Distractions

I'm so tired. I need a distraction, but I don't know what kind of distraction I need. I need someone to talk to, but I don't even know who that person is. And when I think of getting away from life for even an evening, I feel guilty asking someone to babysit. I have a weekend away in Philadelphia that would do Derick and I good, but I'm afraid to leave her with someone only because I don't want them to feel obligated. She's starting to become a handful.

I feel guilty for writing this. Primarily because as far as 'possible' problems that Lily might have, they are nothing compared to what some parents or children endure. She's overcome so much in her short almost 9 months. And that makes me sad...she shouldn't have to overcome that much. She's a fighter, though, my Lily. I had no idea that to parent a living child meant laughing hysterically every single day.

I'm just tired of things. I feel like I'm missing out on her entire first year because of my own shit in the begining, then the NICU, colic, and now all this. We spend the majority of the time going to doctors, talking to doctors offices, consulting with our insurance company and trying to figure out where we are going to get the money for things that aren't covered. And when I'm not doing all that, I'm obsessively searching google for things that could be the problem. It is a faint reminder of life immediately loosing Dylan. This was all I did then and I hate doing it now.

I spoke with a friend yesterday and she was going on and on about her life and her daughter. She was talking about how she's afraid to leave her mom's because then she'll have to be a single mother and she's afraid to do it on her own. I felt for her, really. I can't imagine doing that. Then she asked about Lily and I told her what was going on and she was silent. Then she said that she felt badly for going on and on about her life when I obviously had so much going on and how she takes for granted that her daughter doesn't have any issues. I just feel like I don't have anyone to talk to. Those that I try to talk to blow me off by saying that all kids are different. And the ones that do listen can't understand because their children weren't preemies or they were but they don't have any problems. They just can't possibly understand, and I feel very alone.

I came across something yesterday and I asked the PT what she thought and she said that it couldn't possible be, but I can't help to think that it could, possibly. I was reading about Mild Cerebral Palsey. I read that it can affect different parts of your body. Your left side, your right side, your top, your bottom, or even your top and your bottom. And I read, about mild cases, about a child that can't lift a weight with their arms but has no problem throwing a ball or writing with a pencil. They also mentioned that CP affects the way your brain moves those muscles. So lifting a weight is a different muscle than throwing a ball. That, to me, is exactly how it is with Lily. I can't get that image out of my head now. She will throw her toys, grab for them, move them from hand-to-hand, but as soon as she bears any weight on her shoulders she collapses and her nose hits the ground. I also read that premature babies have 100 times greater a chance to have CP. And they can't possibly have diagnosed anything in the hospital without an MRI. There is just no way. It's impossible to see nerve damage or brain damage without doing one.

If it were something like that, it's nothing that some PT and OT couldn't help. Muscle strength is what we're working on anyway. It's just getting there and getting a diagnosis that's important.

Today the neurologist's office called and said that they had a cancellation this afternoon and were wondering if we were interested. I left my phone next to the bed, on vibrate, and missed the call. By the time I got the message, it was 10:30 and they had already filled the appointment. I was so mad at myself. I put Lily down for a nap and as soon as she fell asleep I crawled into my bed and cried. Then I went to that place again and it took me a while to get back out. I stayed in bed most of the afternoon beating myself up while Derick took care of Lily. I got up though, and I feel much, much better now.

I'm just tired of the whole damn situation. I don't want her to have problems. I want her to be healthy and strong. I don't want her ever to be different. But right now, she is. I just want her to be a happy little girl that runs wild in the grass barefoot! Is that to much to ask?