Just a quick little post to say that things are still rough but I am feeling hopeful! Charley is still screaming, crying, and whimpering most of the day but occasional I get a small moment with her that is amazing. Today after school she fell asleep holding my hand! She is still asleep next to me and Wesley is asleep on me. I'm basically in mommy heaven. Charley has had a decreased appetite for about a week and a half now. On Easter Sunday she went to the hospital for IV fluids and labs. Nothing is coming back abnormal. She had a few seizures last week so we increased her seizure medication. I'm just trying to leave no stone unturned. I am constantly telling Charley "I don't know how to help you. I'm so sorry!" I pray that one day I will know. In the mean time I find strength in all the love and support from family and friends. Thank you

As most of you know I've been having an unbearably hard time with Charley. To say that she is unhappy is an understatement. I love her so much. I can accept that she is wheelchair, nonverbal, and legally blind. I can not accept that she is miserable. Her screaming is uncontrollable. Her aggression is at an all time high. I am at a loss. I have called everyone and tried everything short or legal action to change the laws. So here is the deal. Charley qualifies for 24 hours of respite care a month. I have petitioned for more but am told that the max is 30. She doesn't not qualify through Medical for a home health aide or nursing level care in home because she has no "skilled needs". She does however qualify for a place called Together We Grow which would give us a break on the weekends. Charley and I had a meeting with them this evening and they turned us down for services because they fear she will be a danger to the other kids and herself. She also doesn't qualify for care services through the military because she lives with me not Jacob. She does however qualify for a state funded group home which I could probably get her into in a few months if I really wanted. So here are my options 24hrs of respite a month or Charley lives in a group home. It makes no sense to me. Where is the in between option? Where is the support for families who are literally pushed to their max? I am tired, frustrated, and physically ill because no one is helping me help my child. Even as extreme as things are we don't qualify for the services that would be best for our family.

You know you are not in the best part of your life when you are ecstatic that your child made it till 2 a.m. with no screaming. She is up now wide awake screaming and spitting. I keep expecting one of my neighbors to call the cops. I can only imagine what people must be thinking as they walk past my house on a typical morning or evening. This 2 am screaming is the worst though. I'm exhausted. Keith's trying to sleep. The anxiety I feel is so overwhelming. I'm laying her nursing Wesley to keep him from crying and listening to her scream. I have changed her diaper, given her juice, and melatonin in apple sauce. Still screaming. I got on Facebook and started laughing because everyone is posting pictures of St. Patrick's day. It seems like a life time ago that I would have been up at this time by choice enjoying a green beverage. Oh how times change.

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!

Over the years I have seen the confusion and even shock on peoples faces.  Sometimes it comes as I proudly show off pictures of my beautiful girl.  "You take pictures of her just like I take pictures of my kids.  I'm sorry I'm emotional I just never thought about it like that".  Other times the looks appear as I loving wipe Charley's face or sweetly say calm hands please as she hits me.  "Can't you get that kid under control".   It is a labor of love - like being a parent to ANY child.  There are good times and bad times.  What I want you to see - what I need you to see - is that she is my hopes, my dreams, and my heart.  I love her like you love your children.  I pray for her.  I have hopes for her.  I have dreams for her.  She is strong and brave in ways most can only imagine.  She has brought more to my life then I ever imagined possible.  Is it hard to learn that your child will have special needs?  YES!  Was I sad? YES!  Was I scared?  YES!  The truth is I am still scared but for different reasons.  I am scared that someone will miss treat her.  I am scared I will not be enough for her.  I am scared that you will look at her and only see her disabilities instead of ALL her amazing abilities.  You see a girl in a wheelchair and it makes you uncomfortable - I see my miracle child who was never even suppose to make it.  You see a child who screams and hits and think that there is nothing there - I see a child who is so ridiculously smart and so unbelievably frustrated she can't tell you.  Every person with special needs was someones baby once; someones hopes and dreams.  They are not loved less because of their needs they are loved more.  They have been through surgeries and therapies just to do little things that most of us take for granted.  Instead of thinking I could never do that or I don't know how you do it - think about how much you love your children then multiply it by 100 - we do it because it is what it is.  We do it because that's our baby.  The baby we prayed for and grew and delivered and love. It could just have easily been your child but instead it was mine.  Please don't look at her and be sad that it is such hard work for her to walk 10 steps with a walker; be ecstatic that a child who was never even suppose to sit up is WALKING :).  Please open your hearts to Charley and all of our children who are "different" because they are worth it and because they deserve it.