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.
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Comments: 34
So, you're writing a book? What's it about? Do you let the story tell itself as you go along or do you have a plan about how to get to the ending you've decided on?
A little of both - I have a general plan but as I write it can shape it's self. It's a story about 2nd chances and it's a fun story but I like to think you don't see the end coming! :0)
How's the book coming? :)
Well this seven hours later and the visitors were evicted, the plumbing is fixed, bio-fuel was picked up for the generator, power is re-established via generator and the laundry is getting done. Supper is in the oven and I'm done in. With any luck tomorrow will be an improvement.
Write. Write. And write some more. About anything--the annoying mosquito chasing around the ceiling of the room you're in; a debate of flannel sheets vs. Egyptian cotton with a ridiculously high thread count; about the shapes of the branches of the trees on your way to the grocery store for more toilet paper. Anything. Any kind of outlet for the worry/energy is better than keeping this stuff chained down and muzzled inside where it will do more damage in the long run.
One thing--you are a GOOD MOTHER. The evidence on which I base that opinion is your own statement that your daughter is the strongest person you know. You are the best role model she's ever had--give yourself some credit. You have a lot more awareness and information now than you did before the diagnosis--and you will know what to do with it if she has another serious episode.
It really is okay to take some time for yourself and let your guard down for a few minutes. Up to you when you go back to work--but when my son was in the hospital, I stayed out around 2 weeks and didn't really start recovering from the shock/trauma until I went back to work.
*steps off soapbox with deeply apologetic bow for putting the subject in your face*
Now, what's the subject of your book? Fiction? Non-fiction?
Who do you like in the Super Bowl? Any great snacks planned for game day?
I am writing through this, I have endless hours in the hospital and anyone who tries to sleep in one of those chairs knows it's not really doable.
I am doing best to live my life and redefine what my life is, one step at a time. :0)
My book is about 2nd chances it's fiction. :0)
I am disappointed in the Superbowl this year - I wanted Denver and Baltimore ruined Manning VS Luck and ultimately Denver in the big game. So snacks I am thinking going mexican - tacos, chips and dips ect. :0) How about you?
I'm curious about the brother vs. brother coaching aspect; I vividly remember the Manning vs. Manning quarterback game a few years ago. I'm not that well informed about the rudiments of football but I do work with about 15 men at the office (2.5 women; we have one toilet, they have three) so I'm sure someone will take great delight in explaining the game to me. (I'm the bossy older sister type when I'm at the office--and they're all (mostly all) young enough that I could be their mother).
Let us know how the progress on the book goes. I'm rather curious about the whole find-an-agent/publisher process, myself--particularly what kind of challenges crop up and how best to deal with them.
Second chances--as a theme--presents so many possibilities. That's very thought-provoking...
I hope she responds well to treatments and heals fast!
I know a thing or two about being in the hospital for your kid. And i think i know just what you mean about dealing with people. when someone is talking about prayers or god's plan or whatever...trust me i know the feeling there. And not just that, even the people that genuinely mean well with what they are saying can make you want to scream. I still feel that way when people ask and talk about Noah. "oh hes doing fine" or when someone in some way belittles his problems making me want to just scream "oh good to know its not that big of a deal. Its not like we're at the hospital 4 times a week for therapy, braces, getting injections. Not to mention spending EVERY waking second being parents AND his therapists."
sorry for rambling....I just meant to say that i get the background voices when someone is talking to you about your kids issues.
so, onto a boring topic...how's the weather where you are?
I didn't know you were writing a book! Of course it's really hard to keep up with everyone that I would like to online. I've met so many people, especially since joining gather.
On another note... I've now become hopelessly addicted to Star Girl. I think that I may be lowering my IQ with that game, but it is so addictive... I'm not certain what all platforms it runs on, but if you ever need some mindless entertainment, I'd recommend that game.
You'll get through it and be stronger for it.
I've always made it a point not to ask an injured or sick person or immediate family about a problem. I know they get sick of telling the same thing to people every day. Getting the info 3rd hand may not be as thorough or accurate, but it gets me the basics.
But let me tell you about the book I am reading right now. Its called, Artemesias Passion by Vreeland. I read her Girl in Hyacinth Blue a few years back and loved the artsy theme. So far the book is turning out to be incredible.
Blessings, Friend~
In my experience the best a person outside can do is what I'm about to do.
1) I have read what you chose to say.
2) I am going to be here if you want to talk about anything!
3) I am going to leave you alone if you choose not to talk about it.
4) I'm not going to lecture you about prayer because we may not share religious opinions, and I don't want to push you.
5) I'm going to hope for the best, whatever that may be.
6) wanna talk about something else? I'm loving the new oldies station I found!!!
7) How's your book? What's it about?
I hope all is better soon yet later in life this journal may help others
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