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, 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. 

Tuesday, November 18, 2014

Hard Work Does Pay Off!!

Sorry if we are Facebook friends and you have seen this already!!
A few months ago I went to a demo at Hope Therapy for a new piece of equipment called a TAOS. It's different in that it's considered more of an orthodic than an actual piece of equipment like a walker.  Shannon and I discussed it a bunch, I watched a few online videos and loved that it was forward facing and I loved that it was 'hands free'.  We have tried LOTS and LOTS of different types of equipment with Alex - I swear my house looks like a therapy equipment store.  She's done well in her last walker, but she did quite a bit of hanging in it and Shannon is constantly moving parts and pieces around and adding padding and removing straps and she still has to have her legs blocked so she can shift her weight to take steps. I shared the last video of her walking and you can really see how far she's come with the motor mapping.  We had therapy first thing this morning with Shannon and Alex was not feeling good, she cried and complained for the first 45 minutes of her appointment. She worked hard at school and had to have Motrin twice so I was not sure how her appointment to get her TAOS this afternoon was going to go.

As expected, she was grumpy when they were messing with her trying to fit it.  I fully expected her to protest and continue to get mad BUT once they stood her up, she.....

walked by HERSELF!!!  Look at her smiling - she is so happy and proud of herself!!!!!  As she should be.  I'm SO proud of her.  And happy for her!  It was very emotional and Tammy and I couldn't help but cry.  

Alex is going to be 13 this weekend.  We have been going to physical therapy every single week since she was 13 weeks old.  This has been a l.o.n.g. time coming.  We still have a long way to go, but we've come so far.  

“Don't ever give up. 
 Don't ever give in. 
 Don't ever stop trying. 
 Don't ever sell out. 
 And if you find yourself succumbing to one of the above for a brief moment, 
 pick yourself up, brush yourself off, whisper a prayer, and start where you left off.
 But never, ever, ever give up.” 
~Richelle E. Goodrich

Sunday, November 16, 2014

Richmond Half Marathon!

Yesterday proved to be another great experience with Inclusive Racing.  This was Alex's fifth race, she's participated in two 5k's, an 8K, a 10K and now her first half marathon!!!

We started our day early at 4:30AM and headed downtown by 6AM.  And it was COLD!!!  We were a little concerned about Alex participating with the cold front that came in the night before and it was a cold, cold, 20 degrees when we left the house.  

We got to our meeting spot and met with Laura.  We have been wanting to run with Laura for a year now so we were thrilled that she was part of Team Alex!  She made these awesome signs for Alex's chair so people could cheer her on during the race!

We wanted Alex to stay as warm as she could for as long as she could so while we got everything straight she enjoyed the warmth of Daddy's truck!

Her tires were pumped and her chair prepped!

We got her bib number....

Fastened it to her blanket, bundled her up as much as possible and she was ready to roll!  

Meet Laura!!

...and the rest of the amazing team that is Team Alex!

Laura, Rob, Patrick and Liz!

We ran with Rob in the Monument Avenue 10K and we couldn't have been happier to have him part of her first half marathon!  He's an amazing runner that comes down from Northern Virginia and we knew she was in great hands!

 Alex was happy - and ready to run!

And these awesome ladies were ready to run too!

One minute warning and Alex was thinking it would be a good time to continually pull her boot off!  We did a double check that she was ready to go...

 ..and they were OFF!

Laura sent me this great shot of Alex and the elite runners running along side of her.

We left downtown and drove to Bryant Park to see them at the half way mark.  Although it was freezing, the fall backdrop was beautiful!

Here come the elite runners....

....and here comes Team Alex!

Look at all of that enthusiasm!

...and notice the missing boot! At mile 5 it was apparent it was futile to keep putting it on!

Zach was a real super trooper getting up at the crack of dawn and freezing to support his sister - he yelled the loudest for her as she was running past us.

The ONLY bad thing was that when we drove back downtown from the half way point there was no parking anywhere.  We wound up having to park miles away and just as we were approaching the route we saw Team Alex run right by us and we weren't at the bottom of the hill to see them cross the finish line :( 

Team Alex ran 13.1 miles in 1:55:56!

Laura was supposed to run the New York Marathon last month and had to defer for an injury.  The fact that she was able and willing to run the half  pushing Alex gives just a tiny glimpse of what kind of person she is.    I know I say this every race, but I really don't have words to thank these amazing people.  Every race I feel such an incredible amount of gratitude to these athletes.  To give so much of yourself both physically and emotionally so that my girl gets to have an opportunity she otherwise would not be able to experience is so humbling and it's just so hard to articulate my gratitude.  

Zach commented to me that he thought it was really cool that people sacrifice their time to run with people like sissy and that it's really neat that people would want to do that for her.  He said he really thinks people like that are special and that he was happy Alex had friends like that.  So thank you Team Alex for making that kind of impression on Zach.

When Alex first crossed the finish line she was a bit cranky - understandably so for a few reasons, but after a few minutes she brought the smiles back and I was able to get some pics of her sporting her medal!

We love the medal she received to add to her collection :) 

So thank you Inclusive Racing, thank you Laura, Rob, Patrick and Liz.  Thank you for letting us be part of Inclusive Racing and giving us and Alex the opportunity to do something so incredible. Thank you for making such a difference with what you do, we are truly grateful.