April 4, 2018

Happy 12th year to me.

Yet another year as part robot in the books. One of my co-workers recently renamed me Carrie Siu Bot and while it is funny, I truly do live my life as a “bot” – making sure I am charged and fully operational for maximum output!

My growth is always one to reflect on.  To appreciate.  To smile with gratitude.  I went to church on Easter Sunday and was reflecting on that Sunday pre-surgery asking God to get me through the brain surgery.  Fast forward 12 years and how quickly I forget to thank God every morning for the miracle he has given me.

I am more confident now in saying I am disabled. After 30 years of living with a rare disease, I have accepted.  With acceptance comes peace.  Once I got to a state of acceptance, I am okay introducing myself as someone who is disabled.  I always thought I had to work a little harder, be a little better than a “normal” person to prove that disabled people can too be successful.  I don’t think that anymore. I am just Carrie, doing the best I can do, being the best I can be everyday.

I recently started taking a mindfulness course and every morning I take 10 minutes and focus on what is good in my life.  As part of that practice I remind myself that I am truly living a miracle.  Despite having 2 surgeries – 2 new batteries in the course of 10 months, I still believe that DBS has been my miracle. So today, I reflect on what I have today, what I had in the past and can only think positively about the future.  The one thing I know for certain through this crazy part robot experiment, is that I am so thankful everyday for my family, my tribe and the miracle of modern science that I am able to be a spokesperson for such a rare disease and an advocate for medical research.