Why

1 in 3600 boys. That's the short straw we drew. I cant win at a slot machine and i have never really won playing the lottery but these odds I win. how is that 1 in 3600 are boys are afflicted with this and there is no cure. How does that happen. why is it happening to my baby?

I am so angry. I don't understand how this could be Gods plan for any child. I want to beat something or someone up, I want so bad to keep my mind in the present, to enjoy every one of his smiles without wondering if I will still get them 15 years from now or will i have said goodbye to him by then. No mother should have that thought ever.

knowing that Robbie's body is slowly breaking down and being powerless to stop it is horrifying. It feels worst then other diseases because it feels like we don't even get to fight it. Theres no aggressive therapy. There is one drug in the united states that will slow the progression down. That's it one and it wont make it go away just slow it down a little. Oh and we have hope.

I didn't realize i was having a hard time until i started this. i felt a little normal for a while today taking the kids for ice cream, grabbing some groceries, even putting sponge bob toothpaste on little toothbrushes, felt like we were a normal family. Then it hits me out of nowhere and I back to this angry sad place I seem to be stuck in.

Well I guess that was today's dose of sunshine.