09 December 2013

Heaven When We're Home

snow in a bowl is simply marvelous
especially while in polar bear and penguin pajamas 
with a unicorn hat on your head

Life moves in big strides forward, all at once. It picks you up with giant hands underneath all your cares and dreams and everything that is important and worth the world in your quivering, learning heart. We are often forced to let go or be hauled into the future while we attempt to decide if we are truly ready or not. I don't want anything to take me anywhere while my feet are trailing behind me. I don't want to look back.

This week was smiles and nerves and chaos and calm and celebrating. One minute I'm juggling vet appointments, ballet class, laundry, and cystinosis fundraisers. The next I'm on a CT scan table, hooked up to a robotic looking instrument that pumps radioactive dye into my IV. I found myself wondering if my body would mistakenly think it was Diet Coke in a much more convenient albeit less enjoyable method of entering my bloodstream. Alas, no such luck. I had that weird feeling that my entire body was prickly and itchy and felt like I was about to pass out. Then I felt warm. And sleepy. Does anyone else have this reaction to the dye?

Right. Where was I? The next minute I'm sticking doggie pills into cheese so that he will swallow them and not spit them out. Then I'm taking Sookie to see extravagantly decorated Christmas trees being sold to benefit Primary Children's Medical Center. A place that is near and dear to our hearts. I blink and it is another day with more running and memories to be made and life to experience. Birthday parties, picnic lunches in the car on the go. Surprising Sookie with picking out our very first real tree as a family. Freezing, we finally just close our eyes, point, and conclude that is the lucky winner coming home with us to fulfill it's Christmas tree destiny. Next thing I know, we are rejoicing in the wondrous beginning of life with sweet baby Hazel's arrival. I watch Sookie's slow, gentle smile as she uses her soft gestures to soothe her new cousin. I fight back tears as I witness Rory's natural astonishing daddy skills as he holds the sleeping bundle. It was his destiny to be a father.

I'm pausing tonight to hold tight to the good stuff from last week and mentally prepare myself for this upcoming week. Endocrinologist appointment with someone I've never met before. This means educating them about Cystinosis with my very own tools I bring up my sleeve, in my brain, and swirling around my heart. Four days of the Dicken's Festival Expo where our very own gLockets will have a booth. Sookie's ballet recital, another appointment at the vet for Jack, play group, book club, ugly sweater party, solo flight to D.C. for tests at the NIH. They will check on the crystals in my eyes, look at an ultrasound of my transplanted kidney (fun fact! my old native kidneys are so small and shriveled up at this point, they are not detectable by ultrasound), see how my lungs are doing with pulmonary function tests, take oodles of more blood work, and check on my heart with an EKG and ECHOcardiogram.

Excited! Woohoo. If nothing else, it will be an adventure.

The best part? I get to see some sensational women while I'm out there. I really won't be alone at all. We're never really alone.

Song I'm head over heels in love with at this very moment in time?
Heaven When We're Home by The Wailin' Jennys.

Wishing you a fabulous week. Be brave, be honest, be bold, be silly, be kind, be you.


  1. It's snowing here in DC so dress warm :) Enjoy the happiness and hope for the best! -Iva

    1. Oh goodness, I will! It is 12 degrees in Utah right now! ;)

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