21 September 2012

somewhere over the rainbow

i get really happy when i'm blessed with sharing in the sacred moments of watching sookie fall asleep. there is something so other worldly about it. watching the calm envelop a little being who is high spirited and strong willed every single moment when she is awake. i can't help but feel the magic of it all, witnessing the peace take over her curious soul is simply divine.

kenley's 15th birthday party

last week was things around here are pure and utter insanity. the only way to live, right? rory has been working non-stop the past several weeks; 14 to 16 hour days, 7 days a week, building two new apps that will be in the app store soon. (i.am.so.thrilled to share them. really his best yet!!) how did i get so lucky to live life alongside a creative genius? also getting all of his other apps ready for the launch of the iphone 5 and the new iOS 6. he was also out of town for 5 whole days and of course, i came down with some insane virus or something the day after he left. i'm still battling it and not quite sure what is going on, so there is blood work and more doctor appointments and lots of prayers my kidney is working!

reunited with daddy after his trip

there have been two deaths in our cystinosis family in the past week. two that i know of, of course there are more, but it never stings any less. a 42 year old man who was indeed, a true pioneer in the scope of living with this, and a 10 year old little girl. her story so similar to my own, that i could not finish the article on her sweet life because i was shaking uncontrollably. it is never easy to hear this kind of news and the span in between their ages is not lost on me...cystinosis is so unpredictable and you truly never know what will happen.

so we bend and sway and shift and adapt. there is so incredibly much i want to teach sookie. so much i want to give her. so much i want to show her. it can be horribly hard when i literally do not have the energy to get out of bed. it is easy for me to get down on myself on those days...i just crave to make every day of her life magical and when i can't take her on adventures, it hurts.

she's obsessed with momma's shoes

but i know deep down, in my bones and in my heart of hearts; i'm an amazing mother. i ache to show her how fantastic the world is, that every day holds such power of grace and new beginnings, how fabulous life is, that telling someone "i'm loving you" can be so much more powerful than the norm of "i love you". that organic veggies are superfood for your mind, body, and spirit, but also that sometimes it is too much fun to have ice cream and rainbow nerds for breakfast. that choosing joy is not always easy, but the power is always within reach.


  1. I know you probably hear this all the time, but you are such an inspiration! today's post really helped me take my eyes off of me. you reminded me that i need to put things back in perspective...thanks so much!

  2. Hi! I'm visiting from SITS! Your blog is absolutely beautiful! My mother was diagnosed with amyloidosis(unfortunately no one had ever heard of it). Thank you for sharing your story, because knowledge is power! I do believe if we had known what she had, we could have been able to fight against it! May more people share their stories, in order to help others! Thanks again! Call you blessed!

  3. Seriously so glad you tweeted this to me. I'm pulling for you and your adorable family! I mean..her hair! Come ON...redheads gotta stick together, right? :)



  4. I know you most likely hear this constantly, however you are such a motivation! today's post truly helped me take my eyes off of me.
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