26 June 2013

don't waste your motherhood.

I feel like the idea of don't waste your cancer is a heavy and significant one. I adore libby ryder's blog of the same title. It inspired me so much, I've even toyed and started to write an entire blog post don't waste your cystinosis, but haven't found the courage to tie up the loose ends and hit that publish button. Tricky subjects require gentle words to avoid hurting feelings and hearts. Truth is, there is SO MUCH to gather up and learn when you are going through or living with a life threatening health diagnosis. There are some lessons that can only be grasped firmly when you stare death directly in the face. By no means am I saying motherhood is the equivalent to cancer and cystinosis in terms of hardship, please don't get the wrong idea and think that! I thought it might be a fun and interesting topic to challenge myself to dive into, flipping it onto the mama hood aspect. I've wanted to record some of the little scenarios I've been indulging myself in lately with Miss S and how much more at peace I feel in the world when I do make that extra effort, go that extra mile, make that bottle of elusive fairy potion, to move that girl into smiles that light up the whole world.

There are endless beautiful things I want to show Sookie about life. That intricate ribbon of love weaving through every one of us. How it connects us all. The way it becomes that much more apparent when we approach everything with open love and we jump headfirst to forgiveness, instead of assumptions and hurt. When we reach out and give little pieces of our hearts, when we run toward pain instead of away from it, because we are all in this together.

If you've been reading for awhile here, you know (or at least I hope I've conveyed) that I view motherhood as a privilege. It is such a sacred place and journey to me. I respect it with the weight of the fact I'm technically medically speaking not even supposed to be living and breathing right now, let alone been given the immense gift of motherhood. I know motherhood means a thousand different things to a few different people, and I freaking love that. I love that we can all feed off of each other's ideas and encourage and cheer and uplift and support.

I have a few questions for God when we meet. One of them is "Why are so many outstanding and brave women aching to be mothers when others pop out kid after kid after kid, completely oblivious to how lucky they are?" Another question I would ask would be "Why are sour patch kids so amazingly delicious?" But, I digress.

There are times when the tears come fast, spilling down my cheeks. Because I am overwhelmed with everything...staying on top of my grueling medication schedule and being the kind of mom I want to be, juggling my fears, all of it. Yes, I do fall apart sometimes. I want to be everywhere at once because I do not want to have regrets.

Earlier this week at my Aunt Doe's, I told Sookie if she stood under these flowers and laughed, a tiny little fairy would jump from them, right onto her head.

Tonight as we took a bath together, she asked me to be her prince. I talked in a (very bad) low prince voice. She thought it was hysterical. It lifted my mood tremendously too.

I have started a new daily ritual. I wake up. I think, look at this gorgeous day. I've been given another one. Honestly, five days out of seven, I'm shocked I'm still alive. The enormity of it all is not lost on me one bit. I look over at Sookie and I simply study her. I soak her in. Every line of her face, every wisp of red curls, every bruise and souvenir of childhood.

Me: "Did you know you're my miracle?"
Sookie: "Yeah."

Don't waste it mommas. Don't waste any of it please. This is all so precious and thrilling and it is all right now.

25 June 2013

there is so much light for you darling girl

cousins in the sandbox

I'm so grateful for the happy June moments bursting and floating all around my heart right now. Each important and fueling on their own, but when grouped together create a super force that is driving me to fight even harder for the best of everything; my health, my family, my dreams, my future. 

And oh what a fight it is.

Memories flash as I see a gorgeously victorious 34 candle on a birthday cake celebrating the man who aches to see me smile and encourages me every single minute to chase happiness in every avenue, cousins climbing up into a treehouse with hidden charm, and down again with assistance from a poppa with a heart of solid gold, a charity golf tournament held in my honor that I am eager to make even better next year, family gatherings in our backyard as we beam with pride to be given the chance to invite loved ones over to our space for once, Sookie learning the true meaning and depth of the word cousins, how alike we truly are in our brokenness, the rush of a life worth living and the desire to make a difference worth remembering.

When you push yourself beyond what you think you can do, the universe has this robust way of meeting you a little further than halfway and boldly whispering in your ear...
"There is so much light for you darling girl, it wants you to catch it and let it dance in your hair. There is so much love trying to catch you; slow down and let it. Be brave enough to live it all out."

P.S. - I would like to put it out there into the universe that all I want for my upcoming 30th birthday is to share our story on the Ellen Degeneres show. Too big of a dream? Nah. ;)

21 June 2013

two months away from (what was once) an impossible day.

I am two months away from a day I never thought I would see!

I turn the 30 on August 19th! There are many reasons this is a significant day in my life, in addition to the obvious culturally driven ones. My head is swirling with ideas on how to best commemorate the occasion. I honestly feel like the last twenty years have been on loan. A tremendous gift of more life; more memories, more smiles, more growth, more challenges, more chances to give back. More perspective to use for good. The scope of it all brings me to my knees in gratitude. I have lost friends with Cystinosis over the years who never reached this monumental birthday, because of the complexity of the disease. It truly breaks my heart and I do ask myself often the impossible question of why am I being given so many extra chances? It is a tricky, complicated reality of living with such a rare condition with a myriad of unknowns. Everyone has such a vast scope of struggles and issues and the microscopic balance of it all can be shook and shattered in as short as a few days time.

(This photo was taken very close to the time of my diagnosis.)

I feel like my intense stubbornness has suited me well in this particular facet of my life. I am certainly hyperaware of the fact there are many other reasons I've lived this long too! ;)

One of the projects I know I will be embarking on for sure is 30 random acts of kindness. My life has definitely not been easy, but I know that it has been because of my village behind me that I am where I am today. Small gestures of paying it forward are just as integral as family members volunteering to be tested to see if they were a match to donate a kidney. Everything from those extremes and all of it in between weaves together the chapters of this story.

Celebrate we will, for life is short but sweet for certain.
Let's chat in the comments!
What did you do to celebrate your 30th? 
What do you want to do if you aren't there yet?
Have you ever done a random acts of kindness day? What types of activities were on your list?
What kinds of things would you suggest I add to my 30 random acts of kindness day?

Remember Google Friend Connect will be retired on July 1st. To stay up to date on my posts you can follow me through bloglovin' :)

20 June 2013

lessons from a 3 year old with the flu

Our girl never ceases to amaze me with the lessons she provides us, the unique ways she looks at the world, and her overall out of the box approach to everything. Yes, she is 3 so logic isn't really her best friend but she definitely marches to the music in her head, laughing every step of the way.

On Tuesday I was high on life; we had plans to look at a new (to us) car, Hanson's new album "Anthem" was released and I received confirmation that my incredible, tough as nails best friend who has been right by my side through thick and thin, is indeed coming to visit in September. (There is not enough exclamation points to properly illustrate my joy about this.) These 3 happenings mixed together were more than enough to put me on cloud nine. My car's air conditioner went out several weeks ago and it simply isn't worth it to fix. The cost to fix it in comparison to how much my little car is actually worth, it doesn't compute. Driving around in 90 degree heat makes me so sick (Many people with Cystiniosis have trouble sweating adequately which creates a situation where it is as if our internal thermostats are broken.) and being stuck on home on weekdays makes me feel like we aren't seizing the day the way we should be. Needless to say, all things considered finding a car would help tremendously with my stress levels. (Rory's too!) Hanson's new album? I adore those boys. I have for sixteen years. My Make A Wish was to meet them. I might revert back to a giddy teenager whenever they release new ear candy.

The very promising car didn't work out because the guy never texted us his address. A brutal flu hit me that afternoon around noon. Which really isn't that big of a deal when I put it in perspective. However, the next twelve hours were not so much fun. At one point my fever was so high, I felt like I was losing my mind. I'm so grateful Rory and Sookie were both feeling great and actually went on a little daddy daughter date so I could sleep. It is rare that they get to spend time alone together so that was a precious side effect of it all.

At around 5 a.m. today, it hit Sookie. As I was holding her over the toilet, her stomach lurching unnaturally, I started crying. It is one thing to be in pain yourself, but watching your child is another level entirely. She said calmly and so confidently, "It is okay momma, it will be better soon."

Yup, that is our kiddo. Cracking jokes as her head is in the toilet. "Hey look! I can see our house down there!" Singing into her "choke up bowl" (as she so affectionally started calling it.) Reminding me how lucky we are that I am the one with the life threatening incurable disease. And I'm so serious about that...writing that. I truly am glad it is me and that she is healthy. We are blessed.

We are blessed beyond our ability to comprehend.

17 June 2013

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 :)

14 June 2013

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?

12 June 2013


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! :)