04 April 2012

on my heart

i am reminded daily of the importance of attitude. that, no matter what diagnosis you have been given in life, the power of your demeanor and the force behind your way of coping is worth so much.
so much more than whatever unfriendly forces your body is up against.

i am also reminded lately that the more i challenge myself, whether it be in facets of motherhood, personal strength, being a better partner to rory, emotional hurdles, physical obstacles, or something as simple as being more intentional with how i spend my time...the more i push myself, the more i learn. consequently, sometimes i urge myself forward to the extreme and have to take a step back.

after all,
i am 28.5 and still learning.

and that is okay.
it is awesome even.
yes that .5 is important.
because lately? well, lately there have been a slew of articles about cystinosis spreading word that everyone with the disorder "succumbs" by the age of 40.
this is not true and it really, truly is hurting many adults with the condition.
there are people in our community hoping to adopt. these claims are tainting their journey to adopt.
because agencies look at these articles and make assumptions based on the whole "not going to make it past 40" rhetoric.
because cystinosis is so rare, using statistics is tricky, messy, complicated. it never really paints the full picture.
i have a lot to say about this, the media, using dire outcomes to boost awareness...and so on and so forth. there are many problems with it. there are better ways.
i'll share more about this later. ;)

(my erin condren planner, oh I love it so!)

a few days ago, i coated those last final lashes with mascara as sook came running in my bedroom, coasting around the corner to my bathroom. (she had been outside with glamma.) her steps were infused with a special kind of enthusiasm. "mommy! mommy! flower! you!" she crashed into my legs holding a dandelion up to my face, as far as she could reach. just. for. me.

& this is a moment of my life with her i want to grasp tight, but not so quickly that it sifts right through the slats in my fingers. i want to be able to hold onto it long enough to savor it, to make its mark on the timeline of our time together side by side, but not too long that i lose it before i am ever able to truly capture it.

my ever present run myself ragged until i am completely drained of all energy approach to life has only been amped to the ten fold lately. i force myself to go go go go for as long as i possibly can, but then i have days when fatigue just takes over. it can be crazy. i like to find the hidden trinkets in this up and down dance. how cozy our bed is, how sookie reverts to infancy while asleep, the solace that exists in the quiet, the way my mind still races when my body needs her downtime.

monday was a busy day. we were everywhere. maid of honor dress fitting for me, easter dress hunt for our girl. nordstrom rack. carters. pei wei for lunch. david's bridal. zurchers. (because sookie couldn't exist another day without rubber ducks wearing bunny ears. of course!) petsmart (because we can't get a cat right now and little miss needed her kitty fix.) our favorite mall with h&m, gymboree, naartjie.

yesterday was a zombie momma day. oh boy. meds were conspiring against me in full force and i was functioning on about 4 hours of sleep. those days aren't so fun, but the lessons i get out of them motivate me to be better, stronger, and live bigger. it all evens out i think! ;)

tonight meds were kicking my behind and as i snuggled with our girl (she was asleep and rory was working late because we went as a family to see the easter bunny during the day!) in bed, i thought...how can i complain? i have red sour patch kids, salt & vinegar chips, and the night circus (have any of you read that book? wow!) it's all good.

hope your week is all good!


  1. SO.. I just read your about me page, and I fell in love with your story and your precious little girl. Your story is such an inspiration, and a wonderful blessing to others about defying the odds. God has big and great things ahead for you!!


  2. I can see why you'd be upset by those articles with incorrect/biased information. I would be too, and the point about it harming peoples' chances of adopting makes sense, and is definitely an issue. Looking forward to seeing what more you have to say about this topic. :)

    Also, I love your planner. I see Erin Condren ones everywhere at the moment, and everytime I see one I want one, but I think the dates/holidays/calendars are geared towards the US, so would be rather confusing for me. Booooo. :(

  3. What a beautiful blessing you have been given! I'm a new follower from Follow Me Wednesday. I feel like we have a few things in common, so I"m excited to be following your blog now! I have twins (miracle they are here!), and one was diagnosed with severe Autism in Jan. 2011. I blog about it on my new blog- would love to have you check it out!

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