Week 5: Tuesday

Yes, another bright and early tuesday.  Jasmine and David are off to yet another treatment.  I'm learning that the easiest way to get them up is by turning on the tv.  She's not excited about the time I can tell but who would be.  My husband especially is not thrilled.  He told me yesterday to get him up at 5am.  They have to leave here by 5:15 to make it there in time.  Yeah, sure thing.  I know how long it takes him to get out the door.  In that case, I might as well call them and tell them he'll be there by lunch. My compromise is that we all be up by 4:30am.  Well, it worked smoothly up until I asked him whether he wanted the TomTom.  "I don't need that thing because I have a map,"  is what he barked. Okay.  Now, I'm a little worried. Maybe I should call them and warn them.  This should be interesting because now he doesn't have internet on his phone or I a emergency GPS on my phone.
Yesterday, we found a way to drop our internet package and not break our contract or the bank for that matter.  We are trying to save and cut where we can.  David's new insurance policy for next year will cost more.  It will be three times more than what it was. Last year we got hit hard with hospital bills from Jasmine being in and out of the hospital so much from what we would later find out was a tumor. So this time, we will try to be proactive about her coverage and increase it to pay less out of pocket.  We still need to play catch up.  I'm sure it will all balance out eventually.  Next we will cut the cable.  It was getting old anyways.  So many channels and nothing on each of them.  This will be interesting for Jasmine since tv is her favorite thing to watch.  She will adjust over time.  
However the real debate for me is whether to give my child another label.  When Jasmine attended school last year, I was told that she could be eligible for Medicaid.  If that was the case I was okay with that but we thought we be just above the income range.  As it just so happens, there is a waiver she would qualify for that would overlook our income.  The catch is that she would have to be declared disabled.  I wasn't thrilled with that idea because I felt like it was broadcasting my child as the outcast of society.  I would have to say that her hearing loss and autism made her incapable.  I hated looking at it like that.  I had and still have great expectations for her.  I don't want to put a label on her that will stick with her for life.  Labels mold self image and confidence.  Life can be difficult as it is when coming to age, why make it harder?  Although, now she has been diagnosed with cancer.  Do I look to the future as I have been or do I just look only to immediate future?  I've been stalling because I hate the idea of trying to prove that my child is eligible.  I feel like I'm trying to get over on the system because I have to prove she is disabled.  Maybe its just how I'm looking at. I don't know.... All I know is that I think we will have to do this to survive. I can't predict the future and I don't know what else we will be up against.  It is defined somewhere in what I read that her condition would have to result in death.  Just reading it made me just put the breaks.  I don't want to think about things like that and prefer to stay positive.  The government was going to make me look at it once again from the negative aspects of her health and being.  Its sad that it comes to this.  It makes me think back on all the times my mother had told me about applying for assistance.  She said when you applied for welfare or food stamps even, you were asked everything and anything.  She said it was as bad as asking you what color underwear you had.  Nothing was personal about your life.  It is ripped open from every possible way to steal whatever dignity and pride you had left.  I guess that is what I personally had to do.  Swallow my pride and do what was best for Jasmine and our family.
Anyways,on another note, she slept well last night, with no nightmares thankfully.  She's been tossing and turning a lot, but its the gut wrenching cries that are so unbearable. She's inconsolable and the only thing that seems to calm her is twirling my hair.  It hurts because she twists so hard.  I guess she figures the harder she twists ,eventually she will feel it.  Unfortunately, the hair is on my head and she doesn't realize it.  In the morning, I will find that I have one or two things.  The first is that I have lost some hair myself. The second being I have I have a huge knot in my hair.   A small price to pay for my child's comfort in such a situation. As I have been told so many times, "it will grow back."