I try very hard not to share too much personal information on Gather and the internet however I've had a month that has totally rocked my world. When this happens for me it's easier to come here where I won't have to actually see any of you in my day to day doings. However I think I am at the point where I need to get a few things off my chest.
My daughter has been in and out of the hospital since Jan 10th, we've come to find she has Auto Immune Hepatitis. Basically her immune system has started attacking her liver, this caused her to become jaundice (she turned yellow). The poor child has been through so much blood work twice a day, shots, liver biop, stomach pumped, countless nights in hospital beds with hospital food.
It hasn't been much easier on us parents either. We were/are scared out of our minds, they don't prep you for this when you have kids. Family and friends try to be supportive but some can't understand that we don't have any more info, that at this point we just want to be left alone. If you want to call and talk sure lets talk about sports or the weather.
People that know look at us with such pity that it hurts. People telling us they don't know what they'd do if they lost their child. They aren't sure how we are staying so strong. Most people say we are praying for you, others go into long winded conversations about prayer. I just want to scream at people, Do you think that I am not thinking of all of this every single waking moment? Hell I am having nightmares so I am thinking about it even as I sleep. For the love of God can't we just pretend that my child isn't ill and that my life will never be the same again and just pretend that everything is how it was a month ago? Seriously I'd love to talk sports, weather, politics I don't care just stop making me think about my daughter!
I would kill for a boring topic right now.
I have become so numb that I can tell the whole story on auto pilot with no emotion. I am not depressed so to say but I don't want to get out of bed, or more to the point leave the house because I'd have to deal with people. I don't want to answer my phone, look at Facebook or email because people just won't stop. I've asked them a couple times nicely and still they ask. I get it people care but I am hanging on by a tread please please ask me about my boots.
I live in a constant state of fear, fear when the doctor calls. Fear when the school calls. Fear of the mail and impending medical bills. Fear of leaving her or not noticing something important. Fear of moving on - I really have no idea how to more forward. What if it all crashes down on me again? I can't make appointments or plan my days because any given moment we could be back in the ER. I don't know if I should go back to work or just stay home and work on my book. You know what I'd love for someone to ask me about my book, I could talk about that all day! Hell any book...
I can't move on if people keep pulling me back but I also can't move on if I don't get over my fear. I won't get over my fear because I am a mother of a chronically ill child. Is that how you spell it? I've never actually typed it out, I've been practicing saying it, hearing it and accepting it.
She on the other hand is doing great, she an eight year old as long as she can play softball she'd good. She is one of the strongest people I know.