One Year Ago

It was a year ago, not to the day, that we found out the name of what haunts our boy. A year ago that our family was forever changed.

I still feel the raw pit in my stomach that aches for what could have been.

The diagnosis came after months of not knowing and months of guessing. It was given to us without full knowledge of what it was and how it could and would and can impact a person's life.

We struggled with it individually and as a family. We cried and we got angry at no one but the disease. In fact we spent too much time focusing on the disease. Giving it even a minute more than is worth. For all it was was just a name.

We reached out and our family and friends--you, gave us the love and support we needed to focus on what really mattered. We started this blog to mostly keep our family and friends updated but also to let go when we couldn't make sense of it all.

We have been through a lot in just a year, as it seems to be that way every year or even every measurement of time. You take the good with the bad, the ups and downs of life and you move along trying desperately to shield yourself from the blows. But honestly it is all really worth it: