Friday, October 30, 2015

Jumpin'

Matt was doing yard work when the kids got off the bus.  You know what that means!!






Tuesday, October 27, 2015

Wordless Wednesday

A Day at the Spa

Abby decided long ago that she wanted her birthday party to be a spa party. Now, I wasn't about to break the bank by taking eight little girls to one of those kid spas, so I set up a spa in our house.  Thanks to Matt, my sister, and my mom, we managed to soak feet, do facials, paint fingers and toes, and make homemade sugar scrub.

Here are a few pictures of my set-up...before things got crazy!








Once everyone came, we welcomed them to the spa and got them set up with a nice, warm foot soak.  I even included a few marbles to give their feet a little massage.


Then I started in on the facials while my sister took a few girls to paint nails and Matt made sugar scrub with the rest.  The girls thought the cucumbers were pretty funny!




 The facial mask I bought ended up being one of those clear peel-off masks...um...not so great...I'll just leave it at that...

I ended up grabbing my good mud mask (using mud from the Dead Sea!) for the rest of the kids.  This came off much easier!



Abby was not interested in any kind of mask whatsoever...party pooper!  I did get her to show me her pretty nails.  They look pink here, but they are purple (of course!)


The group enjoyed their snacks of popcorn, fruit, veggies, chips and salsa, and cheese and crackers.  We had a variety of spa waters:  lemon/lime, lemon, strawberry/lemon, and mandarin orange.  They loved tasting the different flavors!



Then it was time to sing Happy Birthday!  Grab the candles!  Ooooops....uh...we don't have any...mom fail.  Well, Abs, you have your choice.  Spiderman or Darth Vader?


 Darth Vader it is!  ;)



Abby's sweet friend T is SO funny!  Once the sugar kicked in, she got pretty silly!


Look at all of her sweet friends after a day at the spa!  We love these girls so much!



Kids, please just take one nice picture, and then I'll let you do a silly one!


Abby loved opening her gifts!  Some favorites were the Elsa skating rink, a wheelchair and crutches for her American Girl doll, a whole set of handmade headbands for every occasion (Aunt Amy is so crafty!), and her new comfy robe (with a matching one for her doll!)


It was a wonderful day filled with lots of laughter and noise.  I am thankful that I'm good friends with the moms of all of these girls, and that our sweet girls will get to grow up together.  Love them all!

Thursday, October 22, 2015

A Letter to My Daughter

Dear Abby,

Every year on your birthday, I write you a letter.  Each year, I wonder if next year I'll view October 22nd as "just" your birthday and not have a roller coaster of emotions.  In case you're wondering, it won't be this year. :)

Year 4 has been a big year for your, girly.  You have had 5 major surgeries in the last year:  a VEPTR attempt/bone grafts, two VEPTR insertions, a jaw distraction/gtube placement, and jaw hardwear removal.  That's enough for anyone in their whole lifetime, but that's just a year in the life of Abby.



But you know what?  This year has been HUGE for you in so many other ways, because you are not defined by your surgeries.  You "graduated" from Infants and Toddlers, started pre-k at big kid school, continue to love Young Athletes, have made leaps and bounds in eating, have wonderful friendships, have surpassed all of our expectations for physical therapy (especially with all of those surgeries!), started taking dance lessons, love to sing, dance, and perform, and...if it is possible...are sassier than ever!




Abby, never forget who you are.  You aren't the girl with that crazy-rare syndrome.  You're not the girl who has a bunch of surgeries.  You aren't the kid with all the scars.  You are Abigail Elizabeth Joy, and your name shouts the JOY that you share with everyone!  You are the daughter of the King, and you have been fearfully and wonderfully made in His image.  My prayer for you is that you will always know how loved you are.  God made you perfectly.



I love you too, Little One.  And you'll always be my sunshine, my ladybug, my hot stuff, my little lady, AND my girlfriend...no matter what Daddy says!  :)

Love, 
Momma


Wednesday, October 21, 2015

Another milestone

In just 2 short hours, my miracle will turn 5.  

Five.

FIVE!!!!!

This is another milestone to add to her journey, and it's one we haven't shared as publicly.  

There are lots of statistics about kids born with rare diseases.  Here's one that is pretty crippling if you let it be:


Yet, here we are, with a little girl full of zest for life and more joy than I could have ever imagined!

I will never forget when Caleb found this sheet (it's a Rare Disease info card published by Rare Genes) two years ago and comprehended what it meant.  He brought it to me sobbing, asking if Abby was going to die before she was five.  My answer has always and will always be that we are thankful for every second and God knows exactly how long we will have Abby.

I'm so grateful for these last five years.  I am a different person because of them, and I wouldn't change a thing.  

Abby's birthday is always a bittersweet day for me, with a touch of PTSD thrown in there.  There are so many emotions wrapped up in this day.  We are, of course, joyful that our girl is doing so well!  

But this is also the day that we received her devastating diagnosis, the day we were told she would be little more than a vegetable, the day I walked into the nicu and had to ask the nurse which one was mine because I'd seen her for only 2 seconds, the day we saw those rib Xrays and knew something was horribly wrong, the day a Fragile: Do Not Touch sign was put on my daughter's isolate because they didn't know how delicate her ribs were, the day we read the death sentence that described CCMS, the day we sobbed over the prospect of losing our little girl.  

So while Abby's birthday is most definitely something to celebrate, it is also a tough day for me.  Tomorrow is the first time I've ever had to work on her birthday, and I'm wondering if I'll be able to hold it together. I usually spend half of the day crying as the memories flood in!  

But I am SO thankful that at the end of the day, I get to come home and celebrate this precious girl's life.  Thank you, Lord, for another year!

Sunday, October 18, 2015

Fall Fun Photo Dump

We had a fun last Sunday afternoon at a local pumpkin patch!

We took a hayride down to the pumpkin patch!

When we structure it carefully, Abby can even jump in the moon bounce!  Thankfully, people are usually understanding. I've taken to just saying she has something similar to Brittle Bones Disease.  It's just easier...and the level of caution is the same!

Abby absolutely loved this cow!

They had a big blow-up slide that Caleb enjoyed!

Such an odd sheep!

I loved how these pigs were sleeping together!

The kids wanted nothing to do with the corn maze this year, and my back wasn't arguing either.  So we got some treats and called it a day!

I totally didn't even think about pumpkin pictures, but I will get them as soon as we carve them.  






Friday, October 16, 2015

52!

We now have just 52 days until our big trip!  Have I shown you Abby's adorable countdown?  I think I just posted it on Facebook, so here is our Countdown Elsa!



I've been doing some more planning and researching to make sure that we can have as much fun as possible without worrying about anything!  I've got the basic plan for each day, have noted where they sell the souvenirs we want, and am now looking with the kids to decide what they want to ride and see at each park. We are prioritizing, since there's SO much to see.

One of the special events I have booked is a Dolphins Up Close Experience at Sea World.  We will get to learn about dolphin behavior, feed them, and even learn some training signals to use with them.  Abby's favorite part is that we get we visit the dolphin nursery.

Why yes, she is now obsessed with baby dolphins!!

Here's a video of some of what we will see in our tour:



Now that our official countdown has begun, the excitement is definitely building!!!  Eeeeeek!


Wednesday, October 14, 2015

(Almost) Wordless Wednesday




Our newest additions!  #thisisserious #wedontmessaround #noflushotnovisit

Tuesday, October 13, 2015

RMH Loves Governor Hogan!

Did you know that today is Governor Hogan's last day of chemo?!  Woo hoo!

I have been SO very impressed with Hogan's transparency and willingness to turn his difficult circumstances into a way to raise awareness for cancer.  During each inpatient chemo treatment, Hogan has often been found visiting other cancer patients and sharing their stories.

Of course, the Ronald McDonald House was one of the organizations he was able to visit and promote during his cancer battle.  He has supported and loved the families these past few months, so RMH wanted to show Governor Hogan that our family loves and supports him too!


So the RMH staff decided to surprise him with a big pep rally---Hogan thought he was just comign to serve dinner!  Instead, 50+ RMH residents, Ravens cheerleaders, the Oriole Bird, and some of us "lifers" greeted him with noise makers, cheers, and smiles.


Here's an article about the surprise!  The staff pulled it off and Hogan was totally surprised and grateful.

Afterward, we got to meet Governor Hogan and get pictures with him.  Abby was less than cooperative, but whatever.  It is still a cool picture! 


Even Flat Caleb (a social studies project where "Flat" versions of each student gets sent around the world to learn about geography) got in on the action!


After eating a delicious dinner from Bertucci's, we visited with some of our wonderful RMH friends (nobody gets you like an RMH friend--you can talk about classroom modifications, acceptance, and surgeries without feeling like a total weirdo!). 


Then, of course, Caleb had to hang out with the Ravens cheerleaders for a while.  He LOVES the cheerleaders and always has!  They really do a ton for the House.


Turns out, Flat Caleb is a ladies' man!

The kids went with some of their friends to activity hour and painted stained glass fall decorations.  Although they begged me to just stay at RMH that night (I'm pretty sure they think we have a permanent residence there...), we left around 7:30 to head on home.

This evening was just one of many of the wonderful experiences we have had with our RMH family.  We are so grateful to be part of a wonderful organization.  It truly is The House That Love Built!

RMH loves Governor Hogan!!