Charley's dear friend Max came to visit her at REINS on Wednesday and put a smile on all our faces. He is such an amazing young man. He use to volunteer at REINS just to work with Charley. They always had a special bound. After hearing that she was having a hard time Max came to say hi. I could tell Charley knew who he was especially when she started acting shy! Thanks Max for being so fantastic and thank you to his family for knowing how much we needed to smile.
So here it is 12 days into Febuary and I haven't blogged in ages. I have thought about it almost daily but haven't been able to bring myself to put into words what life has been like lately. I know once I put it all out into the universe I will feel a weight lifted but I am scared. I am at the end of my rope. I am exhausted and stretched further than I ever thought possible. I feel like a shell of a person walking around, smiling, and putting on a brave face. The truth is that helps no one. My two main motivations for starting the blog in the first place were to give myself an outlet and to help others going through similar situations. Charley is going through the hardest time of her life. It breaks my heart to watch her be so frustrated that her first reaction to almost everything is aggression. She is so unhappy. She spits, hits, screams and claws. We are weaning off all her Meds because clearly nothing is working. We have tried every combination of medication you can image and I am so tired of putting her through that. In the beginning I really thought I'd never medicate her but as time passed and I ran out of options it seemed like the only choice for her. The last medication recommended to us was lithium which really scares me so we are getting a second opinion. I have to assume that Charley knows I love her and that I'm trying my hardest - but I go to bed every night feeling like I have failed her in some way. Not to make this about me......but could you imagine feeling defeated and inadequate everyday day at work? It sucks. She is my daughter - my love- and it's my job to take care of her. It's my job to help her be happy. I'm not doing my job. I can't help her. I CAN'T HELP MY OWN KID! She wakes up yelling and pounding on the side of her bed. I go to kiss her and she hits me. Changing her diaper and clothes is like a full contact sport. I have no clue why she's upset. The day continues like this. At breakfast she hits her tray, screams, spits food, and hits me.......you get the idea. Yes we have always struggled with her behaviors but never like this. I can see her frustration. I know she wants to tell me things and she can't. We have tried every communication device you can think of and can't find anything that works well for her. Now I feel like I'm just whinning but there it is. Charley is miserable. I am exhausted and disappointed in myself. On top of it all she came home sick from school on Friday and has been sick all week. She got IV fluids and zofran at the hospital yesterday and is doing a little better. Today she was crying a lot but did keep down some food and fluids. I sure could use your prayers for Charley and for my patience. Phew I feel better already! |