Full Disclosure

Lately I've been feeling the need to talk more about Daniel's diagnosis and to gain support (if there is any) from others.

The problem is that it really doesn't come up in the general everyday conversation and I can't just blurt out to people, "Hi, it is cold out today, my son has Lisscencephaly, how are you?" Right, that wouldn't sound good now would it?

I think about the reaction that may be received too. The three types of reactions I may encounter. With the first being the extreme amount of pity that may be displayed. Then there would be the confused, "why are you telling me this in the first place?" look; and then finally the "okay how do I respond to this in a friendly but please do not tell me anymore way?" So, why would I bother in the first place?

I never want Daniel to be defined by his diagnosis but I also don't want for him to be singled out because of it. I want to educate people. I want people to understand what this disease is and how it affects not just us, but others like us. I do not want to scare others but I feel it is my responsibility to explain what this is to others who have no clue that it even exists.

What is the right way?

When Daniel was first diagnosed a good friend of mine told me to check out this blog. The writer of this blog has a daughter with a version of what Daniel has, though has very different symptoms and concerns. He has written a book that will be coming out next year and really hits home with a lot of things he talks about on his blog.

He recently wrote about being the new nomads here, and I can truly identify with his view. In one of his recent posts he wrote a fine line and I will quote: "But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes...I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one."