17 year transplantiversary

my heart is thumping tonight with bold and potent excitement for things to come. in the same peaks and valleys, the softer, more subdued beats are quietly celebrating everything that has already come to pass.


and that?


that feels good.


17 years ago today, i was given a second chance at life through the wonders of kidney transplantation. my momma, the saint that she is, gave me life for a second time. while cystinosis is a complex and multi-layered disease that involves so much more than the kidneys, this event is one of those days i will never forget. by no means does a transplant "fix" cystinosis, (and this is something i have lived, practically my whole life trying to explain to some people who don't quite grasp this fact), but it has allowed me to move forward through my life in terms of being able to avoid dialysis completely thus far.


i remember so vividly being that eleven year old in that pre op room, making peace with the fact my life might be ending then, during that surgery. and i remember thinking, well...if this is it, then i've lived a good life. who does that? what eleven year old has thoughts like that? 


apparently i do.


i've had several emails asking about how and where to donate to help cystinosis. i think a lot of the time i tend to sugarcoat the realities of this disease on this blog. i do not want to be a doom and gloom place, but there are some harsh realities i'm coming to terms with these last several weeks. i'm finding that balance and i'm loving all of you who have chose to follow me on this journey. my heart feels like it might burst from all of this support. there is a link right HERE to donate to the cystinosis research network if you feel so inspired. i thank you from the bottom of my heart. we are truly such a small group of people that it is difficult for me to convey. CRN is a passion of mine, i serve on the board of directors and am honored to be a part of changing lives, cultivating hope, and celebrating the now, all at the same time.

being silly today in the photo booth at the aquarium

tonight, as i think about the real battles i am up against, i simultaneously celebrate the wars i have already won. 17 years is so much more than i could have ever dreamed of with this kidney. ♥