Jaron's Constants ** WARNING: Melissa, don't read this at work!

constant Fixed; not varied; unchanged; permanent; immutable. Fixed or firm in mind, purpose, affection or principle; unshaken; unmoved; as a constant friend. Certain; steady; firmly adherent; with to; as a man constant to his purpose, or to his duties.

Webster's  1828  Dictionary

Lots and lots of people love our little Jaron Matthew!  And though I don't know all the ways he's touched people's lives, I know he's had a significant impact on many.  But there are certain "constants" in his life and I've been thinking a lot about the importance of those "steady, permanent, immutable, unshaken, purposeful" people.  The way that he responds to each one is as unique as the role they play in his well-being. 

DADDY : FUN

Mohawk

Feeling Daddy's face

Jaron has always lit up when Daddy comes near him.  Even when he's been robbed of most emotions through raging seizures, you can see his eyes light up when Daddy plays with him!  He knows the way his Daddy roughs him up and he's always ready and anticipating it.  He's gone through stages of being very sensory sensitive and then Brian has to be more gentle.  But he knows when Daddy's home and you can see it in his eyes and the way he starts moving his body when Daddy is around.  Also, Daddy takes him to experience things he could never see, hear, and do on his own. Waterfalls, hikes, sand, snow, frosting, hair gel, bed forts, scratchy facial hair, video games, and his favorite, loud super hero movies!  Jaron loves to stay up late and have a movie night with his Daddy!  He lays in his lap in the dark, squirming, smiling and "talking" through the whole thing.

Behind a waterfall at Silver Falls 

AUNTIE LISSA : BFF

My big sister Melissa was there the moment Jaron was born and has been by my side through every up and, more importantly, every single down.  She is a NICU Nurse Practitioner so she has been invaluable to helping us through the horrible process of medical care that Jaron has had to go through.  Any trouble or concern, day or night, Melissa is the one I call.  She's shown us how to suction, change a g-tube, ask questions of doctor's, get more help, have courage to give him the meds or OK the procedures that scared us to death, been moral support for urgent care visits and routine hospital stays (and brought me coffee there more times than I can count), listened while I cried and told her, "I can't do this."  Oh my, this list could go on and on.

G-tube surgery recovery

But for Jaron, she is so much more.  I don't think that anyone has spent as much time holding and kissing on Jaron as Melissa has.  And he KNOWS how much she loves him!  He loves her that much too!  Jaron goes through seasons of "alertness."  We are really lucky when he is smiling but it was like winning the lottery when he started to coo (talk)!  Without fail, Jaron ALWAYS "talks" to Auntie Lissa.  I have multiple videos of Jaron "talking" to her.  I even have one at the hospital during an EEG that I called him a Turkey, because he'd been so quiet all day and then when Auntie Lissa sat down to hold him, he just wouldn't stop "oohing" to her!  This is why I call her his best friend, because every time she comes over to see him (which is often), he has to tell her all about what's going on.  Its like this intimate conversation to "catch up" with his best bud.  It is precious and I love that they have this special connection.

Telling "stories"

MOMMY : COMFORTER / GUARD

The funny thing about Jaron and I is that I have this magical ability to put him to sleep!  Of course, I'm his Mom.  But there's something so sweet and innocent and perfect about sitting down with my little Love and watching his eyes start to melt closed.  It's almost like he can't help it.  He is so comfortable snuggling in my arms that even if he wants to stay awake, he inevitably loses the battle.  If Mommy can't calm him down, chances are, we will be making a trip to the ER because its serious.  I cherish this bond, it's one of my great purposes in his life, to be his comforter!  A gift on this earth that feels like heaven!  He "talks" to me too and I know just how to tap on his chin to make him smile, but without fail, this boy likes to SLEEP most in his Mama's arms.

And as my little side-kick (he's been by my side for 3 1/2 years), I think Jaron knows I've got his back! This journey with him has brought something out of me that is fierce and maternal at the same time.  Mama Bear is no joke!  Sometimes this means I have to be the "mean one" in order to protect him and keep him healthy.  90% of the time, I have to suction down his throat and he hates that. (But I'm convinced that my "mad suctioning skills" are pretty awesome!  I've got it down.)  I have to hold him down to get his blood drawn. I have to change all his clothes and linens and wheelchair parts and surrounding walls and surfaces (while he screams bloody murder) to change a poopy diaper, aka Explosion.  I have to take him to all his therapy appointments and keep encouraging him through his "hard work."  Its kinda sad, I think I make him cry the most but I'm also his comforter and he knows that too!

Snuggling to get his first haircut

"MY HANNAH"

A little Mama at 3 years old

Jaron LOVES his big brother and sisters, they are his life!  But there's something unique about his relationship with Hannah.  I'm not sure if it's her intuitive nature, or her nurturing service, or her constant companionship, or her endless desire to meet his every need.  There's this sense of unexplainable love and trust that they share.  She has determined to be a nurse someday and she gets practice every day.  Often she hears him crying and she'll say, "It's ok, Jaron, the nurse is coming."  She always comes running to his side and knows just what he needs/wants.  She is so patient with him and calmly reassures him until he stops crying or seizing, which can take a long time.

Diving over the back of the couch to hug her baby

She loves to just hang out next to him, hold his hand, or wiggle her way under him to snuggle.  They have a deep connection that radiates when they are close.  I think a big part of their relationship is built on trust.  They somehow just truly trust each other and it is amazing to watch.  She can do things with him that he dislikes, and he tolerates her tender care more than anyone else.  Recently, I've thought about how their friendship is a lot like David and Jonathan in the Bible. "Jonathan made a covenant with David because he loved him as himself." 1 Samuel 18:3  Its like she values Jaron's life above her own, it is so self-sacrificial and pure.   She makes my heart smile every time she says, "I love Jesus the most and then Jaron!" And I'm pretty sure every time she comes close, he glances over at her and thinks, "Oh, it's my Hannah!"