I know it’s been a long time since I updated.  Sometimes it’s hard to find the time.  Honestly, sometimes it’s hard to find the right words because while Ali is doing REALLY, REALLY well and I am happy with her progress there are still many, many times when I really struggle. I’ve had many people say, “Wow, You’re so strong”.  But to be honest I’m strong when I have to be.  I’m strong when I tell people all about Ali’s triumphs and successes because to tell people how hard it is feels like I’m complaining about Ali.   I would never do that. I struggle all the time, not with what she can or can’t do, not with the huge commitment that we make to her therapy and feeding, not with her general health or with the number of medical appointments but with the chance of losing her to cancer. There are so many aspects of her life and her needs that I can control to some extent but I have no control over whether or not she gets cancer. I try to tell myself that she’s doing so well that she won’t get cancer but the fear literally takes my breath away. After her second birthday I started to worry a lot more, which I didn’t think was possible, because between the ages of 2 and 4 is when the majority of the tumors happen. It keeps me up every single night. I lay there and wonder what’s going on inside her body. I try to interpret every little change in Ali, every little symptom. I read blogs written by other Costello Syndrome parents who have lost their kids to cancer or who have children who are fighting it now and it’s hard to breath. Now, I know what you’re thinking, “Don’t read the blogs”, right? I read them because I’m trying to find a reason to believe that their kids are different then Ali and that Ali won’t get sick but their kids aren’t different from mine. It’s just bad luck and it sucks!