An overwhelming week it has been. The truth is, the high of earning a segment on @Issue with Rosemary Connors this weekend on NBC10 was a true highlight. The professionalism of the entire experience was truly impressive and the incredible support we have received as a result are overwhelming. When you have a bright spot, you want to celebrate it and savor it.
At first thought, I wanted to share all about that with you. My initial thoughts were to describe the lights, the sounds, the excitement of TV and having a show care enough about our issue and the international mission we hope to tackle. It was truly an experience.
However, life with a rare disease takes you to emotions that vary. When medication is not issued and you feel a point of frustration that you cannot actually put into words, you feel more helpless than words can describe. You cannot understand how a true need can become a transaction, and you cannot describe the anger, frustration, and emotion that goes into the phone calls you have to make. Though you know it is a business, it also happens to be your life.
As you hang up filled with tears and check Facebook for a dose of reality, your son puts his hand on your shoulder. The “reality” you hoped for was happy family photos or uplifting messages. Instead, you read about Manhattan and your son reads over your shoulder.
You cry unsure as to why. You cry for all you face. You cry for all you hope. You cry for all you know. You cry as you pray about the change you hope to see in the world so that you can once again smile like you mean it.
To hope. To change. To dream.