little giggles

I'm overwhelmed with emotions for Lily sometimes.

I watch her and I cry. I think about her growing up and again the tears flow. I just can't stop. But tonight, I'm not thinking about any of that. Its her will. Her strength. I see myself in her more everyday. She's amazing to me! Is it possible that someone so little could be my will? My strength?

Because, as of late, she's going to need to be a bit stronger. WE are going to need to be stronger.

You see, yesterday the pt came. I greatly respect her as a mother, a friend, and a professional. Lily has been doin fantastic,and she still is, but the pt thinks that there could be something more. Without me bringing it up, she voiced the same instinctual feelings that I've had. She wants us to see a neurologist.

She's a member of our club. Her son, Caleb, passed when he was 2 months old. He had trisomy 13. She knows my heartache, my pain, and my constant fear. She admitted that because of that she was leary about bringing it up because we've been through hell. But as she put it, she was loosing sleep over it too.

So here we are. I'm calling to make the appointment tomorrow. When I asked if it meant that maybe it was something with another group of nerves, she said that her concern was that it was more 'in her brain' than just her nervous system. I'm still reeling. I'm relieved that someone else is confirming either my gut or my neurosis. Whichever, we're soon to find out.

Out there, though, does anyone have any ideas? She's got very, very weak muscle tone in both her arms, shoulders, and chest. She also has the nystagmus. What throws everything off is her growth being really on track.


I don't even know where to begin. But in my gut I don't feel like its anything really serious. Something to be concerned about and to address, but not serious.