23 December 2013

A Little Hello

Life is so big.

My past several days have been a blur of activity, heaps of love, words falling over and on top of words, planes, stories of triumph, kindness, hope, and light, airports, shuttles, visits to the National Institutes of Health, reminding myself I am capable and sometimes I don't give myself enough credit. I came home ready to celebrate a bunch of good health news! :)

I returned home Wednesday night and we were hit with a huge snowstorm Thursday. It was the perfect mixing of being reunited with my girl after 4 days away from her, all cozy and counting the many blessings in my life.

Have a happy day and catch some snowflakes on your tongue!

12 December 2013

The Shine Project And Cystinosis Research

Did you know that because Cystinosis is such an ultra rare disease, we don't receive government funding or anything like it? Better treatments, more knowledge...it is all up to us; the people living with the disease and amazing family and friends. We create our own hope. We create our own joy. We create our own future. We create our own story.

Be a part of something truly spectacular today and purchase a set of this fun and meaningful bracelet collection I designed with The Shine Project. 25% goes toward the Cystinosis Research Network. Please pass this along and share the love. ❤

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.

06 December 2013

Breathing In The Light

our sweet girl, so full of light

Yesterday afternoon I sat on the couch, listening to the first call from the 2013 Stratejoy Holiday Council, headphones in, heart on, coaxing my stresses to stay at bay for one little hour. Sookie was napping and Jack (who had a rough morning at the vet) was resting. I was smack in the middle of taking deep breaths, telling myself I was breathing in all things lovely and light and beautiful and healing, when an incoming call cut through the one I was listening along with. It was my nephrologist calling about my CT scan.

I've been incredibly nervous at this scan. I was shaking at the hospital when filling out all the paperwork. I usually don't do this anymore when it comes to anything with my health adventures. How quickly my (sometimes complicated) medical life can be the actual simplicity I long for when all of this lymphoma stuff starts to come up again. It is great how quickly you can cherish what you have when a whole new layer of obstacles hangs in the air over your head. Suddenly, eye drops and constant nausea from meds seem like a cakewalk. Because that is your normal. ;)

My thyroid looked great on the scan. The lymph nodes they were concerned about didn't look suspicious. They are not even large or swollen enough to the point they could biopsy them. This is incredible news! I started crying happy, grateful tears as soon as the call was over. No biopsy. No more immediate visits to Huntsman Cancer Institute. No more what ifs swirling in my mind on that subject. Next week I see an endocrinologist. Then on the 15th I fly to D.C. for a few days of tests at the NIH. I'm blessed. Oh so very blessed.

The past few days have been a roller coaster of emotions and this wonderful news was extremely welcome. Better yet? A scary trip to the vet for Jack (our dachshund) resulted in the best case scenario and we are so happy he is home with us, resting and on the mend. He ended up having an internal bruise that started swelling and it grew so big they can to drain it. We were concerned it was his prostate because of the location of the mass (near his behind) and his age. (Jack, I love you. I apologize for discussing the state of your prostate on the blog.) He's home, on some antibiotics and doggie steroids and resting a lot when he can sneak away from Sook. I'm home with good results and I feel like I can breathe for a few days and soak in all the good. You know how sometimes things can happen to wake you up to how thankful you are for the imperfectly perfect state of your life? Like, if anything threatens to change it or upheave it (I was worried about losing Jack and horrible results from my CT that would set in motion a whole slew of events I didn't think I could handle) you automatically long for the messes you know, because you see them in a whole new perspective? Yeah. That. ;)

04 December 2013

We Must Dare To Show Up

These past few days I'm getting better at stopping to drink in the moment and snap a photo. Capturing our sweet slice of joy mixed in with the ordinary. I've discovered when you grasp the magic and hold on for a few seconds, it transforms anything to beyond typical.

There are many changes I want to make as we close up this year and embark on the next. Showing up is my way of being held responsible with what I choose to follow. Sometimes the most difficult thing in the world is simply staying true to your authentic self. There is so much pulling you away and trying to distract you from who you really are.

Today? Today I feel good with the knowledge I can say I showed up. I showed up when Sookie wanted to go play outside in 12 degree weather because "My tummy is hot and I need to eat some snow to make it feel better." At 8 a.m. no less. (Wink.)

I showed up when my nerves were getting the better of me over worry over what is going on with our sweet dog Jack, ballet related issues we were having with Sook, and my CT scan that was this afternoon. I stress ate. Or ate stress, however you want to look at it. ;) I cleaned. I washed my hair. I vacuumed. I braided my hair in pigtail braids, because I never wear my hair like that. People are really nice to me when I wear my hair like that though. Probably because they think I am 11 years old. I blasted Christmas songs and made ornaments with our girl. Our girl who reminds me the light in this world is so much more abundant than the dark. And we must choose it. Over and over and over and over, we must choose the light. No matter how deceptive the dark can be.

So I dared to show up for mommy things and wife things and general being an adult type of things. I went to the Huntsman Cancer Institute for my CT scan and made morbid jokes with Rory in the elevator. (Oh you're dying, but LOOK AT THIS GORGEOUSLY BEAUTIFUL ELEVATOR!) The view up there was outstanding. Even if some of it was Utah smog.

Things were going great. I was hanging out horizontally waiting for them to put me through the whirring machine, mentally going over my gratitude list for that moment. Right after I thought to myself, hey at least I don't have to have an IV today... The sweet nurse gal popped in and said, We are actually going to give you the contrast and need to start an IV. Awesome.

The great part about this is that I had lightning fast results on my kidney function because they wanted to make sure it was within "normal range" (hahahaha) before they did the contrast.

The woman who did my IV was not so skilled with needles, but reminded me of the girl mouse from Cinderella. As a result, I spent the rest of the day with do the dishes and the moppin' they always keep her hoppin' going around my head.

I'm waiting on results now, but I'm okay with whatever they are. I'm in a good place and while I don't exactly know why that is, I'm going to ride it out for all it is worth.

03 December 2013

Joy Right Where You Are

This morning I was adding songs to a Christmas playlist I initially started last year. I titled it this is where you belong (at Christmas) in honor of the Hanson song. (wink) I laughed to myself as I wondered if Sookie would ever talk about remembering the songs I blasted from these years during these seasons. I imagined her telling a friend "Yes, my mom made these Christmas playlists and so many of my winter memories are tied to them. She had songs upon songs and more songs. You know the classics; Elvis, Frank Sinatra, Jackson 5, Hanson and Lady Gaga."

It feels foreign I don't have a set topic for today. Oh Blogember, I already miss you! Ha. My problem is that often when I don't have a predetermined prompt, I will babble about the most random things. For example? The other day Sookie told me I smelled like magic. She also wondered aloud on Thanksgiving, "Maybe they will have a big balloon of me in the parade?" Well of course honey girl, they should if they know what is good for ratings.

We hosted Thanksgiving at the same time celebrating our first in this house. Fabulous combination and now I know what things to do different for next time. I kid, I kid. It was a beautiful day of loved ones, yummy good, fun quote cards from Live Inspired, and goofy Thanksgiving mad libs.

Today I made extra effort to soak up the little blessings. Like a snowy morning and nowhere we absolutely needed to be. Apple cinnamon french toast. Bob Dylan Christmas songs. Sookie's insane bedhead. And our crazy Elf On The Shelf, FlowerElla, making elf angels in the flour. Tomorrow is a big CT scan to see what funky things this certain lymph node in my neck is doing. I'm a lucky lucky woman that Rory is going with me and will provide me with comedic relief.