Sunday, April 30, 2017

Evanna is [T H R E E]

I’m generally good at keeping my emotions in check and remain level headed.... but then something will trigger and I become this big blubbering mess unable to stop the tears from flowing. Sometimes it tears of happiness… but other times it tears of sadness too. Despite the small level of fear Nick and I live with in regards to Evanna and her health, I'm happy to say that -- 

Evanna – you are officially T H R E E years old!

Another absolutely amazing milestone… and I’m almost having a hard time wrapping my head around it! You have such a personality right now, and it I could sum it up in just a few words -- they would be: calm… yet feisty, content… yet strong-willed, and easygoing… yet determined. It’s crazy that you can be one thing and then another, but allow me to explain:

CALM – Despite hospital admissions becoming shorter and further in-between (such an amazing accomplishment in its own accord), we continue to get tons of compliments on your overall “calm demeanor” and medical staff are always so surprised at well-behaved you remain while getting accessed or going through a procedure. Blood draws are starting to get a bit harder as you get older, but you still take it like a champ!

FEISTY – let’s just say that you would not be here today if it weren’t for this quality. You are one fierce little fighter, who continues to knock one curve ball after the next out of the park and almost make it look a little easy. There's a reason I often use the phrase #EvannaStrong in my updates. 

CONTENT – whether it’s playing for hours and hours by yourself or simply satisfied to sit and watch movies on your tablet… you my dear, are just a dream. While you've started to realize there's a world outside our 4 walls, you're the happiest at home playing with your favorite familiar toys with just mommy or daddy (or one of the nurses) within arms reach.

STRONG-WILLED – while this is a great quality, it sometimes makes certain tasks harder than it needs to be. We definitely see this come out the most during occupational therapy (but if we're going to be honest -- feeding therpay, physical and speech). We are trying so hard to expand your world, but no matter how hard we try, you almost shut down and not entertain new exercises and toys. You know what you like, and nothing else matters! While I hope you never loose this quality, I do hope that as you start to understand the benefit of these activities and be a little more open-minded to try new things. xo

EASYGOING – it’s amazing that despite everything you go through, how practically unphased by it all you remain. I do sometimes wonder if this will be something that will change as you get older, but I still feel like as you begin to comprehend more and more, you’ll still remain somewhat easygoing and continue to go with the flow as we’ve always done so in the past. You've been handed a rough set of cards, but continue to take it all in stride -- I couldn't be more prouder to be your mom than I already am!

DETERMINED – when there's something you want, you won't stop til you get it. Whether it's trying to gain our attention, play with a certain toy, watch a movie, or dictate how a medical task is completed. While you're very good at getting your nightly trach care done, lying perfectly still for ECHO's or receive breathing treatments (ie. that we did to treat that horrible cold that landed us in PICU last October) -- it's still done on your terms. You'll behave wonderfully for not so pleasant medical procedures, but only when it's done under favorable conditions... ie. you get to watch a move on the tablet. But hey, we'll take what we can get, and are happy to do whatever it takes to keep you happy. You endure more than most 3 year olds do, but take all those expectations that have thrusted upon you with so much grace and dignity -- and couldn't be more proud and honored to call you ours.  

 ////// things I want to remember ---
˔ you always wake up so incredibly happy and excited, it's infectious - wish I was that excited to wake up in the morning lol.
˔ despite your current lack of speech, you definitely know how to tell us what you want or express when you're either happy or upset.
˔ you do this cute little happy bounce when we've figured out what you want and we comply.
˔ brushing our hands aside is generally how you tell us no - but it's so adorable nonetheless.
˔ you get so excited when we pack up and are getting ready to take you out, and when we pull into the garage arriving home.
˔ your favorite movies currently consist of Frozen (still!), Monsters Inc (probably your #1 right now), Lilo & Stitch, Finding Nemo, Tangled, and Lion King if you're in the mood. It's really hard to "get you onto new movies", but I keep trying in an effort to save our sanity.
˔ while you're becoming less reliant on soothers, you always have "a favorite", and it always seems to change monthly lol.
˔ the "if you're happy and you know it" game is your favorite thing to do with your dad.
˔ I always gets asked if you tug or pull on your vent tubing, but the most you ever do is pick up and move the tubing if it gets in the way of your playing. It's kind of funny to witness.
˔ still doesn't happen very often, but once in awhile, you'll finally give in and give me a quick cuddle. Just a few days ago, your dad figured out that if he uses a blanket as a pillow (as he doesn't have boobs), you'll cuddle with him for a few minutes too.
˔ you absolutely love getting up on my lap and insist we play "peek-a-boo". you've even begun to dictate when I should cover my eyes, or uncover them to say "peek-a-boo".

Right now, things are GOOD. Close to perfect that we haven’t experienced in quite some time (which I would pin point to the summer after you were born). We’re essentially able to live “season to season” right now, and it’s a marvelous feeling to say the least! We’re very busy, but enjoying a lot of normalcy lately – and the future is starting to look very bright. We’re gaining some real momentum, and the flow of good news about your health right now has us feeling “cautiously optimistic”. I still have moments where I grow afraid of when this "period" will end, but I try my best to quickly shake those feelings away and enjoy the here and now while we can.

You continue to be our greatest blessing and life lesson… all rolled into one really cute package, and we love you so very much! 

[More pictures of Evanna's "Strawberry Shortcake" themed birthday party will be posted when I do my next update in a week or two]

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