I don't need a doctor to diagnose me...thanks though.

When I was a little girl, I always had a very clean room.  My car was clean as I entered the driving era.  My first apartment was neat and tidy.  My first house was clean.  I always liked things in order and neat and clean.  I was raised that way.  My mother is the same...neat and tidy...

When Hailey was born that neat and tidy attitude took on a mind of its own.  My life was out of control.  I didn't handle anything very well.  I cried at the drop of a hat.  I yelled at friends and family and strangers for that matter.

Hailey age 1 year

But I could control some things.  I could control how organized I was.  I could control how clean the house was.  I could control the laundry and the dishes and the material things in our house.  I could control how neat the yard was.  I could control how everything looked on the outside even though my insides were a disaster.

Mom and Hailey age 1.5 years

I'm still that way.  I still have some pretty major elements of that behavior.  I have learned to manage it pretty well so that I only detail clean the house once a week and I don't obsess over it every minute of every day.  But I can't stand to have garbage in the bathroom garbage cans.  I can't stand to have laundry in the hampers.  I can't stand to have dishes in the sink.

When I am upset or stressed or overwhelmed...I clean things.

Does that make me weird? ~ probably.  dysfunctional? ~ in some things.  crazy? ~ aren't we all in our own ways? 

The truth is...it works for me.  It works for our family.  It works for my husband and for my children.  I was asked by one of Hailey's doctors if I was ever diagnosed...no I wasn't...do we all need a label? 

Can't we just say that it is the way that I deal? 




Mom, Aubrey age 3 & Hailey age 10


When you think that it is a weird way to be...just think...I could have turned to drugs or alcohol or other madness...instead I turned to cleaning ~ I don't think that's so bad!!

Words...real words!

It's been a long time since I've blogged.  Our family has had some crisis moments in the last month and I have had so many intimate feelings with these problems that I haven't been able to write.  I haven't been able to put my emotions into words that made any sense to anyone.  But I'm back...feeling a little bit recovered and able to take on the world once again...

Hailey has been going to speech therapy once a week since her last IEP.  She has until May to show improvement in her speech and be approved for continuing speech therapy. 

She doesn't like it.  At all.  It is hard for her.  She is frustrated.

But she tries so hard.

And finally...she can speak!!

OK so there are only a couple of words but hey, that's better than a few months ago!

She can say go, coco (our dogs name), HA (short for Hailey, we are working on the whole word), mine (you better believe she learned this one first!!) and most importantly...the most useful word in her new little vocabulary is (drum roll please...) UT OH!!

Oh my that word is the best...the water splashed out of the tub (ut oh)...the barbie fell (ok was thrown) down the stairs (ut oh)...the food jumped (ok was dumped) off of the plate (ut oh)...I could go on and on...

But I love Love LOVE it...I don't even care if it comes right after throwing the poor barbie doll down the stairs!  It is an amazing word that she can say consistently and she is so PROUD!

PROUD PROUD PROUD of herself and I love it (did I say that already?)

I am so excited for this new development and so proud of her for trying so hard to do it.  I am hoping that she continues to learn new words.

I think that it is most important to remember in this situation the same thing that I always say to my son "just do your best"...and that is all I expect of her as well...her best & I am so proud of her!

I remember...I see

Looking back...I remember when Hailey was fully included in a regular Kindergarten classroom.  I remember that she had her 6th birthday party and 6 regular developing girls came from her class!  I remember that they jumped in the jump house in the rain laughing and playing.  I remember that they dried their wet little feet by the fire.  I remember that Hailey smiled and played with them.  I remember that...

Looking back...I don't remember when things changed.  I don't remember when the regular developing children began to shy away from her.  I don't remember when the stares from children at school began.  I don't remember when she began to pull other children's hair.  I don't remember when she began to strip her clothes off when she was having a fit.  I don't remember when...

Looking back...I remember when she was a baby.  I remember that we use to go on playdates with Zach's friends.  I remember that I use to sit with the other mommies and laugh and watch our kids play on the playground.  I remember that she use to smile at the clouds.  I remember that I could take her anywhere.

Looking back...I don't remember when I stopped being able to take her anywhere.  I don't remember when I stopped being able to go on playdates with other children.  I don't remember when I stopped having a connection with other mommies.  I don't remember when...

But now...I do see that she still smiles at the clouds.  I do see that she still loves to sit by the fire and warm her toesies.  I do see that we can have playdates with Aubrey and Mommy and Hailey.  I do see that she has 2 friends from her class coming to her party.  I do see that she still laughs and plays with those children.  I do see that she is growing and developing into a lovely young lady.  I do see...

I do see how much joy she brings us and how much she is loved....

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".

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.

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...

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...