Sunday, May 3, 2009

From April 29th

We ended up not having the brain surgery done; we talked with the neurosurgeon right before it was scheduled & he said it's not needed and the chances of it giving us results of what is causing all this is slim. We can always change our minds and have it done, but for now we cancelled it. We're not telling our family or anyone else, so I wanted to at least tell you ladies: my mom asked him what he would do if it was his granddaughter in this situation & he said pray, get hospice involved & grieve. Oh, and he was adamant on us writting a DNR (Do Not Resucitate) so she can go peacefully. How long does she have to live, we asked. He said since we don't know what's causing her brain to shrink it could stop today, but if it doesn't, she'll have about a month.
I just don't know what to do. I spent all yesterday crying, it seemed. I've talked with my mom and blamed God for hating me and wishing I could just die and let her live. I don't know what else to do. I can't really take off work because I've taken off all the time I can & now I NEED to work to pay the bills. (I'm not asking for handouts, just stating a fact.) I feel guilty because I got life insurance for her (like 50 cents a month for $5,000 coverage) through work, but I was too cheap to get the $10,000 one for just $1 a month. If she does die, I can't afford the perfect funeral for her like she deserves. Then I hate myself for thinking about my daughter's funeral when she really isn't doing too bad, physically.
Our first neurologist (we've had 3 so far) met with us yesterday and I asked him how a person's brain can be shrinking and yet they're still improving on the outside. He just said if the brain isn't affected in one concentrated place you can't really tell (and her's has been affected all over...). I just don't know what to do.
I'm working today and tomorrow and have Friday off for a 'Care Meeting' with all her doctors and I really hope I can keep composure for that. I'm hoping they can tell me 'Oh, no, she's not going to die. She'll be okay, this is just a minor set back. Her brain miraculously stopped shrinking!' but I know that'll probably be far from what's said.
I just keep thinking about it and wanting to cry. I'm at work, so I can't. If my daughter only has a month to live, shouldn't I be spending every waking minute with her? Why is money more important than spending my daughter's last days with her? Is keeping our apartment, where we won't mentally be able to live if she does pass, more important than her? Just some things in my train of thought...
I know I've been a good mom through all of this (even the doctors have said they're impressed), but that can't stop me from thinking these things. I was even telling my mom I can't imagine having to shop for toddler caskets and planning out a funeral for a baby who didn't see her 2nd year... My mom said she'll get all the info, put it up and will hopefully be able to shred it when she comes home. I have such a good mom.
Okay, I'm going to stop thinking bad thoughts and go back to optimistic while I'm at work. I just had to vent and get this off my chest to someone and it's easier for my to type or text than talk about it in person or over the phone. PLEASE just keep praying for a miracle, everyone. If anyone deserves one, it's Harley...

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