My PURA Gene Family – In Poetry
I’m very excited to introduce you to a fellow PURA mom. This is Sarah, mom of the adorable Audrey and Alvie. Here is her reflection of our get together in May.
I am at the PURA Conference in Connecticut.
I am here.
I am here for you but I am also here for me.
I am here to breathe. To take breaths. I n a n d o u t.
Instead of just holding in. Holding everything in. Waiting for days to take a breath. Waiting for a space in between all of the things that make us busy. That make us preoccupied.
That make us tired. That make us stressed.
I am here to learn to take breaths everyday.
I am here to learn about you. The you that is PURa.
I am here to learn about me. The me that is a PURa mom. That shares so much with these women. The weight and the light.
I am here to share you. Share your milestones and inchstones and the waiting in between. Your symptoms and your strengths.
I am here to share me. My fears and joys. Where I find strength. Where I find hope.
I am here to fight for you. To find a way forward.
To plant the seeds that will grow into research that will bear fruit of treatments or medicines that will be harvested for a cure.
I am here to listen.
I am here to talk.
I am here to someday hear you talk.
I am here to be in the moment, to smile and laugh, to
hug and cry, to eat and drink, to breathe in and out, to live.
I am here to create a better future for you.
I am here to have a better today for me.
–Sarah Bloom Anderson–
Please consider sharing this post as there may be another Rare Disease mom out there who needs to hear these words.