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 22, 2015

Family Time!!

October and November were great months for family time and celebrating.  In October Aaron's mom, Aunt Barbara, Uncle Louie and our nephew Jack came to visit and as an added bonus, his cousin Dawn surprised us as well!

Aaron and his Mom  
Uncle Louie, Aunt Barbara, Dawn, myself and Aaron

Cousin Time!
My mother-in-law, Uncle Louie and Aunt Barbara are in Niagara Falls, NY, Dawn is in Buffalo and Jack is in Rochester, NY - needless to say it's a long trip and we don't get to visit nearly as much as we wish we could. 

Zach was thrilled to have some time with his cousin Jack. 

...and so were Aunt Donna and Uncle Aaron!

Alex celebrated her 14th birthday in November and since we've never been able to celebrate with them we had an early birthday party for her.

Aunt Barbara, Dawn, me, my mother-in-law Beverly and Alex

Jack, Aaron, Alex, Uncle Louie and Zach

Alex loves her crazy Uncle Lou Lou (as we loving refer to him as) - we all do!

We enjoyed some nights out by the fire pit...

...and enjoyed snuggling in the mornings...

 ...and lots of love in between!

It was an awesome 3 days and we were so sorry to see them leave - time went way too fast.

Speaking of Alex's birthday, I think she celebrated all month long!!

She had another early celebration with MeMe and Papa....

...and enjoyed more cake!

...and time with her most adoring fan.

The night before her birthday we went to my friend Sara's house (who literally has blow-ups on her lawn for E-V-E-R-Y occasion!) and she was kind enough to have a huge cake blow up out for Alex which she thought was pretty neat!

..and she had cupcakes with some of her friends and loved how loud everyone sang happy birthday to her!

On her actual birthday she celebrated with her friends at school and they made her this beautiful birthday card...

...and her wonderful teacher decorated the classroom door and the white board - she even had birthday napkins for her cupcakes :)

My friend Leslie discovered that Alex likes turtle pie - so that evening we celebrated with that!

Considering she has a feeding tube and doesn't take anything that's not blenderized by mouth, I would say she sampled enough cake, cupcakes and pie to last her for the entire year!
For Thanksgiving we had more family time and we were happy to be able to host Thanksgiving in our new home. 
Aaron's Dad and step-mom were able to come in from Rochester, and his Aunt Helen from Schenectady - we feel really blessed that they were able to make the long trip to be here with us. 
My father-in-law John, Aunt Helen, my mother-in-law Joan and Zach

The night before Thanksgiving Zach and his Grandpa were able to make memories by prepping one of the birds we were making that was going in the deep fryer.

...and Aunt Helen got to spend some quality time with her favorite "fur-nephew, Rudy!  Rudy LOVES Aunt Helen (again, we all do!)

My mom's cousin Madeline was able to come visit from Delaware and I haven't been able to spend time with her in years so I loved that she was able to be with us!

And it was nice for Aunt Helen and Madeline to visit again - they have not seen each other since Aaron and I were married  over 16 years ago!

I got to spend time with my beautiful nieces Abigail, (who was home from her first year at college at Mary Mount) and Emily.

Zach and his cousins

It wouldn't be Thanksgiving if I didn't have a picture of my dad carving the turkey.  I have a picture of him carving every single year - except one when they took a trip out of town back in 2000.

Aaron's dad and Joan...

I wish I would have taken pictures of all of the delicious cookies my mother-in-law made.  Joan, hands down, makes the most delicious homemade cookies - e.v.e.r.  I'm pretty sure the first words out of Zach's mouth were "Hi Grandma, did you bring me any chocolate chip cookies"?!? Her butterball cookies are one of my favorites!

Zach and Aunt Helen

Family Photos!

Shane, my brother-in-law with his Dad Leslie behind him, my brother Danny and my Dad

No caption needed - Alex with her Papa = happiness
Aunt Helen, my mom and Madeline
Me and my sister Dana
Emily, Shane, Dana and Abigail

All the ladies!  Madeline, Dana, Mom, Aunt Helen, Me and Alex, Emily, my sister's mother-in-law Pam, Abigail, my sister-in-law Twila and Joan
And the men!  My father-in-law John, Shane, his Dad Leslie, my brother Danny, my Dad, Aaron and Zach
I love spending time with our family - and I loved that so many of us were able to spend time together for the holiday when we typically can't.  We're grateful for the time they sacrificed to drive over 10 hours to be with us.  We are so looking forward to celebrating Christmas this week and enjoying more family time - and we will be missing all the family that we can't physically be with, but we'll be grateful for all of the quality time we just had!

Sunday, November 22, 2015

A Very Busy Weekend!

With everything Alex has had going on lately, it's about time she had a weekend of fun! 

Last weekend Alex started her weekend off with the Harvest Dance at her school.  It was for the entire school and it was Zach's first middle school party.  It was a 'drop off' party so unless you were a chaperone parents weren't invited, however, much to Zach's dismay, we stayed the entire time to be with Alex.  He may not have liked having us there, but she loved it and she loved dancing with her daddy!

Saturday morning we had to be up super early - 4AM early!  One of our most favorite past times is running with her friends with Inclusive Racing.  Last weekend was the Richmond marathon and for the third time, she was a competing runner!  Unfortunately we woke up at 4AM to her having a seizure so we were really worried about how she was going to handle the race, but thankfully she did just fine.  

Zach definitely gets the best brother award for getting up at the crack of dawn and doing it with a smile and zero complaining.

Alex had the best team.  Hampden Sydney baseball players - she was in her glory!!!

Josh (in the middle) ran with Alex two years ago and we were thrilled that he was back to run with her again with some friends.  

Bryan (on the end) who started Inclusive Racing is a Hampden-Syndey baseball alum.  These guys are amazing.  Truly hero's in our eyes.  The weekend of the race is the biggest football weekend for Hampden-Sydney and yet these guys chose to give up their Friday night and Saturday morning so that my daughter can have an incredible experience.  I am always in awe of people who give so freely of their time and energy to be a blessing to others. 

To see Alex so happy because of other people's kindness touches my heart in a way I simply cannot articulate. 

5:15AM - cold, but ready to get our race on! 

Typically an Inclusive Racing team is made up of four runners - one to push, two to guard each side of the running stroller and one to run in front of the stroller - Alex had EIGHT baseball players on her team!  She had her own entourage and it was great to see such a sea of blue Inclusive Racing shirts heading to the starting line!

She got lots of special attention and enjoyed every minute of it!

Here she is grinning with all of "her boys" as they line up at the starting line!

...and they're off!!

Last year we ran the half marathon but because of her back issues we only did the 8K this year.  It was a beautiful morning in Richmond as Aaron, Zach and I walked to the finish line.
Here she comes getting ready to cross the finish line - the FIRST Inclusive Racing Team to cross the finish line I might add!!

And here's the victorious team after they received their medals :) 

I really don't have adequate words to describe my feelings for these incredible young men.  

The smile on Alexandra's face with her medal says it all.  I said it in an e-mail to the boy's baseball coach, but with all of the sadness and tragedy's of late, it is so good to be able to witness the love and sacrifice of others still surrounding us.  These boys were the wings beneath her chair and they gave Aaron and I such a gift.

Seeing her so happy is one of the things that has us coming back year after year.

...and a post hug from her biggest fan - Zach.

Thank you to Inclusive Racing, to Bryan, to Alex's Hampden-Sydney "boys" for another incredible race.  A few said they want to come back and race with Alex again next year - I certainly plan to hold them to it!

When we got home from the race I put Alex down for a nap but there was no time for me to rest, I had a dance to get ready for!  One of our other most favorite groups is Jacob's Chance.  Jacob's Chance provides Alex the opportunity to play basketball, flag football, tennis, baseball and soccer and also provides her with great social activities.  It is an incredible group and I am so proud and honored to be on their Executive Board.  If you would have told me three years ago that Alex was going to be playing flag football I would have told you that you were out of your mind.  But she does.  And she LOVES it!!!  Last year was our first year playing flag football so when the season was wrapping up I asked when the homecoming dance was.  To date there had been no homecoming so I remedied that situation and planned An Evening Of Stars dance for the kids and it was a great success.  We opted to have the second annual dance and this year we planned a Mardi Gras themed party for the kids.  

The hall went from looking like this:

To our own little version of Bourbon Street :)

We had about 100 people and again, it was such a great night for all of the kids.

The kids get all dressed up in their suits and dresses and look so good!  Alex was tired, but she had such a good time.

I had a few things to give out on the dance floor and as usual, Alex had a great time dancing with her Daddy!

Thanks to some great volunteers from VACO, Ms. Jenny and Ms. Chelsea were on hand for some face painting.

A big thank you to Chelsea to for baking and decorating over 100 beautiful Mardi Gras themed cupcakes!!

A HUGE thank you to my great friend Leslie for volunteering her time to help me decorate and plan the dance.  I definitely could not have pulled the night off without you.  Thank you for being such a great friend and for having such a beautiful heart for these kids.  You make a difference by being you and I'm grateful for your friendship!

I would say despite waking up in a full seizure and being on the go at 4AM, a certain little girl had a pretty good time!

A big thank you also to my friend Kate for your tireless efforts to grow Jacob's Chance to include more and more programs to enrich the lives of our kids and for supporting the dance.  I cannot wait to see the center become a reality in the next few years!!

And a final thank you to her teacher Ms. Hadji for coming to the dance with her son and spending her Saturday night with us!

Between Inclusive Racing, Jacob's Chance and We Heart Harlie and Friends we are blessed BEYOND measure.  I have no idea where we would be without these great organizations helping Aaron and I give Alex the very best possible life she can have and the beautiful friendships we have made because of each and every one of their visions.