Monday, June 15, 2009

How are things going?????

They are going. That's about it really. We're in a holding pattern. Waiting for all the test results to come back. Hannah's really tired on the tegretol but they say that will go away as her system adjusts to the med. I sure hope so. She doesn't sleep. She just lays around and whines. Ugggh! She's goint through this screaming thing. She just hollors/screams/screeches out of the blue and it's the most unnerving thing I've ever experienced. I'm told that it's not uncommon among kids with autism to do this but I'm not sure what brought/brings it on. She sometimes screams out like that right before she has a seizure too so.....SIGH. Anyway, we just pray, wait and hope. Story of our lives.

We really need to make a move before the summer is up. Please help us pray about it. Hannah's health and safety depend on it as well as my sanity. David needs to be closer to us in cases of emergencies. We thought after July maybe this new seizure activity would get better but so far it hasn't. It's been nearly a year and we just had our fifth status episode. It's really a miracle Hannah's doing as well as she is. Kids just do not recover from such things as well as she has. Worries me to think that she could eventually not recover like she has. I mean how many can she take? I've lost my ability to not appear scared. I am scared. I'm terrified. I do not want to lose her and do not know how we'd live without her. I know people have it worse than we do and that people lose their kids too and why are we immune to that. We're not, but I do not want to lose my child and it terrifies me when I look at it as a reality I could face. I'm really afraid. Yeah, I'm strong. I'm strong because there is no other choice. Falling apart is not an option. Freaking out is not an option. Hannah's strong and she needs me to be strong.

I'm probably going to lose viewers because I'm being honest about how I really feel. When I'm honest people get uncomfortable and they gradually quit talking to me or asking about us. This really is a very lonely road and it sucks. I'm trying to be positive and I'm searching for the brightest ray of sunshine. Really I am. And there are so many things to be thankful for, but we can't get around the fact that things really suck and I'm very much having to work through being afraid right now.

Sorry to be a downer. Don't get me wrong. I would not trade Hannah for anything in this world. Not anything. She's an amazing little girl. As a mom though I hurt for her and sometimes I just have to vent about it.

This photo was Hannah recovering after seizures we were able to stop at home. Koolio stayed with her the whole time. After seizures the person is VERY tired and will sleep for a while usually. Depending on type and intensity.

Another of the recovery

I took these pictures the day of the last Status episode. It had been a really good day of us playing all day long. We had so much fun and no clue of how the day would end. :<(

No comments: