Still

She's finally still. Not climbing out of her skin. Its been hours and hours of whimpering and clawing and flailing around the bed. We just gave her the smallest dose of morphine(I was told its the same size dose they give tiny babies) to see if it would help make her more comfortable without "snowing" her. It seems to have worked. She's still. Awake, but a little more comfortable. I can still hear her whimpering ever so lightly, but maybe she might be able to drift off to sleep.

Still I can't believe we are here. Not just here, but really here. I want to hang on to the hope that we could be out of here in a week or two, but there is no hope of that. I want to scream "we don't want this! We want our life back!", but honestly no one is listening who can make that happen. Screaming won't help. Crying? well I hope it does because I can't seem to stop. Ashley's 5th birthday will be spent here. In a hospital room. Without our family, no friends, no celebration. Wrapping my head around that one hasn't been easy. Birthdays are important in our family. I love to celebrate the day my children were born. I like it to be done big. Making a memory that the kids will never forget. This years party was so awesome. It really was. We worked so hard on it. If only...its not going to happen.

So I'm trying to adjust. Adjust to the lack of privacy. To the fact that their is no restroom for parents use in the unit. We have to be buzzed out of the unit and go down the hall to use a restroom. Try that at 3am! Not fun. Their is no laundry facility for the families either. Its all the way across the campus. Quite a hike with your basket. I usually try and do it in the middle of the night while Ashley sleeps. I run back and forth between loads. One of the nurses does help with my laundry on the days that she works. It is one of the biggest blessings I have ever received. Truly it is. My hope is for us to be moved out of the PICU tomorrow. Just because the rooms on the floor have a restroom and a shower in them. Not really, although that makes life much easier. Its because I have to figure out how to raise my daughter here for the next few weeks to months. We need a routine. A schedule. Dr G. told me she would make sure we got a walker in the room for Ash to practice using on the days she is strong. We will have a teacher come in and work with us so she doesn't lose all the skills she has gained. We are going to try and keep on living while here so that when we get home she won't have lost everything she's gained. I wish I could figure out how to get her Amtryke here. I know it would be the biggest encourager to get her going and active again.

Each day and night its sinking in a little bit more. This isnt going to be easy for my girl. Its along road back. We really are here. Again.

I'm missing home. Missing my son. My daughter. Dave. Still...we have no choice but to do this. Again. I the two of us have what it takes to get through it all. I just keep looking at Ash and thinking if she can do this then I can too. After all I just stand here and cheer her on.