What Growing Up with a Life-Threatening Disease Taught Me

Things that growing up with a chronic, life-threatening disease gave me:

Gratitude. Perspective. Faith. Resilience. Firsthand in-depth knowledge of humanity’s capacity for kindness.

My last infusion was May 26th, I'm almost 5 months into the pill treatment, and even now I am still struck by a daily moment of overwhelming gratitude. Almost 5 months where I've gotten to feel healthy, energetic, strong, NORMAL. Almost 5 months where my body functions in the way that it's supposed to, the way most people take for granted. Almost 5 months where I no longer spend huge chunks of my life stuck in bed crying uncontrollably as I struggle to breathe, to move, to think clearly, to speak.

I never viewed Gaucher Disease as a curse, nor a death sentence - despite my parents being told that I had a 50/50 chance of seeing my 10th birthday. Yes there was difficulty along the way, 2-3 hour long every 9-14 days. the up and down cycle of symptoms that left me a shell of myself for much of my time, that quite literally robbed me of every other week of my life.

Even through the worst of it I was thankful, thankful that I had something treatable, thankful that I got to feel good after infusions, thankful that I grew up surrounded by kind-hearted, selfless people who tried to fill my life with positive experiences in the face of this diagnosis, in the face of death. And now in particular I am thankful, every single day of my life.

I am thankful to feel so free and healthy. I am thankful to have the days, hours, minutes and seconds that I lived without for so many years. I am thankful for all of the lessons and wisdom these experiences have given me.

They have led me down a path of self-care, of exercising and eating to nourish and balance mind+body, of learning resilience and challenging my limitations, and of never taking my health for granted, but rather, being thankful for life itself and it’s every moment, no matter.

Today I feel blessed and healthy, and my heart is filled with gratitude. Thank you.

Love & blessings,