Tuesday, December 28, 2010

My yearly week off

Every year Hailey goes to her dads for the week after Christmas.



I should be sad...right?  Well I am not. 

Don't get me wrong.  I miss her to the depths of my soul.  I think of her more during these 7 days each year than I ever do the rest of the year.  I have more time to think of her.  The rest of the year, I am busy with her...being with her...handling things.

This week I have nothing to handle.  I just have time.

I have time to catch up on every piece of laundry and bedding in the entire house...to put the holiday decorations away correctly...to find a home for all of the new presents...to have coffee with a friend...to take my littlest one to the movies and skating...to sleep in...to go to the gym...to wander aimlessly around Target (my secret luxury when I get an hour to myself!!)...to wash my face before I go to bed EVERY NIGHT!!...to watch all of my DVRs of General Hospital...to have my hair done (Thursday!!)

I just have time.  It is a gift.  It is a replenishing week for me.

Then I have the energy and the patience to be a better mother for her the rest of the year.

And about 3 days into the week (so yesterday) I start to realize what joy she brings to our house.

Especially when we are skating and the little one looks up at me and says, "Mommy, I don't think we should do anything else fun until Hailey comes home".

Thursday, December 23, 2010

All it takes

Lately I've been feeling a little defeated...a little resigned...a little sad.

Things have just been hard.  Hailey has been difficult...Aubrey has been difficult.

I'm missing an important piece of my family this holiday season through no one's fault but my own stubborn pride.

I'm missing old friends who have fallen off because I live in a complicated world.

But all it takes is one day to boost my spirits.  One day where my girls don't fight or bicker or pull each other's hair.  One day where the baby poops in the potty without screaming bloody murder.  One day where Hailey smiles and giggles all day.  One day where the teenager wants to ride in the car with me while I run errands so he can chat with me. One day where my husband comes home early enough to eat dinner with us.

One day where my girls cuddle up in the bed together first thing in the morning and ask me to go away so they can snuggle...


Yesterday was that day...and hopefully yesterday can rub off on tomorrow and the next day and the next day.

Because all it takes is my children smiling at me to turn it all around and remind me of who I am.

Thursday, December 16, 2010

When Mommy Cries

I don't cry very often...Hardly ever.  I cried all of my tears almost 10 years ago...my tear ducts are pretty dry and I get mad, not sad.

So when Mommy cries, everyone knows it's something major.

Aubrey had her school Christmas party today and Hailey is out of school, so I had to take her with me to the party.  I actually thought about keeping Aubrey home and hoping she just forgot about it...That's how much of an ordeal it is to take Hailey into the 3 year old classroom.  But then I thought, well that's not fair to Aubrey.  She shouldn't have to miss it...

So I came up with a plan...I put Hailey in her wheelchair and figured I'd just park it out of the way of the other children so she couldn't reach any one's hair or head or arm or shirt or leg or...you get the picture...so she couldn't reach anyone or anything.

And I did...but it didn't matter.

See what I can't control is the other children and they were zipping past her and running about with their cookies in their little hands and she really wanted their hair, and probably their cookie too...So, I moved her back some more out of the running circle of wild 3 year olds.

There was a "book exchange" and the little girl who got Aubrey's book, came up to thank Aubrey.  I didn't even think about the fact that Hailey had seen me wrap that book and probably thought that it was for her...So I'm sure in her mind she was thinking, "WHAT THE HELL ARE YOU DOING WITH MY BOOK THAT MY MOM IS GOING TO GIVE ME ON CHRISTMAS????????"...And I was too late when Hailey leaned over, grabbed the prized book and whacked the little girl over the head with it.


The prized book or shall we say...the latest weapon.

Tons of tears (it wasn't THAT hard of a whack but the girl was shocked)...and the mom says that it's OK but they all move as far to the other side of the room as they can possibly get...I think I muttered something like, "she'll be back to school in January so you won't have to see her anymore".

And I want to yell..."that is why we call her lilly long arms...she can literally make her arms extend to reach anything when she is determined"...and I want to explain that I try to be fast enough all the time and anticipate her every move but sometimes I FAIL...

Normally, I am not embarrassed of Hailey's behavior.  I can usually keep her under control and away from situations like this.  I don't apologize for her flapping or screaming or having to hold her hands as we walk by other children...

But today, I was humiliated.  And I didn't know how to fix it...I couldn't...And Aubrey was crying that Hailey always ruins her party and then I started to cry...in the classroom...in front of 16 sets of parents and grandparents and two very shocked teachers...And I fled...I scooped Aubrey up in one arm and pushed Hailey out of there like a whirlwind...all while hysterically crying.

Sometimes there are times like these when I wish I had that magic pill to fix her...Some type of hocus pocus magic trick to make her stop hurting other children...And then I feel guilty.

Guilty because when you are a special needs parent, you are expected to "embrace" the new life...that is how you get through it.  You accept it and deal with it and move forward...You don't make excuses...You challenge people to look at her so that you can prove you don't care...that it doesn't matter...that she is perfect in your eyes.

The fact of the matter is though that there will always be days like these...unexpected moments that sneak up on you and throw you into the depths of sadness and guilt and embarrassment...just like it was the first time someone looked at her funny...

Saturday, December 11, 2010

How she teaches just by being...

I had never heard of cri du chat when I was 14...I didn't really understand what chromosomes were.  I am not really even sure if I grasped anything more complex than who I was going to the next dance with.

My son is different because of his sister.

Because my son is different...so are his friends.

His buddy came over for dinner last night.  His sister just loves this friend of her brothers.  She is always smiling at him and laughing when he is around.  I am normally concerned because when she really likes someone, she leaves them no space.  She is in this poor teenagers face the entire time that he is at our house.  But he doesn't seem to mind.  And if she gets irritating, he is comfortable telling her so!

At dinner, we are chatting about all of our days and this friend of my son says that his teacher was giving a lecture today on abnormal chromosomes (which seems a little advanced to me for 14 year olds but they are in a Bio Tech Academy so I guess that explains it)...so he goes on to say that, "my teacher totally butchered Hailey's disorder"...I asked him what he meant and he says, "she called it cry do chat not cri du chat"...then he goes on to explain that he made sure that he let her know that she had butchered it and gave her my name in case she wanted to check with someone and that he knew what he was talking about!

I was so amazed at him...This teenager who is so understanding and nice to her...who is not uncomfortable when she touches him or laughs at him...who is comfortable enough around her to tell her to back off if she is driving him crazy...Who would stand up and explain to a high school teacher that she didn't pronounce it correctly and educate her.

I know that she has taught our family a new way of looking at things, compassion, understanding and a whole new meaning of love...What I had failed to see until then was how far her teaching really goes and how it fans out into our community...

It left me happy and smiling to know that this teenager is exceptional and we are lucky to know him...Also to know that this rare genetic disorder is being discussed and talked about in our community high school because of her...

Friday, December 10, 2010

We got behind...But our hero is saving the day.

A few months ago someone stole a lot of money from our home.  Not a break in but someone who was invited into our house.  We have never been able to figure out who it was but it pretty much put an end to my blind trust of people.

We weren't really caught up financially from the business disaster of 2008 but we were close...

That theft put us back in the hole...It also cancelled our family vacation to Disneyland for the year.

It was sad...I was angry...and felt beaten.  But we stood back up and started catching up again.

Then our car needed to be repaired or replaced and we had to dump all of the new catch up money into a new car...GEEZ were we ever going to catch a break?

So we figured that we would be caught up again in a few months and we scaled back on the Christmas gifts...and we budgeted and started to save again...

Last week we got our big break (or at least a financial break)  Hubby has been asked to work double overtime with no days off...it sounded great & we'd be out of the hole within 3 weeks instead of 3 months...

But here's the catch...Hubby has been working for 12 days with no break...Drives 2 hours to work, works 12-13 hours then drives 2 hours home...Then he eats dinner, sleeps for 6 hours or so and starts again.  The kiddos haven't seen him except when he kisses them while they are asleep for 2 weeks...and I'm normally asleep when he walks in and barely awake when he leaves.

You'd think he'd be cranky or irritated or angry that he has to do this...but he's not.  He just called me to ask me if we were on our way to the Polar Express Train Ride downtown...tickets that he bought us with all of his hard work...and asked me to call him and tell him how much fun the girls had.  This morning when he kissed me goodbye, I asked him if he was exhausted...he said no, he was glad that he was able to support us.  He also called me to apologize that he wasn't able to put the Christmas lights up yet and offered to do it tonight when he got off work.

My hubby is literally the best man that I have ever known.  That he would marry me and accept my two children (one having cri du chat/autism/hearing loss/strabismus/sensory disorder etc etc etc) as his own, astounds me...

That he would then work 90 hours in a week and drive 28 hours on top of that to and from work just so that I can stay home and take care of the children...so that we can catch up and not be behind on anything...so that sometime in the next few months the kids can have their vacation....

WOW...he amazes me...I am one lucky girl...And our hero is saving the day.

Thursday, December 2, 2010

Speech Therapy...Again...

We started speech therapy today, again...

She originally started at 1 year old. The school district terminated traditional speech therapy last year.  The team decided (yes, I was there) that we should be focusing on her Dynavox.  And so I agreed.

So over the year, she became more and more agitated...This "Dynavox" or "Talker" or "Speech Computer" or "Augmentative Communication Device" just wasn't working for her.  She can't carry it because it is too heavy....It is complicated and hard to navigate...she ends up throwing it or just plain not using it at all.  I am sure it works fine at school but in a little less structured environment...IT IS A PAIN IN HER BUTT!!  She would rather sign or point or grab your hand and show you what she wants.  She just hates the stupid thing at home.

We also noticed that she began backsliding in her speech altogether...She wasn't making sounds anymore, not even saying Mama or BoBo (brother) like she used to...

So I requested a new evaluation...blah blah blah...evaluation, IEP, arguing, debating and BOOM...she is back in speech therapy.  We have 6 months to prove that she can make some strides now that she has her hearing aides...6 months????  Jeez it took her 4 years to utter a sound...6 months is closing in on us and we have barely even started.

So we started speech therapy...again...I am really hoping that she will begin to speak...I think this is our last shot...I don't give up easily and I am not giving up on her.

So this is my plea to GOD or whoever is listening...Please Please Please let her speak...She has so many challenges...so many frustrations...Just let her speak a little bit...Just the basic stuff...Please Please...