have more fun!!

Thursday, June 23, 2011

So afraid to fail

I have been so tired over the last few days and not at all in the mood to do much of anything.  I really just felt like I've been coming down with something but after talking with my hubby, I think it is something more.

I'm pretty sure that I am afraid to fail.

I have never really had that feeling in my life.  I normally just jump head first into most situations.  I don't over think things and I don't have difficulty making decisions...or at least I didn't.

While I was a part of the yacht chartering business with the villain (also known on my birth certificate as my father), I was confident, business savvy, and really really good at what I did.  I worked my butt off and enjoyed pretty much every minute of it.

Then everything fell apart when the villain decided that I didn't belong there anymore.

And I still held onto my confidence, for awhile.

I applied for high end jobs making a comparable salary.  I made it to the final interview for 3 very high profile positions.  It was between me and one other person....then they would hire the other person.  I did know that the villain was giving me a terrible reference and that was basically what the decision was coming down to in the end...so I kept trying...like the little engine that could.

And then one day, I quit.

I quit applying, I quit trying to get positions, I quit networking, I quit learning, I quit looking. 

I decided that I was right where I was supposed to be...failing.  That if my own father couldn't even bother to give me a reference so that I could keep food on the table for his grandchildren...if he could put me in the situation to lose my home, cancel my disabled child's medical insurance without notice (along with the rest of the families)...If he could retain attorneys and require that I hire one too (therefore having to cash in all of my retirement accounts), if he could forget that I was his daughter...If he could treat me like a competitor and not family...then why should anyone else give me a chance?  Why should I keep trying.

So I quit.

But it's been 2 years and 9 months and I have to say, I'm sort of sick of being afraid.  So I started something new.  I went and got my real estate license and signed on all of the dotted lines.

And now it is up to me to start moving forward.  But that's why I've been so tired...because I don't want to start...because I am afraid to fail.  I am afraid that he was right and that I'll always be a loser.  I am afraid that the voice that is him in the back of my head will make me fail.  I am afraid that all of the disappointment that I felt, that my family felt will resurface.

But I can't feel that way forever right?  And how do I overcome that?  I have to just start.

So today, I ordered my business cards, finished setting up my mls accounts, set up my home office, made a list of things that I needed and made an appointment for my training to start...all while really wanting to lay down and take a nap.

Who knows, maybe I'll fail, maybe I won't but my hope is that I will at least succeed in proving the villain wrong...that I will survive without him and I will be successful despite of him.

Tuesday, June 21, 2011

Control Freak

I am a control freak (I can hear all of my friends & family say...no, not you!!!).

I like to have control over everything...I've talked before about how that OCD control freak behavior was intensified when Hailey was born.  The strong need to control everything else, since I couldn't control her disorder.

So my New Years Resolution was to let go of some of those things.  Here are some of my successes (and my failures).

SUCCESS:  I've finally let go of my addiction to cigarettes.  I quit in January and have only had 3 cigarettes since the day I chose to quit.

FAILURE:  I can't seem to lose the 10 pounds that not smoking has slapped on my hip area & I can't get hubby to want to quit no matter what tactic I've used.

SUCCESS:  I've finally let hubby take over the finances in the house.  I decided that if we don't have savings or the bills don't get paid on time, I DO NOT care!  The finances make me actually want to scream all of the time and it has been a huge relief to not control that.

FAILURE:  It's only been a few days since I've let go of the finances & I'm still sneaking peaks at the bank accounts to see how he's doing (shhhhh...lucky he never reads my blog!!)

SUCCESS:  I only allow myself to do the laundry 2 times a week.

FAILURE:  I can't possibly leave garbage in the bathroom garbage cans, no matter how I hard I try.

SUCCESS:  I let go of the need to control the manner & way that I made up with my sister and her best friend after a huge camping blowout disaster last year...no matter what they did, I still dug my heels in and refused to forgive either of them...when I let go of that, I found that I wasn't even angry (oh and I discovered over the last few weeks that there are worse things than our stupid fight).

FAILURE:  It took me 6 months of trying to make myself let it all go & in the meantime, I acted like a complete jerk and did things that were ridiculous and unspeakable...basically acting like a 13 year old in a 35 year old body!

SUCCESS:  I let go of trying to make everyone happy all of the time.  I have found that I am much happier since I stopped trying to make other people happy. 

FAILURE:  I am still trying to balance the concept of not needing to make anyone else happy and not caring how other people feel...It's a fine line that I'm still balancing.

So you see, most of the successes are things that I am still working on...who knows I'll probably fail and I'm certainly not really successful at leaving the house messy (at all...in fact right now, I'm looking over and there is a dish in the sink & it is making me crazy!!).  And my failures are certainly tied right into my successes...but I am trying.  I am trying to be much less of a control freak and not lose who I am all at the same time.  Because let's face it, part of the reason that I am who I am is because I can't leave that tissue in the bathroom garbage and that I asked for a gas leaf blower for mother's day so that I could have a perfectly clean & free from dust garage every day!!  Baby steps, you know?