When Alyssa was first diagnosed with cri-du-chat I thought my life was over. And it was, because raising Alyssa I have found that I have to enter her world and adapt mine to hers. Her world has opened up a whole new outlook on life. For a non-verbal child, I never would have thought she could be so full of personality and have such a rich sense of humor. A day doesn’t go by that we don’t meet new friends and through our encounters have restored faith in humanity. When I can let go of my worries of how people are going to respond to her and just let her be her, joy usually follows. My view of how life was supposed to be is nothing like what it has become. A life of my own selfish desires has become a life of purpose that experiences joy in watching a happy, persistent child who has severe challenges to overcome the most simple tasks we take for granted everyday. With joy, also comes times of frustration, exhaustion, and disappointments. The Five p minus society and all the amazing families is a much needed resource for such times. The support and friendships that have come from a missing chromosome are like no other. As I age, I have come to appreciate how my life changed from seeing the world to seeing her world and maybe that was what life was meant to experience.
