About a month ago I found out that Global Genes was hosting an in person conference in San Diego. I was just going to sign up to learn virtually but after discussing with my husband and checking flights, we both decided I would just go for it! I am so glad I didn’t let my fear hold me back because this experience has been something that will forever change me as a mom and advocate.
Meeting contacts that are so very generous in sharing their resources and experiences has been the most overwhelming gift. To say I have never felt more seen would be an understatement.
What I have learned most from this experience is that I truly feel like I am meant to bring awareness to this rare journey we are on. Some of these individuals started out just like me, a mom lost and a bit frazzled by a life situation nobody chooses to be in.
What was most amazing is the theme of kindness and compassion. I am certain I have created life long relationships during the last 2.5 days.
I’m so grateful I came and thankful my husband encouraged me to go even though I was a bit nervous to leave Audrey and step out of my comfort zone.
This evening I am going home with a stack full of business cards and resources to help not only my family personally but also our CASK Gene community.
Global Genes did an outstanding job providing seasoned speakers that reach this rare community in ways I never thought possible.
I can’t wait to keep #KickingCASK for Audrey and continue to connect with these individuals to help me navigate this rare journey we are on.
I was surround by so many wise words but something that really hit me today was my favorite quote from the preventing caregiver burnout panel:
“Your worth is not measured by how well your child is doing” -Jessica Patay
Kicking CASK 