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.


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?