Monday, September 15, 2014

2014 Global Genes Rare Patient Advocacy Summit



Awareness.  Activists.  Empowering.  Energetic.  Powerful.  Positive.  Emotional.  Surreal. These are just a few words that come to mind as I reflect on an amazing weekend filled with so much hope and love.  The Global Genes Project pours their heart and souls into Rare Disease awareness, and I feel so honored that I got to be a part of it.  I wasn't sure what to expect, but I was really excited to meet new people, gain resources, learn anything that could help me help Mila, and have a few moments by myself.


The weekend kicked off with a seminar that is something I struggle with everyday.  Taking time for myself...realizing that I'm not alone.  It's about balance and being the best mom and caregiver I can be.  Whether you are a working parent or a stay at home parent of a typical or special needs kid, we all need to take some time for ourselves.  A moment to renew and refresh our minds.  I definitely recognize the need for myself, but when my waking moments are devoted to Mila, how do I find that time?  It's definitely a work in progress.



I was thrilled on all the info and tip given for fundraising.  There were several inspiring parents who have developed foundations in honor of their child, or become president/CEO of companies who selflessly serve the rare disease community.  They had so many tips and words of encouragement for my future goals.  They are the true activists.  I look forward to keeping in touch with them and reuniting next year.

While trying to attend several sessions at one time, I managed to squeeze into the parent to parent chat just in time.  In fact, just in time for the head speaker to turn to me and ask for Mila's story.  Can I mention I stood against a wall...kind of to the side...yet still in front of everyone.  Have I ever mentioned I don't do well speaking in front of a crowd?  Well, mix fear of public speaking with my passion for Mila's life, and you've got a red, teary eyed, blubbering mama!  I think I managed to get four or five words out before the tears flowed.  I didn't say half of what I wanted to say.  I'm sure I skewed Mila's story, yet every parent sitting in front of me could feel my joyous pain.  Joyous pain sounds weird, I know.  The verbal story telling and reflecting of Mila's journey, sparks a grief that will forever remain.  Yet, I burst with joy when I think about what she has overcome.  Her inner strength is like no other.  She fights and progresses.  She is incredibly happy all the time.  She has a gentle soul and a smile that never stops.  She is AMAZING!



The Global Genes Project invited me as one of their guests to the Gala, which was the last event of the weekend.  I didn't hesitate for a second to accept their invitation!  I rented a designer gown and jewelry, bought some four inch heels, and dolled myself up for the evening.  It was a blast!


I got to reconnect with some parents on a different level from previous days, and witness the impact so many individuals have made in the rare disease community.  There was a strength in that room that was a force to be reckoned with!  I was so fortunate to be present and soaking up all the possibilities of the difference I hope to make one day.

The weekend would not have been possible without my cousin, Allyson, who lives in southern California.  She didn't hesitate for a second to take care of Mila and support me throughout our stay.  Her daughter, Violet, is a year younger than Mila, and I was happy that Mila got that social time with her couzzie :) We had lots of girl talk and some beach fun.  I'm so grateful for her and the relationship we have!