14 April 2014

Hello Monday: Today Is A Miracle

This post was inspired by Lisa Leonard's series, Hello Monday. I love the idea behind it all, saying hello to a fresh week with optimism, bravery, and gusto. Thanks Lisa!

I've been thinking a lot about different perspectives when it comes to living your story when a rare disease is a piece of it. Your normal is your normal...and no one else's. My health is only but a tiny facet of the entire scope of my being. I know that 10 years into one journey can, and will, look extremely different than 30 years into it all. And still? And still we are all so unique, even under the realm umbrella of living with cystinosis. I've never felt like I would be me without it. I don't loathe it. Yes, sometimes things are difficult...but that is existing on this earth. Every single human has their mountain. The funny thing is, it isn't even a mountain to me any longer. I think I'm more hopeful about the future than I have ever been. My life isn't horrible because of a lovely little flaw in my DNA; it makes me who I am.  It doesn't have to dictate anything I do (it truly doesn't.) Looking back on where I've been over the years and what I've experienced, I wouldn't change anything; health wise or otherwise. There is a tremendous peace with the current place I'm in.

If I could say one thing to anyone out there waiting for a cure...for anything, whether it is cystinosis, or cancer, or cystic fibrosis, or MS, it would be this:

It is a beautiful thing to have hope. It is a fabulous notion to believe in the future. However, I don't ever want to cling so tightly to tomorrow that I forget to cherish and embrace this exact minute. Today is a miracle, for everything it is right now.


Hello Monday and hello cute pink bow flats that literally put a bounce in my step as I chase my girl at the park.

Hello windows open letting the fresh air slither into our home, bringing new ideas for anything and everything.

Hello to realizing your story is not over. Plot twists are not only beautiful in novels, but in real life as well.

Hello to allowing yourself to be smitten with sidewalk chalk with enthusiasm as if you've never seen it before.

Hello to hopscotch with Merida.

Hello to a new challenge I started a few days ago: 100 happy days. Super simple, for 100 days share a photo of something that makes you happy. Can be anything; new shoes, a blissful moment, a quote, a yummy meal, etc.  Join me! I'm on day 3 and it is already creating an urgency of chasing down happy. I love it!

Hello to Sookie's blossoming social skills. Lately when we are at the park she approached someone new, says, "Hi! I'm Sookie, I'm 4! What's your name? Want to play?" I think I can learn how to make new friends from her. (wink)

Hello to hopping on a swing and eating an ice cream sundae bigger than your head, when the universe feels wonky. Like it did last Thursday.

What are you saying hello to this week?


  1. What a beautiful post! I'm saying hello to more time for things I love! Happy Tuesday!

  2. Every day is a blessing. Stuart A. Kaplowitz, MFT

  3. So sweet!

    My daughter likes to dress up like Merida too.

  4. I love this! And your daughter is too cute :)

    I came by to let you know I nominated you for a Liebster Award! If you don't want to do it that's totally cool, I just thought it was a fun little thing so I passed it along :) If you're interested, my post about it is right here: http://natalie-patalie.blogspot.com/2014/04/look-who-got-liebster-award.html

  5. inspiring!
    thanks for sharing

    I have been inspired by bloggers, like you to share my heart. I blog about my struggle with Huntington's disease, and would be honored if you would follow my journey.


  6. Wow. I have tears in my eyes. I, too, share a somewhat rare situation. I'm grateful and happy that I'm a strong and vibrant 40-year old with metastatic cancer. But what you opened my eyes to is merely the act of "saying hello" to happiness is even more inviting. Thank you.

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