Wednesday, January 30, 2013

the mothaload debuts in Momalode

i don't really remember when i started writing...i mean i remember the vows of love that i wrote to whoever my crush of the month was back in middle school, i's dotted with hearts to boot. but really writing...maybe high school.  i know i have always been a deep girl.  sometimes to deep i think. i had to watch my grandma, the only mom i have ever known, slowly and painfully die from leukemia right before my innocent nine year old eyes.  i think from then on i was changed forever. i miss her just as hard today as the day we lost her... she taught me how to be the mommy that i am today. even as young as i was the years that i had her are ingrained in me. she was an artist, i am a writer. she would be proud.  i remember in college writing letters to her when i thought my world was crumbling around my feet.  i realize now that the world was not in fact crumbling around my feet, and i can say i now know what that truly is. i still have those letters to her under the bed i am writing this on, a gentle reminder of time gone by.  so whether it started out with innocent love letters, onto poetry, more letters and eventually blogging i guess i have always been a pen to paper, now fingers to keyboard kind of girl.  i don't tell a person how i feel. i write it.  i don't sit over cups of coffee pondering the world, i do that when i type.  to each his own right...what i know today is those early days of pen to paper paved the way for three years ago.  three years ago when i would be challenged to write in ways i never fathomed that i would have to write.  i only knew that my world was actually crumbling around me this time and i had to find a way to continue on amongst the rubble. so i wrote. i wrote brutally, honestly, tearfully and hopefully. i look back on those writings as one of my most prized possessions. i didn't do it for anyone, it was simply the only way that i knew to save myself in those days, weeks, months and yes, years of unrelenting fight to see my son live.



as you all know...today he lives.  beautifully, powerfully, happily. i continue to chronicle his journey. our journey. its aftermath and the rebuilding of ground zero.  in the interim though i am able to travel back in time to really gauge just how far we have come.  i am blessed to be able to see through the eyes of others, my readers, my friends and my family that the writing was not for no one. it was for an entire sea of people who can relate, who can sympathize, who have traveled the same path, who continue to travel it, who are just starting it or are getting back to the basics on what matters in life.  his journey, paxtons fight, continues to inspire people today. three years later.  he is the hero, i am his vessel.


please, please stop by Momalode, a parenting blog/magazine that featured paxtons journey front and center.  hero/vessel...the journey continues. 


big, huge hugs
~j

Sunday, January 13, 2013

my griefcase...

there's thing i carry around twenty four hours a day, seven days a week. i have had it for awhile now and some days it's just there, like an extension of me and i carry on. other days, it's dragging behind me, ever so burdening in it's heaviness.  some days, like today it makes my heart stop.  that weight pressing down on my mommy heart as i watch his color change before my eyes.

it's my "griefcase".

i have to sit on it to get it to even close. it's so stuffed with old tears, worry and fear that the zipper has ripped on one side and that fear hangs out like the stuffing in my golden retrievers toy.  i've tried to unpack that damn thing, but you can't unpack when you haven't reached your final destination... we are still traveling this journey.  some days my griefcase gets lost in transit and i move along,  but most days she's right behind me that ole' ball and chain never far behind. i can fake it til i make it, but behind the smile,  every cell in my body is lined with worry.  i am sensing something is up with paxton. i don't know what... i can't name it or place it, but i am all funkadoo about him. i was getting ready to take a shower tonight and i took my hair down and noticed more grays than are acceptable for a 33 year old only 3 weeks post color.  i stopped for a moment to wonder what this secret stress i harbor is doing to my body. i guess it's not really a secret per se, but there isn't a day that goes by that i don't wonder to much, second guess this or panic about that. behind whatever i put forth, lies that.  i want to unpack so bad, but there is no final destination for us. yes we made it through his three surgeries, because he is a rock star like that...but he still has half a heart. he still has a feeding tube. he lives on antibiotics perpetually because he can't fight anything off and we have to nip it in the bud before it becomes full blown. he still turns blue. he still breathes hard. i hate it. HATE. IT. he wants to be normal and i let him, but all i can do while he's playing with other kids on the playground is mentally freak about the germs surrounding him because he can't fight things off like other kids can. what am i supposed to do though...keep him in a bubble...i can't possibly and when i see the joy he gets from others i know that is not an option. however long we have him i want him to be happy.  if there is one thing i don't doubt in all of this, it is that he is happy....
logically i know there is nothing i can do to change or alter paxtons outcome. i get this... i really do... so i try to live. you know, like he does.  happy. i worry, goddamn do i worry, but he's here now and i try to revel in that. special needs parents live polar opposite extremes, least I think so anyway... with such profound, soak up every moment gratitude and fear so thick it will suck the breath out of you.  it's one hell of a way to live, but it's the only way. so i keep stuffing more in my griefcase and standing on it to get her shut and she's ripped and worn, much like pax and i are.  it's life right. we all have that griefcase we carry around, the one that is so heavy yet kinda feels like home too because we don't remember life before it...
i don't remember life before mine...i started packing that motha the day my first son was born. little did i know then all that i would be stuffing it with.  it's a beautiful journey though. each item, moment and tear placed is like a medal of honor. my case of battle wounds, tears and victories.
which led me  to let go of the need to unpack.  this is an open ended flight and open ended is ok... who knows where you might end up...could be better than any planned destination you ever dreamt of...so far, no words ring more true.




 i don't know where i'm going, but i damn sure know where i've been...

love and hugs
~j

Monday, January 7, 2013

making wishes come true...

the house is quiet...i should really shower or eat or whatever, but i am going to write because well...it's been to long. i love to stop by, drop bombs, and peace out for weeks on end. it's good suspense, no...? one of my new years resolutions was to make more time to write and since we are on day seven, almost eight at this rate, of the new year i can see that that resolution is quickly going to hell in a hand basket.  guess there's always next year...

*******************
we did big things over the holidays.  cup runneth over things. made mad memories things.  first and foremost we celebrated a boy who struggled for three years to be here with us. who has endured hellish surgeries and recoveries to be here with us. and who did it with a grace we can all be envious of.  i still don't know where the time went, but here we are three years out, three open heart surgeries out and he is kicking ass and taking names. just today in fact, we went to the pediatricians office because he had a runny nose and come to find out he has a sinus and ear infection. coulda fooled me. kid is stoic as hell. fights like hell and won't back down. maybe that's who you become when your chest is cut open at one week old i don't know, but i can truly say he puts grown adults to shame and that my friends is worth celebrating! and celebrate we did.



thank you to Make A Wish Foundation for granting my hero his wish. those of you who visited us in the hospital over the years know that mickey mouse was our saving grace. that damn hot diggity dog song lifted him up when nothing else would and i would dance around like an idiot and his smile would creep through.  disney world was an option given those are mickeys digs and all, but because paxton hasn't yet learned to rest when he needs to we decided that was to much walking because lord knows "he's not a baby!" and won't go in a stroller or wagon. so the next best thing was "mickeys boat". two of his very favorite things.


they made it happen. and fast.  we got to go right before christmas and enjoy the ship decked to the nines.  they put the merry in christmas, i can tell you that.  and make a wish went all out on accommodations, treats, special snacks, special presents, pictures, meeting the characters and meeting others just like him.  oh' it was amazing to see the sheer joy not only on paxtons face, but his brothers who have also suffered through all of this as well.


The moment he set his eyes on the ship:


And this moment, yah, that one right there:



when i saw that smile (after lying about his age to get him on the slide, oopsie ;) and came to the realization that if he was never granted another day here on this earth that he is happy. and that's all a mom who has watched her child suffer can ask for.  in spite of his hospital memories, and let me tell you he does remember, he is still...happy.  this trip took all of that away.  yes there were tears, well just mommy's, but such happy tears. tears that for four days there was nothing but celebrating. there was no sadness, no what if's, no when do you think he will's...none of that.







and when i think back to those endless, endless days in the hospital. the tears shed, the pain inflicted, the struggle and the fight i am overwhelmed with gratitude that this time around it wasn't about what he has or what he will become. it was about letting him be a little boy, in a most magical place. a far, far cry from the confines of a hospital bed...




the make a wish party where there were other families like us brought me to tears which led dave to take away the mimosa thinking it was the champagne crying, but it was just same old me who has seen far more than she's ever wished to, sitting next to her boy who's been through more than any child should ever have to, looking around at the other children fighting fights they never asked to and so i cried.  bittersweet tears.  sad that any of it exists at all, but so happy for the children and the families surrounding us to be able to check out of sick world for awhile.



they say it's the happiest place on earth.... what do you think.....


thank you to those of you who made this possible. jaime, amanda, christina and everyone at make a wish foundation for their dedication to helping sick children and their families forget for awhile.


 for making their dreams come true and sparing nothing to make that happen. our cups runneth over!


love and hugs
~j

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