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.

Tuesday, December 16, 2014

What A Difference A Year Makes!

A year ago we were in Charlottesville and Alex had her hamstring lengthening and tendon release surgery. 
 
I'm so very thankful that our surgeries have been limited - I really don't know how some of my friends who do this multiple times a year get through it, it's so taxing on every single ounce of your being.
 
I said it last year and I'll say it again, it's hard watching your baby go from happy....
 
...to this....
 ....to this....

...and even to this once you are back home.

Alex still requires 100% assistance in everything, including shifting her body weight.  She's still dead weight when you pick her up and last week I was out of commission for a few days with muscle spasms in my back.  I rely a ton on Aaron lifting her from place to place so getting her to help assist with transferring and general maneuvering is huge on our priority list, especially the older she gets.  It's something we have been working on for YEARS and while we still have a long way to go to get her legs straight and to get her to help, the surgery has definitely made a difference and she has come such a long way and I'm so proud of her. 

December and January last year were tough months for all of us.  She was in a ton of pain, it was extremely hard to position her and keep her comfortable and it's not something that I've forgotten over the last year.  But.... this was my girl at therapy this morning !


 
God I love that smile!

She loves this new walker.  It is a BEAR to get her into it - I'll have to take separate pictures of that process, but it is so worth it to see her smile and get so excited.  She makes me laugh because she always swipes her right foot three or four times before actually propelling herself forward - she reminds me of a horse :P    We need an indoor track/therapy room at our house or move to someplace warmer!  There's nowhere for her to walk downstairs without bumping into something each step so now that it's colder outside we're using it less and less - I see lots of mall walking over the winter break in our future!  Who knows - maybe a year from now she'll be walking! 

Saturday, December 13, 2014

Santa's Merry Mall

Earlier this week we attended "Santa's Merry Mall" sponsored by Jacob's Chance.  


While I was helping set up Alex loved her one on one attention with Mr. Eric who is the Director of Buddy Ball.

I think she's trying to tell him what team she wants to be on next :) 


The first part of the evening all of the kids were paired up with a buddy and they were able to shop for their family members and then have their presents wrapped.  It really didn't dawn on me until I saw this picture that someone else took that this will be the very first Christmas that there are presents under the tree, from Alex, for all of us that she helped pick out and that I have NO clue what they are. Sometimes you don't even realize what you're missing until it's right there in front of your face. 


After shopping and a fun craft we headed outside for a special visitor who arrived in style!



Ho, Ho, Ho - welcome Santa!!

All of the kids were so excited to see Santa - including Alex (and Mr. Scott!!) 

Thanks to all of the amazing people at Movement Mortgage (the corporate sponsor for Jacob's Chance), all of the kids from buddy ball, and their siblings, received a present from Santa, all based on their likes and interests.

Alex receiving her present from Santa and his snow angel :) 



Thank you Santa!

Alex was so excited with her present.  She was so engaged with the process it was awesome.


My name is upside down Daddy!
That's ok, I'm still super happy about my present!

We put the present on her lap and she held on to it the entire time.  She kept rubbing her hand over the top of the box.


Zach's turn!


Two very happy present receivers :) 

We had a fun evening!  A big thank you to Kate for all of her hard work and dedication to Jacob's Chance and for giving our kids these fabulous opportunities!

Wednesday, December 3, 2014

I'm Thankful!

A week late, but better late than never!  We had a very nice Thanksgiving this year.  While things are never perfect, I have so much to be thankful for. 

I'm thankful for every single person in this picture and for what they mean to me.


I'm thankful for my sister missing from that picture because she was taking the picture :)  I'm thankful for her and the bond that grows each year as sisters.  

I'm thankful that Shane received a clean bill of health last month.

I'm thankful we have our own inside jokes and that this dish makes my husband so darn happy!


I'm thankful for my dad and for every turkey he has carved.  Other than one Thanksgiving while they were travelling for a wedding, my dad has carved every single turkey I have ever eaten in my lifetime!


I'm thankful for extended family and for how they love my family so.



I'm thankful for these two beauties who have to grab their lipstick every time they see my camera!


I'm thankful for my husband who is the best possible Daddy I could have ever dreamed of. 


I'm thankful that he never ceases to amaze me when it comes to our children.  I'm thankful that he steps up to plate when things get hard when most would want to turn and run.  I'm thankful for his work ethic and for how he supports his family.  I'm thankful that he loves me the way he does.

I'm thankful for my healthy son who makes my heart happy every single day.  I'm thankful for his sense of humor, for his compassionate ways.  I'm thankful that he's a go with the flow kind of kid.  I'm thankful that he has such a sweet soul.  I'm thankful that he still hugs me out of the blue and tells me he loves me.  


I'm thankful for new beginnings.


I'm thankful for the immeasurable amount of love my girl is surrounded by on a daily basis.







I'm thankful for parents who have been married for over 46 years and have stuck by each other through thick and thin.  I'm thankful that they support us in every way possible and that they are always just a phone call away.  

(and I'm thankful my mom doesn't mind being covered in Allie Bean drool!)

I'm thankful for ALL of Aaron's family and the sacrifices they all make to be with us when they can and support us in any way they can between the miles.



And yes, I'm even thankful for this little ball of fluff that makes me smile every day.


I'm SO thankful for all of my friends and for those that make me laugh and make me cry.  Sometimes good, sometimes bad.  I'm also so grateful for my great "neighbors" :)  I'm thankful for my job and for my bosses who hired me despite knowing my circumstances and how crazy my life can be at times. I'm thankful for Alex's nurse, Tammy, and how she wants to do what's best for her all the time.  I'm thankful for Shannon, Alex's physical therapist, that never gives up on her and is always helping her and pushing her to her fullest.  I'm thankful for Alex's new teacher, Ms.Hadji, for believing in her so much and for all of her new friends in middle school.  I'm thankful she has the greatest friend, Ms. Jennifer, and that Jennifer loves to hangout with her and think she's the coolest.

I'm thankful and forever grateful for the amazing organizations like Inclusive Racing, Jacob's Chance and We Heart Harlie and Friends that give Alex the incredible opportunities they do for without them she would not be able to participate in the things that she does.  I'm thankful that because of those organizations I have met some of the most amazing, compassionate and caring people that I'm lucky enough to call friends.

I am thankful for this beautiful girl who has taught me so much.  I'm thankful for all of the lessons she has taught me and for showing me I'm stronger than I ever thought I could be.  I'm thankful that she has taught me to appreciate the little things.  I'm thankful that she has shown me unconditional love.  I'm thankful that she's so forgiving when I don't get it right.  I'm thankful for all of the amazing people I have in my life because of her.  I'm thankful that she is happy.  



And I'm thankful for all of you who read my blog - may you all be blessed this holiday season!


Wednesday, November 26, 2014

It's Official....

We have a teenager :)

My sweet girl turned 13 on Sunday.


On Friday afternoon I went to her school to bring cupcakes to celebrate with her class.  Her teacher was so sweet and put flowers on the table and set nice napkins out :)


When I got to her classroom she wasn't there, she was in her elective class, which is Art.  Once the bell rang a boy that I didn't recognize walked into her classroom and handed me a card he had made for Alex for her birthday.  


He asked that we please made sure we turned the card over and read it to Alex.  I don't think he knew I was her mom, and I'm not even sure how he knew it was her birthday, but the card touched me in such a profound way.  He had drawn a picture of the art room on the front and on the back he wrote this:

Alex is the best and the coolest
She is awesome and the nicest person I have ever met
She is very lady like, she is sweet and she is filled with dreams 
and he signed it - Your friend.

I asked her teacher who the boy was and she said she had no idea. She said that Alex had so many friends at school and most were "typical" peers.  I really cannot put into words how that makes me feel.  I am so happy for Alex and her new school experience.  

On Saturday we had her friends over to celebrate - it was a full house :) 

Alex enjoyed getting lots of birthday love from her friend Makayla




And her best friend Jule!

And she really loves when you sing Happy Birthday to her!




When we were done singing she wanted lots of hugs and kisses from us - she kept pulling us to her





After cake she was completely spoiled with presents!

It was a great day for her and we felt so much love for her by everyone that was there.  We were sad for those that weren't able to be with us but know she is just as loved by those that couldn't be there.  

On Sunday morning she got a personal birthday serenade from Zach :)

We spent the day together as a family and took her out shopping for her to pick out a birthday present.



Alex loves Sing-A-Long dvd's - she has every Sing-A-Long princess dvd and she loves them, and she loves the movie Frozen, so when we saw there was a Frozen Sing A Long DVD, it was  a no brainer! Only we were a little disappointed when we got home - we thought it would just be a compilation of Frozen songs, but it was actually the whole movie in it's entirety, just with the words on the bottom of the screen.  Oh well.  Alex loves music too, and she got some great music CD's for her birthday so she also got a new pair of Frozen headphones that she is really enjoying.

It's so funny to see her rocking out to music, she looks just a typical teenager :) 

Happy 13th birthday Alex.  Welcome to your teen years!  We know the years ahead will hold more exciting adventures for you and we'll make sure you enjoy all there is for you to enjoy.  You are so loved my girl.