Monday, October 8, 2012

...three years strong...

(written yesterday)
i took a nap today because the man of the hour as you all know still wakes me up every night. i laid there trying to quiet my mind.  it was an old movie reel flapping turning and turning through the memories. 3 years ago today, i had said good bye to my oldest two babies and was en route to st. pete for a morning induction as i write this.  a mirage of feelings were rolling through my very pregnant body and i didn't know what to expect of the hours and days that lay ahead of me... it was more emotion that any human can prepare for.
he arrived.  he fought. fought hard enough for mommy to be given the chance to hold him and kiss him and to tell him to be strong.  yah...hardest words i have ever uttered.  this screaming, beautiful, pink baby boy in no way appeared sick, but oh' was he ever.  i knew the facts, so the tears poured as i thanked the lord almighty that i was given the gift of holding him. for i had been told most likely not. i watched them wheel him away in his isolette where i would not lay eyes on him for nearly 8 hours. i was livid. mama bear freaking her freak that something had gone awry. when i was finally allowed to see him that screaming, pink baby boy was no more.  in it's place was a blue, covered from head to toe in monitors, iv's, central lines, now quiet yet even more utterly beautiful baby boy.  a baby boy that at the time i didn't realize was saying quietly from his warming bed "bring it hlhs!"

paxton west BROUGHT. IT!!!!! in the 3 years since his birth, the boy has endured and survived three open heart surgeries, 3 feeding tube surgeries, multiple heart caths, multiple hospitalizations for uti's, decreased heart function and hand mouth and foot.  he did it with a fierceness to get the f out as soon as possible, with a strength i envy and with a smile that lit up that entire place.  i am so. freaking. proud to call him my son.  he is literally the epitome of strength and he is mine.

tomorrow paxton turns 3.  it feels like we have lived many lifetimes in those 3 years.  this disease does not come into a life without turning it upside down and inside out.  it crushed us, ran us over, moved forward then backed up and ran us over again, but i'll be damned if we ever gave up.  i was his strength when he couldn't fight anymore whether it be the 8th time trying to get a line in and me stomping my once ultra shy ass out to the head nurse and nixing them touching him one more solitary time because he had cried so hard and so long he couldn't cry anymore or a day where i couldn't stop the tears and he would go so far as to get his vent pulled or be d/c'd off milrinone so i could be reminded to celebrate instead of cry. we saved each other the two of us.

...kangaroo care...
it has been a freaking crazy/beautiful ride and if i was asked to trade it for anything, all the pain, and uncertainty, the uncertainty that still remains, the fear, the sadness, the suffering, all of it. my answer would be 100%, NO!
i am a changed person because of my boy. he has taught me and i believe all of you more than any book ever could.   in three seemingly long, but really blink of an eye years, he has transformed his mom and many others along the way.  if only i could do amazing things like that, but having my son do it instead trumps me anyway ; )
today, paxton goes to preschool (with the most amazing, patient, ever so watchful teacher) and he loves it!  he gets to be a big boy now "cause he's not a babyyy!" he is working on potty training, but is behind the eight ball on that for obvious reasons.  he has the vocabulary of 20 year old. in fact, the other day he told me to "zip it lock it put it in my pocket", to which i inadvertantly did because i was blown away that he could say all of that to begin with.  he looooooves his brothers something fierce.  he copies everything they do and is definitely the "scooch" of the family.  he doesn't eat much, but eats enough to not use his feeding tube.  gogurts and yogurt shakes are a staple and i was asked to please send in two every day to school so he has one for snack and lunch~ he apparently was snatching other kids if he didn't have one.  he can count to 10 missing one here and there. knows his alphabet. knows his name, age, my phone number, knows he is sick, has a boo boo and a "button" (feeding tube). still says "no hospital" if we get on I-75.  looves bubble guppies, going to target (ahem...), playing outside on his tractor and his scooter.  loves his mommy with a passion.  doesn't love swimming, but loves the beach.  loves parties and presents.  loves life.... he really, really does. it's a beautiful thing to witness.

dear sweet, brave, pax~there just really aren't words that mommy has for the love that swallows me whole over you. i have spent the majority of today in my own solitude, tears easily flowing as the journey we have traveled together plays over and over in my mind.  you have taught me to seek the good, screw the bad, relish today and fight like hell for tomorrow because we never really know how long we've got.  for all the messes you have made, the tantrums that you throw (and they are frequent), for all of the colored walls, the getting into the cleaning products (which is why i use method ones) and smearing them all over, the pooping in the bath tub, puking on mommy, waking her up every single  night 3 years after your birth, the endless gray hairs i now have but never did before you. for all the fear and the worry, the heartache and the hope, i know without a doubt how goddamn lucky we are that you were one of the lucky ones!  you made it pax.  and while there is no guarantee how long we will have you, you have given me the gift of knowing how to relish every single day I DO have.  i will always worry. my mind will always run away with itself, but i know that when i look at you, you are a true hero. mommy's hero and i am forever changed by you. every day that you see me walk through the door of your classroom and catch a glimpse of me screeching "mommyyyyyyyyy!" for all to hear, my heart overflows that you are here to do so after all you have endured!
happy third birthday to the bravest, cutest, funniest, most heroic boy i have been given the honor of raising. i hope i make you as proud as you make me every single day paxton. i hope the years keep on coming and i hope they are easy for you because you deserve easy.  i love, Love, LOVE, LOVE you.
may all your dreams come true....


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