01 August 2013

Heart Map

My heart as a map, would look something like the following: a mess of green and blue and brown and life igniting reds and oranges. Conflicting colors and emotions, all swirling together as my chapters unfold. One thing pulling me forward as something else catches my eye or attention and I veer in an entirely new direction on a whim of nostalgia, chasing after a pipe dream as fast as my breath can carry me. July is notorious to me for being a month of the unbelievable. This year has been no different.

A few weeks ago, I attended the Cystinosis Research Network Family Conference in Washington D.C. with Sookie by my side. Okay, it was more like Sookie running circles and circles around me. It was a new adventure as this was my first conference with her, without the awesome, superman help of Rory. Oh...boy. Let's simply say girlfriend was homesick and missed daddy tremendously.

On the bright side, it is sacred when people look at you and know your battles intimately; as much as they can without being you. There are precious moments from that trip I want to embrace and keep under glass. I spoke with parents who have never met anyone else with Cystinosis and they asked me questions about how I stay positive and what they can do to help their kids live their best life. The honest truth is, I'm still trying to figure it all out myself.

There were days of jargon filled with such medically charged terms as cystine, nephrologist, rickets, cystaran, proton pump inhibitors, carnitine, immunosuppresants, kidney transplant, cystagon, being nominated as a "Hero Among Us" (Thank you Rachel!) and learning more about what it would entail if I volunteer for an upcoming study for the effectiveness of growth hormone injections in delaying muscle wasting. Moments came up on me when I felt the weight of my breath caught in my throat as I saw Sookie in the company of people who have been such a substantial support in my life over the years. There is definitely an invisible line connecting us all and I hope to learn from others who are on this path of life with cystinosis.

When we arrived home it felt a little bizarre to be thrust right back into the world of an exhausted momma with laundry, the simple beauty of toddler watercolor paintings, grilled cheeses, alarms going off to do my eye drops, tantrums over getting curly red hair washed, Miss S refusing to wear clothes in the backyard, games of dinosaurs and fairies, and dance parties in the kitchen. For a week or so I felt like I had one foot in each of these different worlds so to speak, finding that balance between the two lands is a challenge I'm embracing...and using to make myself better with each new day.

When you are a witness to someone's life only on the outside, please have a kind heart and realize the stuff they see on the inside (that might be invisible to everyone else) is what propels their big life decisions.

Jumping on hotel beds. She is an angel who is a blur of color. 

Sarah (who is living with cystinosis) painting Sookie's toenails. Such a sweet moment that made me tear up!

Three of my cystinosis sisters who encourage and motivate me daily!

Wonder woman helping me water the tomatoes. :)


  1. this was beautifully written. thanks for sharing. best of luck to you while you continue on this journey. (stopping over from bloglovin)


  2. What an amazing experience! I love that parents with cystinosis ask you for advice on how to encourage their children. That says a lot about who you are, although I agree, and can see why you might feel like you don't know what to say, because you're still trying to work it out for yourself. :)