Today was one of those days where I got a rare nap, oh how I enjoyed it. When I woke up from my nap I had a vivid memory of a dream I had while I slept. In my dream I was in some public place that had a large set of stairs. I was trying to walk with my children to our destination, but they ran away from me. The next part of my dream was looking back and seeing that Blaise had taken all of his clothes off and was climbing the stairs with Maddock. In my dream there was a group of people sitting on a bench and they were laughing at Blaise. Of course in my dream I gave them the what for, and they immediately felt bad. Now obviously there is something going on in my real life to mimic this dream. It brought up so many emotions for me, it felt so real. I actually felt the sting in my heart. This is why I say I love my bubble.
This past weekend I had a birthday party for Maddock. Although typically birthday parties are fun filled events, for me they are a time of great stress. Having a child with Prader Willi Syndrome makes these occasions a more challenging time. I have had a few successes with keeping Blaise safe and happy, this party was not oe of those occasions. Not only were there food issues, but major behavioral meltdowns as well. I remember looking around and seeing people stare and make faces, seeing people looking at my child like he was an alien. Most days I can shrug it off . I have for the most part come to the point where those folks don't matter anymore. On this day they did matter!
On this day they made me feel like shrinking down and climbing into a small hole. I felt so alone, I can't tell you how alone I felt. That is until I looked around and realized that I could climb back into my bubble.
My bubble is the safe little place I have created for myself, my bubble is full of the most amazing people. So as I looked around I realized I could get back to that safe place. How did I do that? All I had to do was look into the faces of my amazing friends who love me and love Blaise. I looked into their eyes and saw acceptance, caring, and trust. Never once did I ever feel alone again that day. When Blaise was diagnosed not once did any of my friends treat him different, in fact quite the opposite. I have people invite us over for dinner and ask what can they do to make it easier for Blaise. I have people who took it upon themselves to research PWS and ask what can they do to help. I am so lucky to have the most amazing family in the world, although my sister, mom, and dad are thousands of miles away they fight this fight with me. I really am never alone in my bubble.
So this leads me to what has really has been on my mind lately. How can we feel safe outside of our bubble. How can we help to educate the general public. How can we help people to see our children for who they are and not what they have. I know that I can't confront all the people who stare at my child, but I want to desperately. I have learned a valuable lesson in life; you shouldn't judge another mother, father, or child. It is impossible for you to ever know what their life is like, the only way for you to do this is to walk in their shoes. If you see a child acting up in public, please don't stare. You have no idea what the back story is for that family. This is not just for parents with children who have special needs this goes for all parents. We are living in very tough times, instead of judging others, lets ask ourselves what can we do to help? What can we do to make someone's life better, even if just for today.
I want to make my bubble bigger. I want my children to feel the love I feel inside my bubble out in the world. That is my wish for today.