I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, September 24, 2014

Some Updates

Alex is doing great in middle school.  I love the classroom that she is in, how they challenge her and more importantly, how they believe in her.  Her teacher sends me pictures through out the day - pictures of her using switches to communicate, to turn pages on a computer based book.  Here she's learning about Abraham Lincoln.

Once a month a group of therapy dogs come to the school to visit her classroom.  It was such a nice treat to get these while I was at work and seeing her clearly enjoying herself.

She has homework that she has to complete most nights as well.  She's never had homework before now so I'm trying to mirror some of the ways she is communicating at school at home, especially with homework.  We use voice output switches to give her a voice.  It amazes me how much she knows.  We SO don't give her enough credit.  


We also started working with a new speech therapist.  It's a bit of a hike and they don't accept insurance, but Alex REALLY responds to her and she has given us a lot of tools to work with.  She is patient with Alex and she explains every reasoning behind what she's asking Alex to do and that's been very educational for me.  I find myself watching in a bit of amazement at how well she listens and carries out what's being asked of her.  Closing her mouth is a huge obstacle and working on less drooling is definitely on everyone's Top 10 list.  Has been for a while.  But look at the lip closure here!

She's doing exciting things and I really feel like her new teacher and her new therapist are just the combination that we need to tap into her world.  

This past Saturday was a crazy busy day for us.  We started early with Zach being in the Glen Allen Day parade.  He was on his swim team's float.  

Once the parade was over we had to high tail it over to Alex's football game.  She LOVES running around the football field.  I know her two buddies are getting in a pretty intense cardio workout! Everyone is always smiling, the kids are clearly having a great time - it really does something to your soul to watch them and the great people who come out to buddy up with the kids.  

Once her game was over we headed back over to Glen Allen Day.

Two of the causes near and dear to my heart had booths set-up.  Jacob's Chance, which is the group Alex plays football and all of her other sports through.

The second was We Heart Harlie and Friends.  Lynda did a great job setting up the booth - I think I own every color of the t-shirts she was selling, they are by far the most comfortable!

Friday, October 10th We HAUNT Harlie and Friends will be hosting a Halloween themed party at the Children's Museum.  I love the logo she created for the event.

Click here for more information or to sign-up!   I know Lynda has a lot of great things planned for that night!

A few nights ago Alex had a seizure - it was 4:20 in the morning and, unfortunately, it was the most intense that it's been in a while.  She has seizure pads all around her bed but she managed to hit a part of her bed that wasn't padded while she was seizing and her toes were hitting a wooden part as she was convulsing.  A few days later her big toe was extremely hot and swollen.  It was really red and you could see an infection was starting to settle in.  I wanted to soak her toes so I set her up her own little pedicure station.  When I turned the bubbles on the awe on her face was priceless.  If I could guess I would say she was looking at me like "And why have we not done this before now?!?"

Her poor toes get so beaten and battered.  Since she really only seizes when she sleeps, she's usually convulsing a bit before I get in to her room, and this last time she was so rigid I couldn't get her body position to change so I had to just put my hand in between the bed and her toes. Her toe still wasn't looking so hot when she went to therapy and she wasn't able to wear her braces so we had to set up a visit to her pediatrician. 

The pediatrician had to lance it so it could drain, so now we have matching band-aids!  Well, actually, her's is Daffy Duck - much cooler than mine :) 

Zach's had a spot right below his knee for a few months - I messed with it a bit and it actually got a little worse.  Looked like a wart.  Zach's been complaining that it hurts lately so this morning he was back to see his dermatologist.  The dermatologist said that normally she would just freeze things like that off, but given Zach's history with his ear now, she wanted to cut it out and send it to pathology, just to be on the safe side.  And so another 2 week clock begins.

Never a dull at the Hayes house, never a dull!

Monday, September 15, 2014

Are You Ready For Some FOOTBALL?!?

I signed Alex up for FLAG FOOTBALL!!  Alex plays baseball and basketball through Jacob's Chance/River City Buddy Ball and we decided to give football a try.  Alex loves to be on the move so baseball is a little challenging because there's a lot of down time, but football is pretty constant movement and she LOVED it!! :) 

Just look at that smile! :) 

For basketball her favorite buddy is Mr. Steve.  Needless to say she was quite happy to be reunited with him for football.  She kept wanting to hold his hand.

#8 for the Buccaneers!

Alex with Steve and Fernando, her other 'running back'!  

And it was fun seeing lots of our friends, like Kelly!

Time for some plays!!

Steve making sure Alex had a tight hold on the ball...

....before running in for a play!

The game was AWESOME!

Here's my other most favorite part of the morning.   This is Matthew.

Matthew has been so sweet and kind since the minute we first found Buddy Ball 3 years ago accidentally when we walked in early for one of Zach's basketball games.  I have countless pictures of Alex and Matthew and one special one of them staring at each other that Matthew's mom gave me that's framed in her room.  We love Matthew.

During the game a few of us decided that we were going to plan a home coming dance for the kids - just like every other school and football team gets to have.  So we are going to have a tailgate/football game in the morning and then a dance for the kids in the evening. When Jennifer, Matthew's mom, mentioned the dance to Matthew he walked over to Alex and she immediately grabbed his hand.  He said "Alex, I have something to ask you - would you like to go to the home coming dance with me?!?"  And Alex smiled and giggled and starting flapping her arms up and down - so I turned to Matthew and said, "Matthew, I do believe Alex just accepted your invitation!"  And with that Matthew turned around to his mother and said, "Now I need to get a tux.....and after a second he added on.....and some cologne!"   Right after that Zach turned to me and said "Mom, I think I need to be a chaperone!"  What a smile that brought to my face - and  I still smile every time I think about it.

We had such a great morning - I can't wait for next Saturday - GO BUCCANEERS! :) 

Thursday, September 11, 2014

Remembering 9-11

This is a post I wrote on September 11, 2011, but the sentiments are still the same.

It was February 26, 1993.  I was 21 years old and working at my very first job out of school working in the HR department for Guy Carpenter, a Reinsurance Company, located in 2 World Trade Center.  It was about 12:15 and I was sitting at my desk talking to my sister who also worked in downtown Manhattan a few blocks from me and we were making lunch plans.   All of a sudden all of the lights went out and my chair had shot back about a foot from where I was initially sitting.  I told my sister something strange had just happened and I would have to call her back.  Little did I know when I hung up what the next 8 hours, or the next three months for that matter, lay ahead.

Lots of phone calls were made to the security desk and we were initially informed that lightning hit the building.  It was snowing out our windows, but given how high up we were, it wasn't uncommon to see snow when it was actually raining down at the street level.  Initially we were told to take a long lunch... until we got to the elevators to find they weren't working - we could actually hear the people yelling who were trapped inside the elevators.  We all filed to the stair wells only to find that it was jammed with all of the people from the 50+ floors above us trying to get out as well.  There was no emergency lighting in the stair wells and you literally could not see your hand in front of your face.  To say it was scary would be an understatement.

1993 was not the age of cell phones or social media so by the time I got out of the building, 6 hours later, I still had no clue that I had actually experienced the first attack on the World Trade Centers.  My parents were living in Virginia, and they actually knew what happened before I did.  They hadn't heard from me, so they had no idea if I was ok or not. 

By the time I finally made it back to where I was living on Staten Island it was hours later because tunnels, public transportation and the ferries had all been shut down.  It wasn't until I got home and looked in a mirror that I realized the true impact of the day.  I was completely covered in black soot.  I had been wearing a white sweater that was completely black.  For weeks after, every time I washed my hair or blew my nose, there was the black sooty reminder of that day.

I think I was in shock in the first few days.  I cried a little when I saw the footage on TV or heard the President talk about it, but for the most part I kept everything bottled in.  Our company had to be relocated to temporary office space until the building was reopened.  Some people did not return to work for fear of what else was to come.  I did go back to work in 2 World Trade for another year and a half, but I don't think I truly dealt with all of my emotions from that day until I had actually moved to Virginia and saw the footage on TV from the 1995 Oklahoma bombing.  I remember just staring at the TV and sobbing.  I didn't know anyone in Oklahoma, it didn't directly impact me, but I could relate, and that's when it all hit me.

Fast forward to 2001.  I am somewhat of a newly wed and ecstatic to be 7 months pregnant with our first baby.  Again, I was at work, the company I still work for now, and someone came running back to the back offices where I was and said that planes had hit the World Trade Center.  We had no TV's in our office at the time so I was scrambling to find a radio to hear what was going on.  I couldn't for the life of me comprehend what I was hearing.  The towers had fallen, how could that be?  They fell after only hours after the initial impacts.  Knowing how long it took me to get out of the building that day back in 1993 I knew the devastation and amount of lives that were lost was going to be huge - but in retrospect I really had no idea.  I remember my boss arriving to work and asking me why I was crying so uncontrollably.  He sent me home.  When I got home and saw over and over again the towers crumbling down all I could think about was thank God it was the beginning of September and there were no class trips to the Observation Deck - trips I had taken numerous times as an elementary school student.  I kept thinking somewhere in all of that ruble was the desk I sat in.  The shops in the concourse I used to shop in.  The newspaper stand I used to buy my magazines.  The Ben and Jerry's I used to get my afternoon treat from.  The subway station I used to catch my train.  They showed papers flying all around and all I could think was somewhere in all of that was my personnel file.  There were people that I knew that were still inside that building.

Today I went to church and before the preacher started his sermon the lights dimmed and a screen with with words September 11, 2001 appeared.  I didn't even have to see the horrible images that followed before I started crying.  It's been 10 years now and one would think that maybe seeing those images, or hearing the stories from the people who had lost their whole lives that day when a loved one didn't make it home, or stories of the survivors or hero's would get easier.  For me though, each passing year seems to get just a little bit harder. Maybe it's because I was born and raised in New York, maybe it's because of all my memories, maybe it's because I'm a mom now and I know that my children will never know the world I knew before it became such a scary place.  Maybe it's because I'm older and I've come to the realization that I'm not as immortal as I used to think I was.  Either way - September 11 - I will not forget....I will always remember.  

Tuesday, September 2, 2014

5th and 6th Grade

Obviously I was pretty much MIA for blogging all of August.  Quite frankly, I was not in my happy place - and it's really hard for me to blog when I feel like that.  I like to think of myself normally as a happy person who is typically a go with the flow kind of girl, but that girl disappeared for a little bit.  This summer just sucked.  Plain and simple  It started crappy in May with my tonsil infection, got worse with Aaron and Zach's melanoma news, vacation fell apart and I topped it off by rearranging my big toe nail and the surrounding skin at a baseball game that's left me hobbling with a big stupid bandage for almost two weeks now and is going to take two full months to heal. And that's just on top of all of the other challenges we face on a daily basis with Alex. Honestly, how much more should I have to take?!?  If this is a test, I really wish I could just pass already! Over it. All of it!   I'm so not sorry summer is over.  There I said it - I can move on!

Today I was bound and determined to wake up with a new attitude.  First day of school!  Always exciting, and it's a big year for both of the kids.  Zach is in 5th grade, top of the food chain as he likes to say and Alex is starting  middle school....and that's huge for her.  We have visited the school on numerous occasions, I absolutely LOVE her teacher, I've heard amazing things about her and it's obvious it's all true and I can't explain it, but I just know this is going to be a year of big things with her.  We are starting a new speech therapy as well with a therapist who is equally amazing and I think the combo is exactly what Alex needs.

We've been telling Alex for the last few days that the bus was coming back and that she was going to go to "big girl" school and every time we told her that she would smile so this morning when I woke her up and told her it was time for the bus she got very excited.

All dressed and ready for 6th grade!


The bus was running behind but she was waiting very patiently at the end of the driveway - she kept looking up and down the street looking for her favorite ride.

...and when it arrived she was one happy girl.  

Zach had his last first day of elementary school.  I cannot believe how fast the years have gone, it really does feel like just yesterday he was excited to be going to kindergarten.

First day of Kindergarten.....

First day of Fifth grade:

Walking into school for the very first time...

Walking in like big man on campus this morning.

This afternoon after a full first day.

Alex had a very long day - she left on the bus a little after 8 this morning and didn't get back home until almost 4:15 - she was one tired little girl!  Tammy said she had a really good day, she was doted on by all of the staff, girls from her school last year came to speak to her in the cafeteria, she went to gym, to science and she was engaged in all of her activities in the classroom.  

Zach was anxiously waiting for her to get home

...and she was so very happy to spend time with him

 It was heartwarming watching them giggle and being silly with each other

Their looks at each other speaks volumes...

...and definitely encourages my decision to have a new attitude. So here is to only good things on the horizon this Fall and to a great school year!