hello monday: tackle the path

Hello Monday! 

Hello to a fresh start to tackle the path of what I know I need to do this summer. It sounds so elementary in my head; strive to be a better momma every day, work hard at making sacrifices to take care of myself, love like it will never hurt, forgive everyone all the time, finish my memoir. Then my ego lets the funny ways of the world get in the way. My heart says, you've got this girl. DO IT.

Hello organic sunscreen after reading this article from Food Babe.

Hello to tackling a new day with a revived intensity to live on my own terms.

Hello big handfuls of summer memories already captured and lived out; the bittersweet (meeting cousins for the first time because of a funeral), the triumphant (our 7th annual golf fundraiser and Rory's birthday all last weekend!) to the every day and simple beauty in trampoline jumping, wishes (what Miss S calls dandelions ;) at the park and a nature treasure hunt.

Hello to a simple summer hose wreath that decorates our front door. Incredibly simple and cost literally nothing to make!

Hello to my favorite summer afternoons in Great Aunt Doe Doe's backyard. I treasure conversations with this courageous lady and the wisdom she holds in her generous spirit. She has more bravery in her pinky than it has taken me nearly thirty years to acquire.

What are you saying hello to this week?

Linking up with Lisa Leonard :)

living under june

We had an unbirthday party yesterday. Cakes, candles, singing, clapping. Why? Well, life is short...and we could. I think that needs to be my new motto for decision making, no matter how big or small. Because we can. It was a welcome distraction from silly hang ups I was experiencing throughout the day. Bringing the reminder sometimes to get through obstacles you need to step outside of them for a few minutes.

When she was finally sleeping last night, (15 hours of being wide awake, running circles around this exhausted momma) I took a deep breath and rested my hand on her stomach. With every rise and fall of her abdomen I silently sifted through the last 4 years of memories. The roller coaster, the journey, the unknown, and the sweet, sweet victories. This time of year rushes in so many highly charged emotions; the first week of June is the big Cystinosis fundraiser Golf Tournament held in my honor and Rory's birthday. In addition to both of those significant dates, it was four years ago when a positive pregnancy test changed everything. Most of all, the rules. I knew I might not survive the nine months of carrying her, but honestly...I was simply ecstatic to give life. It was a privilege I did not think was part of my story. Only to find out, it would be the beginning of the most lesson laden adventure I've ever been on.

Right now I think I could easily write twenty blog posts solely about my health concerns and worries. I don't want to dwell on any of it though. I want to put my energy into what I can do now. What memories I can make today. The stories our incredible little lady concocts in her vivid imagination. The grass is greener where you water it, right?

#findthepretty

A few weeks ago I returned home with Sookie after being out of town to attend my cousin's funeral. It also happened to be two days before what would have been my sister's 23rd birthday. I felt on edge, defeated, and emotionally exhausted. Rory simply looked at me and said "You've experienced more loss than anyone ever should, therefore I think you should also experience more happiness."

Lately I'm covered in goosebumps with the ever present realization and reminders of how fragile this life truly is. This spring has been especially brutal with the amount of deaths. I've witnessed my dad embrace a dear friend with an understanding that can only be there when you are both members of a club of parents who have lost their children. I have watched my mom do the same with a strong and courageous woman who I have always thought of as an aunt.  

My dad is a very wise man; he has used his lessons and hardships in life to build a path of the utmost compassion and resilience. We were discussing this season and the questions we have all been asking ourselves, he was telling me about what a struggle it has been for him since my great uncle passed in March. Then he said something that could very well sound like an incredible cliche, but that I've attached myself to the notion of... you have to find the pretty.

Thus inspiring a new instagram project and hashtag I've wanted to share. #findthepretty I've been profoundly questioning how I am living my life, recognizing the changes I need and want to make, and what I'm doing for my legacy. #findthepretty is an encouragement to celebrate the pretty in every day, no matter what obstacles you are fighting.

The good old days are today. Happily ever after is right now. Let's lift each other up with love and embrace the beauty in our lives. Tag your instagram photos with #findthepretty I can't wait to see them and read your stories and be motivated by each other.

Let's do this! :)

storms make trees take deeper roots

Photography by Bluebird pictures

Dress by Tashi and Cataleya
Hairpiece by Lizzapooh

Challenge topic for today is something difficult about your "lot in life" and how you're working to overcome it.

Melissa Etheridge has this belief that we all chose our hardships before we are born. No matter what excruciating adventure we go through in life, she has a theory we pick it when we are elsewhere because we know that path will take us to a place where we will learn the most. She talked about this notion at length a few months ago on a Joe Rogan podcast. I listened fascinated, and forever changed. At first this idea turned my whole world upside down and inside out. Then, the more I turned it around and around, and held it close to my heart, I realized it makes sense to me.

Maybe I did choose cystinosis because I knew it would teach me so much.

I'm learning the more heartbreak you trudge through, the sweeter the happy is, the more pain you live through, the more bliss you squeeze from the joy. Chalk it up to getting closer and closer to turning 30 (I am 3 months away...and cannot wait!) and wanting to honor the memory and tremendous lives of those of my friends with cystinosis who were never able to celebrate that milestone of a birthday.

I am so lucky our girl has a laugh that gives me the courage of a lion.

10 words

Sell yourself in 10 words or less is today's challenge prompt.

This is an old picture from July 2011. I love that Sarah Dawson caught this moment between us.



Sell myself in 10 words or less? Okay...

Bold warrior (momma) spreading love, conquering odds, & living life in color.


How would you sell yourself in 10 words or less?

Happy Saturday!


xoxo,
tahnie

a moment.

Today's prompt for the blog every day in may challenge is a moment in your day. The above photo is from a few days ago. I was sitting out in the backyard with little miss S after enjoying a delicious picnic under the shade of our new trees. (Everything to do with this house is still new to me and I love it!) I felt randomly inspired to spell words with the flowers for a little learning opportunity for our girl, and a creative outlet for me. There has been so much heartbreak around people dear to me these past few months, I want to choose love every single day and remember that love does things. It moves mountains and hugs someone and cries with them when there is simply nothing else to be done. I want to continue to walk in love, even when it is uncomfortable and challenging and not always the easiest choice to go with. It is so true that whatever obstacles you are facing in life you can always choose to...throw more love at it.

xoxo,
tahnie

what i do.

A few minutes ago, I took a photo of the chicken salad and book (The Immortal Life of Henrietta Lacks) sitting on our kitchen counter. I wanted to remember how many pieces of myself were conflicted as I put away groceries and struggled with wanting to crawl up beside little miss S and snuggle her, while the rest of my responsibilities and the world simply slipped away. I went over the fact my seventeen year old self felt compelled to devour every last bite of the chicken salad, while reading through the fascinating story held within the pages. I thought about how the wife in me wants to clean the house, make R a lunch to take to work tomorrow, and create a love letter to leave for him when he gets home in a few hours, around 2 a.m. I contemplated what I tend to do at times like these, when the world feels like it is spinning madly away from me and I feel like I'm standing in the corner, holding up my "WTF?!?!?" sign. When I feel like that I eat massive amounts of sour patch kids (the new berry ones? My ultimate downfall. ;), I fall into the vortex of Counting Crows lyrics and the happy goosebumps Adam Durtiz will always and forever give me. I write and write until my words are right up against everything else and I feel capable. I dive deep into (online) retail therapy. I drink too much Diet Coke and get drunk on adrenaline, Alice Hoffman, Almost Famous, and The L Word. Somehow I will find a way to appease all these facets of myself.

Which is funny, because the prompt for today, Day 6 of Blog Every Day in May, is "If you couldn't answer with your job, how would you answer the question 'what do you do?'"

Today, like many days lately, was a day when I did a little bit of everything. I had a story party with this wild girl who makes me live harder. We had a breakfast picnic on the back patio, complete with scrambled eggs, broccoli, cheese, and hash browns. I took pills. I did dishes. I picked up clutter. I put in eye drops. I did laundry. I danced in the kitchen with her, twirling like we could change the world, together. I mailed cystinosis pens and key fobs to Maryland for a fundraiser on Saturday. I mailed many many many gLockets packages. I had a mini date with Rory outside the office, where we took a deep breath and caught each other up on the insanity of everything. I went grocery shopping. I sat in my car, enjoying my burrito while the rain poured down outside.

On any given day, I do this and more. I'm content when I'm juggling a million different things. Chaos fuels me and cements me in the now. I crave it. I take a lot of pills. I was on the board of directors of the Cystinosis Research Network for several years and as a result, I reach out and assist people in the cystinosis community. Every day I'm emailing someone to offer a hand, whether it is in the form of fundraising suggestions and/or items, advice on how to fight against muscle wasting, tips to combat the extreme nausea associated with cystagon, etc. I pride myself on showing little miss S how beautiful the world is. I want her to know that and seek it, always. I do a lot of work for our two businesses, gLockets and Appdicted. Social media accounts, promotion, customer service emails, post office runs, press releases, editing/proofreading...you name it, I do what I can. Living life alongside an entrepreneur has been such an unexpected adventure and learning lesson. I love it dearly. I write, sometimes on this blog, sometimes simple letters to Sook, sometimes for my memoir. I take words and do my best to capture this crazy beautiful life and what I want to hold tight. I vomit a lot from medication, it is part of my normal. I play "dinosaur dance class" with our girl; a game where you roar then twirl. (I think this is how I want to teach her to approach any difficulty in life. ;) I put eye drops in my eyes a lot too, the recommended dosage is every hour I'm awake (to best stay on top of the crystal damage and prevent blindness) so when we are home I set our oven timer for every 25 minutes or so to give myself the best chance of getting at least 10 doses in a day.

Oh yes! Sometimes I remember to feed the fish.

What do you do?