Happy 8th Birthday, Gracie

Your name card that was taped to your incubator in the NICU.
I think it's fitting that we chose the one that read, "... pixie dust sprinkled here..."

My dear, sweet Gracelyn Marie ~

Today you turned eight.  Although time passes too quickly and I often wish there was a pause button to press so your birthdays won't come as fast, I am also relieved to bid farewell to your seventh year.  It was, in so many ways, the hardest year of your life - - so many medical complications that lead to setbacks in numerous other areas.  Sadly, you were much too sick today to even care when each of us wished you a happy birthday.  We spent what should have been a fun, celebratory day, doing breathing treatments every four hours (along with a couple for Preston and me, too), Vest treatments every six hours, giving you intermittent blow-by oxygen (for support, so you wouldn't have to work quite as hard), and doling out medicine, etc.   (Daddy has been spared thus far and actually left town this morning for a work event, so our official celebration was to be postponed anyway.)

In some ways, today was not unlike your first day of life - - you are really sick and fighting hard.  However, on your actual birth day, you were whisked away to the NICU at a different hospital and, due to my c-section, I didn't see you for another day and a half.   Today, I got to spend the day cuddling and holding you in between all the madness of our makeshift hospital. And, in the moments that you felt some relief, I was right there when you smiled, played with my hair, held my hand and signed, "I love you."   You never, ever cease to amaze me with your strength, resilience and happy, loving spirit. 

Your brother knows we are celebrating when daddy is home and you're feeling better, but he still insisted on giving you all of his favorite toys, including his treasured dinosaurs which he "wrapped" yesterday.  You smiled at him and even chuckled once as he slid another truck over to you, to which he delighted, "Look, mommy, Gracie feels better for her birthday!"  I wish that were entirely true, but you did seem to be showing a bit more sparkle at the end of the day... enough that I took you guys out back and set up some shaving cream at the table.  While you never cracked a smile and rested your head on the side of your chair, you did play intently for about twenty minutes.  After that, you sat on my lap and quietly watched Preston play.  And, even though he knows you can't actually eat cake, he was adamant that "the birthday girl needs a cake... it's her birthday toooooo-day, Mommy," so we baked you a vanilla and chocolate chip cake in the shape of a flower. 

While we are postponing our official celebration of your birthday, and though (for the most part) you've been "missing" since last Sunday night, it's not hard for me to celebrate all the wonderful things that make you you.   The list is long.  Here are some of my favorites, in no particular order...

- You love to cuddle, kiss and hug.  For the longest time daddy and I wondered if you would like to snuggle... you used to be so uncomfortable cuddling for too long... you'd get sweaty, gaggy and fall asleep.  Now, you can't get enough and have a definite expectation to cuddle with daddy from the time I start the dinner dishes until you go to bed.  You often ask for kisses by signing "kiss"... and you get an endless supply.   You also pucker your lips to ask for them (which I love because only the left side of your bottom lip sticks out) and I have to stop myself from kissing the cutest-lips-ever right off your face!  When you hug, you don't mess around - - a tight squeeze accompanied by a gentle back pat or rub.  It is the sweetest, most heart-warming thing.  I am grateful every single day that you are an affectionate child.

- You love your brother.  So much.  It warms my heart to see your face light up when you see him and I love when you sign his name when he isn't home, asking, "Where's Preston?"   You've been mesmerized by him since the first moment you saw him and you continue to be as gentle with him today as you were when he was a baby... even when he "wrestles" with you.  We have to assist you to "tackle" him back, but you definitely aren't shy about telling him "no" or pushing his hand away - - which I love.  For the most part, he easily makes you laugh and smile... more so than any other person in the world, with the exception of your daddy.

- You are silly... and it's genetic.  While I can be silly and playful, Daddy just is!  You and Preston get that from him and I am so glad. 

- You are quite the social butterfly.  Up until just a few years ago, going new places (unless they were outside) and meeting new people was awfully terrifying for you, so much so that you'd get worked up enough to make yourself sick for days.  Now, wherever we go, you make sure that you're a part of the action.  Whether in your chair, scooting on the floor, or travelling lap to lap (and requesting a new lap by lunging to the next person) you make your presence be known and "say hello" to everyone.  Your expressive language may be limited, but that doesn't stop you, in any way, from communicating with the people around you. Instead of conversation, you use touch and your keen instincts about people... you might be polite and interact with everyone, but you know who's genuine and prefer those individuals.  I really like that about you.  Good instincts are important.

- You are strong-willed.  This is something I adore about you... it means you're thinking and that you have an opinion... it is also something that frustrates me to no end!  Whether it's something you want or don't want, you make your needs be known and you will not give in easily.  Sometimes you'll relent... but only if I explain things in a first, second, third scenario.  That is, as long as what you want (or don't want) is in the line-up, you will (might) back down. 

- You delight in the simple things.  Watching the breeze tousle the leaves in trees and inspecting the fine details of every petal on a flower can occupy you longer than any toy.  You love dirt, water and anything hands-on like play-doh, finger paint, shaving cream, slime.  It's funny, too, because you used to dislike any tactile activities like that.  Now they're your absolute favorite.  You seem to love playing with everything that's scary to have near your trach!

- You are happy... and quite frankly, that amazes me.  Your days aren't easy... even your best include some sort of discomfort or pain and yet, you manage to dole out endless smiles and "I love you's" - - which also proves how incredibly resilient you are.  You defy odds every day and your spirit defines strength, bravery and resilience.  I'm constantly in awe of and inspired by these qualities you bear and wonder how someone so small and so young could be made up of such tough stuff.
Must have been all that pixie dust... amongst other powerful things. 

I love all these things - - and countless more - - about you, Gracie Girl.
Happy 8th Birthday... I hope this is your best year yet.

All my heart,
Mommy

Faces

I take lots of pictures in an effort to get one cute photo of my kids together. 
Lately it's been a difficult task due to several factors, not the least of which being that Gracie is often not clothed (indoors) and Preston is often moving at the speed of light.  So, today, as we headed around the corner with friends to enjoy our first carnival of the season (our community has several this time of year), I quickly clicked away at my two favorite faces. 
This is what I got...

LOVE this...

LOVE this, too!

And I LOVE all of these! 
I love that Preston is holding Gracie's hand.
I love that he tickled her to get her to smile.
I love that she pushed his hand away and laughed at him.
I LOVE how much they adore each other.
(I also LOVE that, once again, Gracie kept those sunglasses on for a really long time!)

At the carnival, Addie (another one of my favorite faces!), Preston and Gracie all got their faces painted for the very first time.  They waited (more patiently than the adults!) in a long line and sat super still while their masterpieces were being completed!


Gracie got a pretty heart, Addie got the "princess" artwork and Preston chose the snake.
(Note: It's April 9th and we're wearing sweatshirts in Southern California!  We even had hail yesterday!  Brrr...)

So excited about their finished products!

Bubblefest

Little pleases and impresses Gracie more than bubbles. Most kids like them, including Preston, but "like" is an understatement for Miss Gracie. So, when our friends mentioned that Bubblefest was starting at the Discovery Science Center last weekend, I knew that getting my kids there was a priority. Thankfully, little miss lovesick was able to drag herself out of bed on Sunday to enjoy a fun-filled afternoon.



I'm so thankful that my "on-it's-last-leg" camera managed to get this shot.
During the finale of the show, she signed, "happy" "more" and "bubbles" completely unprompted.



What we saw onstage...

...What the kids looked like watching

The kids in Elmo's World

Preston and Addie were excited to see Elmo, which was surprising since Preston is so unimpressed with Elmo at home!  Gracie, who still really enjoys Elmo, was completely unimpressed with him in person!  Her expression cracks me up... I think she is looking at him and wondering two things: 1) What the heck are you doing here? and 2) Why are you so big?

In the "super whippy wind tunnel" as Preston described later to John.

Gracie wheeled herself into a wind-tunnel, signed "wind" and started to roll back... She grabbed onto her wheels and cracked up.  For a kiddo who can't blink to protect her eyes, she sure does enjoy the wind!

It was such a fun day (but for the ridiculous crowd!) and there were so many interactive things that were set up for Gracie to enjoy, too.  I look forward to taking full advantage of our new membership and intend to take my girl back to the bubble show at least one more time while it's here.

Pimp My Ride



Phase One of Pimping Gracie's Ride - - her newly embroidered canopy!
Miss Thing thought she was all that and a bag of chips cruising the mall Friday!

 Because Gracie's chair is "uber custom" and has parts from various manufacturers, we were limited on our choices of colors to make it cute and girlie.  The options for her frame were either too dingy or way too neon for our liking (especially knowing we'd have to live with it for many years to come) and there are so many types of fabrics involved in her seating and canopy that coordinating colors was impossible.

Thankfully, Gracie's awesome PT, Laural, had a plan (and a kind heart, selfless spirit and a mother-in-law with an embroidery machine!) to help spruce up the canopy.   We picked up the panels at therapy last Wednesday and every single place we've been since then, I've had people come up to me and say the sweetest things about her customized canopy.  Gracie thinks it's pretty snazzy, too... she keeps pulling on the front flap and trying to look at it!  Stay tuned for Phase Two!

Lovesick

Friday was the first day of Gracie's spring break (technically a furlough day) and, aside from appointments, I kept my girl busy with a bit of shopping at the mall.  For about two hours, she wheeled herself all over, taking only a few breaks from being in control of where she went.  She loved looking around Old Navy - - I think the bright clothes, freezing cold air conditioning and rocking music that she could feel vibrating in her wheels made her happy.  She did try escaping from me a few times, which only made me smile (since we weren't crunched for time!), as I do love her strong will and desire for independence.

I must have worn her out something fierce, because she spent the better part of today just hanging out in bed with her feet propped up on the wall, no urgency to get up and be busy.  She was happy, just lazy.  Then she took a nearly three hour nap and I half expected that she'd wake up not feeling well. 
Perhaps she's fighting another bug... OR... Perrrrhaaaaaaps...
She's pining for her "sweetheart" whom she won't see again until the 11th!

My little girl is most definitely crushin' on this young man!
Just look at that expression in her eyes! 

The adorable young man in question is a first grader in Gracie's class (way to go my little cougar!) named Christopher.  (Sorry Christopher Clayton... apparently in Gracie's case, absence makes the heart wander! LOL! She will always love you, don't you worry!)
He is an absolute doll - - a sweetie pie who loves taking care of Gracie and helping her whenever and however he can.  I've seen them together on a few occasions this year... one of the cutest was when he held Gracie's hand on stage during their Christmas performance.  From the googlie eyes she's making (can you blame her..? look at how cute he is!) and the precious stories Gracie's teacher and aide tell me about their interactions together, things have clearly gotten more serious!


Let's hope that this young man comes back from break having missed my girl as much as I suspect she's already missing him!  About half the time I show her his picture, she signs his name along with "sweetheart."  Granted, she doesn't understand what that means, but she definitely understands that cute little sign is reserved just for him!  The next eight days could be very long for my lovesick girl!

(For those of you who are wondering... yes, her sweetheart also has CHARGE Syndrome.  Including the happy little couple, there are a total of six kids with CHARGE in the program.)

Atta Boy!

Our little man loves himself some sports!  Playing... watching... even on the Wii... he takes what he can get! Thanks to used sporting goods stores, we have been able to stock our garage full of all kinds of gear so that he can play whatever his heart desires at any given moment.   And, if you ask him what he's going to play when he gets bigger, he'll say, "In college, I'm going to play..." and then proceeds to list pretty much every single sport you can think of... too funny. 

In February, John and I took him bowling for the first time. We used the bumpers, of course, but he actually bowled and only used the little ramp they provide a couple of times. He used a seven pound ball and played two full games... and legitimately beat me in both!

In mid-March, the boys were out and I got a picture text from John, it was of Preston... putter in hand... and a message that read, "DUDE... he got a hole in one!" A bit later, I received a second message indicating he'd gotten another! It was his first time playing! They went twice that week, golfing both 18-hole courses, and went again this week! It's time for the real driving range now!



I'm fairly certain that a set of clubs (used, of course) are in this kiddo's future!

 
On March 1st, John took Preston's training wheels off... and this is how he did!





(They're back on now... but that's because I want them on! I'm too nervous trying to keep him safe while also keeping Gracie safe in her chair! It's just a matter of time, though, as he wants to practice with Daddy every chance he gets!)