bring your light

have the best christmas ever. one filled with light. the kind that shines from within.

and then there was you

(february 2011, holga 135, film)

my breath caught in my throat. i paused for so long, wondering how this moment was left in one of my i-photo albums, never uploaded here or anywhere else, taken 5 months before you parted from this world. such treasures buried in the thousands of pictures taken of you.

i especially love this one buddy. i wonder what had caught your attention.

conversations with Baba

E: "I was just really crying yesterday"

Baba: "yea... when you were at the bus?"

E: "No, I just felt about mama. I just felt about mama in my heart... and in my life".

(photos by G)

i learned this weekend something i have always known, i think since the first time i saw E's face staring back at me from a tiny photo through this very computer: my daughter has immense, immeasurable power. the kind of power that transforms hearts. the kind of power that reaches down into your soul and challenges you to be a better version of yourself, that constantly asks you to look in the mirror and question how you see yourself, the world, and the people around you. i learned that in the face of unexpected change she might worry for a moment but will quickly recover and brush off the setback, that without fail, she will see the silver lining and rarely if ever even recognizes the clouds. she is a natural and exuberant smiler. and, apparently THE LIFE OF THE PARTY. that she has to be dragged off a dance floor, literally :) sadly, i think she stole the spotlight from the bride. that comes as no surprise to me, though. the girl has got a natural charisma.

this power within her.

you might think it's the chair. initially, that grabs your eye, sure. but then you realize that's not it at all. it's HER. it's her spirit, it's the life within her. it's this magic she has and bam she is weaving it all over you. you will be spellbound and speechless and incapable of not falling in love. i am not speaking only as her mom- i see it everywhere we go.

and part of the beauty of that power is that it is rooted entirely in unconditional love. the girl is a giver, through and through. her goal is to smile and she wants you smiling with her. or giggling. you choose. she'll take either.

rooted

it is killing me how many words there are here inside of me. i am bursting with all this... stuff- so much stuff i want to write about, but most of it is just us, you know? our daily day to day. like, for instance, breakfast. E looks at me this morning and says, "mama this is DELICIOUS. you should really try it". i mean, you would think it was her first time eating my scrambled eggs. she followed it with a dramatic "mmmm, mmmmm" and a belly rub. where do they come up with this? or last night, at dinner, when she leaned into me, hugging my arm between bites, and murmured in a soft voice, "i just love you so much". out of the blue proclamations of her devotion while the chopsticks are forcing an unusually large piece of sushi into my mouth. it was all i could do to keep from choking on that sucker. or tonight. after her bath, as she was sitting in my lap, and picked up the tiny cross that i (on a whim after a year shelving this piece of jewelry) decided to wear today as she makes note: "this is like a T". which opened up our first in depth conversation about God. but how did she know that this cross was linked to Christ? because i certainly have (failed?) neglected teaching her about Jesus (except maybe at Christmas). and i can count on one hand how many times we've been to mass since last November. anyway, she picks the cross up, holding it in her little hand and says, "this is for baby Jesus, he comes every December".

Me: "well, we celebrate his birth every December, that is true. but do you know about this cross? what it means?"
E: (shakes her head no)
Me: "this cross is where Jesus died. Jesus died on a cross to help the whole world"
E: "ohhhh. he died? he isn't here?"
Me: "God lives inside your heart. and many people believe that Jesus came directly from God, that he was God living in this world, with us. but yes, he died, and then he went to heaven to be with God again".
E: "why is God close to our hearts?" (pats her chest, this is a conversation we've had before).
Me: (long pause) "i think because God made us sweet pea. we are made by God, so God lives inside of us, very close to us"..... "actually, maybe this will make more sense- God is love E. and love comes from inside you, from your heart, does that make sense?"
E: (hugging me tight and closing her eyes, nodding yes)

truth is, i struggle with my faith. E coming into my our lives has shattered the foundation of what i believe in and what a blessing that is! the roots of my spirituality still have their hold, but she's dug beneath them, loosened their grip and dirtied her hands bringing the soil of her own truth. she has truly rocked my world, made me question the core of my life values from the moment she was placed in my arms. the world - my world- her world- turned on its axis in that moment. and since then, we've been navigating beautiful, foreign ground- merging and paving the paths of a new foundation. god's face is not the same as it was before the advent of this family . it has been transformed, molded, reshaped by each of us.

and G! chin to my chest, hand on my heart- i was in this and "technically" adopted E as a single. for that matter, G and i have yet to make ourselves official- longest engagement ever, right? i digress. what i was going to say is- i live every minute of my day in absolute and complete AWE of single parents. i COULD do it. i CAN do it. but i am infinitely happier that i am not doing this as a single. some might say "well... you are parenting a child with very complex medical needs..." i will give you that. yes, it's more work, it takes more time, more resources, and damn- 3 heads (cuz hers by far functions better than mom and dad's combined), 6 hands, 4 legs (when 2 are not to full capacity) are so much better than what E and i would be accomplishing just the 2 of us. and not just accomplishing. i mean, we are thriving as a family. and not because we have a lick of savings, or any retirement tucked away (god don't i WISH), but because we have an infinite BANK of balance, patience, love, happiness, and shit- we just make an incredible team the 3 of us.

in a nutshell, i'd be up a creek without G. he's my rock. i beat him up way too often so it's a good thing he's made of stone. yes, i still throw fits and yell at the universe for the frustrations that come along every.single.day. they are numerous and we live on the edge financially. life is not easy, but life is so freaking good. for all of my complaining, i don't have a damn thing to really complain about.

except maybe like, you know, the politics of work. and my stupid heart arrhythmia. okay and that one fool at the grocery store that gave me the evil eye when he saw me getting my purse out of the car- (i'd forgotten it when we were shopping). i was parked, naturally, in a handi-abled spot. all he saw was an abled person get her purse, and not the family i'd left behind inside the store. meh.

most everything i can dust off. get up the next day and start fresh.

if there is one thing i have learned in this family, that i believe G taught me (and once said to me)- love really is organic. it takes time to grow. roots that were once shallow tendrils have now formed a stronger hold in the compost of our hearts. and honestly, for me, though i knew when i first saw E's face that i loved her, i didn't know what that meant- to love her, until now. and i won't know what it means to love her again, until tomorrow. because everyday, just as it is with G, i learn that love, or discover it, over and over, as those roots flourish and multiply- deeper and deeper, ever more a part of me, a part of us.

our weekend

(with her most favorite teacher ever (pre-K), Ms.S- dinner out at a local pizza dive)

(her "how to train your dragon" pose- she conquered 2 stunts she had never tried, now for another... )

I have no idea who set up this tiny little play area downtown, but it seems each activity was especially designed to work your core strength and balance. She was intimidated at first, even sitting on that last "wheel", but soon realized she is so much stronger than she realizes. Interesting that climbing up that precarious (wiggly) "slide" she conquered and did twice, but she only lasted a few seconds sitting and turning - guess she's a bit like me and doesn't enjoy getting dizzy! Hanging? Heh. No brainer. That kid has arms of steel I tell you.

Of course, the bestest part of our weekend was dinner out with Ms. S and M (ha! maybe should have reversed that), 2 of her most cherished teachers from her first elementary school. You would have thought we'd taken her to Disney for the first time- and that's what I love so much about our girl. She wouldn't blink an eye at Disney. For her, it's all about the people that mean the most to her. THAT'S what rocks her world.

that's the privacy

here is the note i found waiting for me when i came downstairs after my shower... (Mondays's and Thursdays are my days to "sleep in").

"E told me this morning she had not finished her drawing from yesterday. She drew a red arm, showing me the wrist and elbow, then a green heart and 2 green circles. She patted at the circles and said, 'That's the privacy' ".

Days that start like this are THE BEST.

happy halloween!

and that is what she said at every single door! what a difference a year makes... our first year (2009), she just came along for the ride... she was clueless but had fun with her cousins. 2nd year was right here in our neighborhood and she looked on in fascination without saying a word, but freely accepted the candy sitting in the wagon with Ransom. this year? we could barely keep up with her as she whizzed around in her chair, eager to get from one house to the next and exclaim: "happy halloween!" every time a door was opened to her :) such a sweetie. mom was sad she forgot to put on her pink collar and bell darn it!

was such a great night. can't wait to see what next year brings. and i have to say, the white ears and white tail were a hit!

eight

today you would have turned 8. and some days, my heart aches in its deepest recesses, in places i didn't know existed, missing you. who knew a dog could be this much a part of your life, a true and best friend... a brother of your soul. i wish my hands could find your ears again and my lips that soft place on your cheek. i miss our hugs Mister Man. i thought we would celebrate this day together, funny hats and all.

i love you from where i am to who you are...
(everything to me)

damn it i am cute. don't fight it.

stand in the place where you are

i am certain there is nothing in the world that compares to seeing your daughter truly stand for the first time. most parents have video and photos of those first moments their child takes their first steps or toddles their way along a coffee table for support. E is almost 6 years old and i can tell you that there is nothing like the feeling of being beside her, seeing her standing for the first time. and realizing how tall she actually is, where her head comes up to me, just barely above my hip, by the way- (giving her an inch for the stander, of course)... to hold her hand with her right there next to me, no wheels to keep us at arms length. it was all i could do to keep myself from bursting into those happy sobs. not because i need her upright or want her to be any different than exactly who she is, as she is. only because it made us both exceedingly glad. only because of the possibilities it could open up for her. only because of the necessity of standing and being out of a sitting position for her heath. what this could do for her hips, her back, her heart, her joints. and for her love of the KITCHEN! :)

you should have seen her face when she got a look at herself in the full length mirror. priceless. PRICELESS. these are the best days in therapy. the very best.

us lately

(pentax k1000, kodak max 400, film)

all before mom got sick, that is!
hope you all have had a great week, here's to hoping
the weekend brings some healing my way!

a chance meeting

This morning we decided to go for a walk since the weather is absolutely beautiful. Not a cloud in the sky, breezy, and 80 degrees. We were just coming out of our cul-de-sac when one of our neighbors came running out of her house, waving hello and saying "Oh can you wait one minute I have something for you I've been meaning to give you for almost a year!"... I knew. I just knew. I was fighting the tears.

She came out with a small envelope. 2 photographs. I remembered she had taken pictures of us at Halloween last year, just 3.5 weeks after Ransom's official diagnosis. She had the only photograph of the four of us together. I had completely forgotten. I thanked her over and over, a blubbering idiot. She asked for my email so she could send them to me.

He was such an old soul, my boy. That is the real difference between Hiro and Ransom. I don't know why he was skittish, what happened to him that caused that, or what was in his genetic makeup to cause that- but I look at his eyes and I see it, and I remember it from our time together. His quiet reserve, his rock solid shoulders that carried me- and still do.

Today marks 3 months since we said good-bye to this hero. October 8th marks a year since he was diagnosed with cancer. What a brave little man you were Mister. I can't wait for that day we meet again.

Until then. Until then.

E: "mama... I wanna marry YOU"

Me: "that is so sweet E. but we can't get married, silly goose! we
will always love each other and we will always be mama and daughter"

E: "well, I can help you get married"

Me: "I would really like if you helped me get married sweet pea.
What will I wear?"

E: "orange pants. because you like orange fanta.
and a light pink shirt. do you like light pink mama?"

Me: "i do like pink, it reminds me of MY mama.
what will you wear?"

E: "the same one, just like you mama"

Me: "will you be right next to me when I marry Baba?"

E: "that's too many people mama. i wanna marry you".

sigh. girl wants what the girl wants.