My heart is heavy today after learning that another angel with Sturge-Weber syndrome has left the Earth.  Colton was only 3 years old.  I did not know him but I do know that his family, like mine, spent their days fighting for life to win over death and looking for the treatment that would stop this horrible disease.  Without meeting Colton or his family, I know they are devastated by this loss and cannot imagine life going on without him.  I know their monster by name.

My mind gets carried away when I hear stories like Colton's.  Selfishly, I am thankful that it was not my child.  But that thought is quickly followed by the horror of imagining that it WAS my precious Angie.  I almost stop breathing at the thought.  NO!!!!  I want to know the details of his illness (but I am glad I don't) so I can compare them to ours and tell myself that his situation was far worse than Angie's is.  I want to hear that he could not achieve seizure control, not that his seizures were well controlled and he passed away during a relapse. I remember again how close we came to losing our precious child, on more than one occasion.  I can make myself crazy with all of these thoughts.  I just might yet.

Each time I hear of a child with Sturge-Weber syndrome passing away, which is far too often, I hold Angie a little closer.  Sometimes I creep into her room and climb in her bed after she is asleep.  I smother her with my presence and inhale the wonderful "miracleness" that surrounds her. Today is no different, and in many ways this is my cure.  I need a physical reminder that my child is still safe from the monster, at least for now.  It is my only means of survival when I am reminded of the precarious nature of living with Sturge-Weber syndrome. And it works.

On a positive note, Angie had an amazing day at therapy today.  She was right on during both speech and occupational therapy.  Her focus and stamina was the best I have ever seen it and both therapists noticed it too.  Angie's ability to learn new skills and information has increased so much and her perseverance makes me one proud mama. We went outside to enjoy the sunshine after therapy and the world seemed a little bit brighter right then.  It is funny what a little sunshine can do to lift your spirits, isn't it?

I hope that Colton's family saw the sun today, too.  I will be praying for them this week as they try to make sense of their new reality.  Please keep them in mind and hold your loved ones close tonight.  Life is fragile and fleeting and not to be taken for granted.