The BITCH is BACK

(and you thought I've gone soft)

Hmmm... Back to "being pissed off" days... I feel soooo at home!

Ever since Thursday things have been... hectic? Um, kinda... Not really... Stressful? Maybe... I'm looking for the right word to describe the chaotic impulse of just wanting to squeeze necks simply to see the blood coming out of the eyeballs... Ok, so this kind of squeezing will have to be done with a torture device, but hey... A girl can have dreams!

Things to make you go UGH! Starting Thursday:
#1 The middle men thast wont communicate to the employees and client... By now it is simple: I HATE NURSES. I hate even more the lack of communication between their company and them, and then their company and us, and then just between us all. What I see is that the people this company hires are just looking for a stable job with benefits(not this company). Some state their plans up-front. Others do their business and blows it all on your face without giving a fair notice first. So we are ending up with a nurse turnover that is draining, stupid, pointless, a waste of time, a waste of energy. Why? Each time a newbie arrives is the whole process og giving the tour, giving our handbook/booklet on Deedee's care (I made it, 42 pages), explaining what we do, why we do it, and walking through the whole DAY for at least the first 3 days. In the process everything also gets caught in trust issues, especially when one sees details that you know are unforgiveable... If us parents were not around, baby wouldn't be safe, period. So after a week you can get a feel of what you have in store with the nurse... But wait! Sometimes they don't come back. Or they are just doing a part-time for a day to cover another so they don't come back. It is a parade of nurses that is suppossed to be helping us... And it is all actually stressing us and disrupting our daily routine, and baby's routine... especially because everyone do things differently and I MEAN differently. We've had to fight all the styles that they have, and having people tell you "OMG! This is all so wrong! This is not sterile! I won't do this, I wont do that... How could they EVER let you go out of a hospital without a nurse!" and treat us as if we didn't knew what we are doing... It is all BEYOND taxing. Because, all in all, the ones that complaint the most know NOTHING of SMA. We know the details, we know what must be done... And they can't even identify when baby is choking in her own saliva. I am tired of being nice and polite. I am tired of the parade at home, 16 hours of absolutely no privacy and strangers that come in to help trying to manipulate what you do and ponder on your way/style of life. If I didnt knew that we will need them in the future, I would call them off. Really. We can manage baby on our own quite nicely and much safely. The arade can lead to germs getting into the house, brought from strangers and make baby sick. We are trying to make a point of that... Hopefully the newest ones do stay for at least a month... It all has been very disconcerting and a very... rough trip (to say the least). For first shift we now have one that has handled SMA type2, so has been the best so far... We know she is looking for an office job, so I see her going at least within a month. She started out on Monday and has been here 4 days. Wow! I'm amazed! Finally one that actually comes in in time and actually do PT/OT/RT, talks to baby and handles her well. But I don't expect this to last long. The company tells her she's gotta work some hours, then changes them without giving her a notice... Ugh! One will start for the second shift next Monday as the one we had simply decided to leave the company without any further notice. We'll see how it goes with that one... She was suppossed to pass by to meet Deedee, at midday... And it is midafternoon. Coocoo one is gone and she didn't knew about it, yesterday she was surprised as she said until next week and my hubby commented the company had said she was not going to be back. Both funny and unnerving. And still no nursing service for the weekends with the hours we requested... They are suppossed to tailor time to us, but that is NOT working.

#2 The familiar FAMILY cozy gatherings that ends up in a Quixtar demo. We are so stupid as to fall for the nice sitcom-like scene that family arrives and wanna see baby... delivered a package that was for me, yay! Deliver the news that they wont make it to DeeVa's special day... And deliver the news on the lates attempt to recruit moi to the Quixtar thinguie/pyramid/so-called-business oportunity/HEADACHE! Why FAMILY don't get that I am not interested, plus it was a really bad time to bring business into the table? I think that there is a moment for everything, pushing a business like you push an enema is NOT the right way! Especially given OUR situation. We are isolated, we see that FAMILY don't reach us to see us, or see how we are doing, or visit us for the sake of visiting... No. There is always one of two things: Either you are here because a favor is at stake, or you are here for business. People: We don't call to get money or to have you doing "FAVORS" to us. What you do with kindness we do appreciate. But what we get is that no one is around because of us. Family is suppossed to be for showing care, for lifting spirits... There are many things we NEED espiritually, in matters of support in matters of simply being there. Money doesnt cover that. Business proposals up my butt doesn't cover that. What Deedee needs is presence, to feel love. Not ghosts. We are sick and tired of ghosts.

#3 Fire down below... Well, more like fire across the street at 1am... So... Loud noises, buzzing alarms couold be heard as if in the living room, 3 fire trucks, police, ER... You name it. It all ended like in the SIMS... Everyone fades away and the owners or people living there are in front of the wet smelly bulding looking dazed and confuzed, then jumping up and down saying things that a Vodu Queen would love to decode. Lovely way to distress peace and quiet... Wait... What am I saying? peace and quiet is NOT in the vocabulary by now. It is an idea, just like Shangri-La! Sleep? Who needs sleep? This is the city that won't sleep, and won't let you... Period.


The saga continued on Friday...
#4 The therapist that knows it all. LKittle Miss Know-it-all shows up questioning baby's positioning issues and bringing her expertise to the table. She has this vast experience on kids, experience with so many conditions. And she wants baby to sit. And makes a case out of it. And repeats things 3 times because dumb me cannot get what she means. Normally I would let it go, but yesterday... Oh, NOT yesterday. I told her point blank that I am not dumb, then comes the '" no need to get defensive" speech... And then I really went ballistic. The nurse ended up having the professional peptalk with her since it seems I need a degree so I am taken seriously. They met an agreement, and we will have a gathering in September with all therapists to reevaluate where are we going. But really... My solution: Woman, get busy getting to know SMA on Types 1. It's the same mistake: just because you SEE a healthy baby, it doesn't MEAN it is. Just because you WANT baby to achieve milestones it doesn't mean she CAN. Each time baby gets seated, she desats... I'm talking MAYOR desat... Plunging from 98 to 70 or below is NOT acceptable. I know what baby can do or can't. If she is distressed, uncomfortable, things can't be done. I may be speaking chinese. Yup, it's all those asian horror movies' fault. Whatever. She's added to my black list. When she reads and gets the facts on SMA, then we'll have another talk. At least the other PTs are more involved and actually listen without insulting one's knowledge. And they admit they are learning as they've had no kid like Deedee. That's the RIGHT attitude. We are ALL learning. There is NO expert. But we ALL must know the basic facts.

And ends up today...
#5 It is 7am. You think that being Saturday at least you can actually catch up on the sleep that you dindt have... WRONG!!!!! At 7:05 government workers shows up and start drilling on the sidewalk right in front of our bedroom. This is the second time... The first one was last week, on Saturday at 7am as well. The heavy drilling is unbearable. Instant get up, get as far as you can... even if you know there is no escape... Get Tylenol for the headache, get earplugs, get baby away from the room (as her's is also facing the sidewalk)... And wait for 2 hours until they go away. And don't even try whining about it! The excuse is the city has this going on all around, so you are screwed... Government permits, so shut up, go back to your house and who cares about your migraine or an ill baby? This city really REALLY suck! Each day I hate it all more and more.

So... No... These have NOT been breezy days. On top of the stress of coping with all that, there is also the stress of deadlines of assignments for the courses I'm taking. And that adds to the quotation... I'm studying because THAT IS MY WAY OF VENTING. It keeps my mind from getting rusty. It gives me entertainment and drama and suspense. It allows my social score to go up. And these aleatory people that come in and out question why in blazes I got myself into that instead of trying to take it easy and rest, or look for a job... May I scream? Thank you...

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!

I needed that... even if in cyberspace no one can hear me scream... Just let's get one thing straight: I HAVE BEEN TRYING TO GET A FUCKING JOB EVER SINCE I GOT HERE! Given my situation and my luck, THAT HAS NOT HAPPENNED. I do NOT NEED to get a FUCKING EDUCATION! I already have a BSBA and an MBA to wipe my ass with. I also have experience, plenty of it THANK YOU. I WILL NOT go to work to NY. My place right now is near Deedee, being available to her. I HAVE GOALS. Since I couldn't get a job nearby I know the best bet is to work from home. I know I can make good money with webdesign and it is something I have done in my past, so now I want to UPDATE MYSELF so I know the latest to make myself MARKETABLE and go slice throuats with my creativity. Guess what? To get that diploma I need to take classes for up to a year, not a bad deal. After that when I get asked that stupid question about not having a degree I can take the diploma and make people eat it, along with the rest, and get the job in the way. I

n the meantime, I don't know how it all will flow, but I trust things will flow because we are NOT sitting around just wishing. While I have this masterplan (which was landed on me in the worst way possible, as we NEVER expected baby to have a FATAL disease that would make us uproot the island so fast... Of all places, coming to NJ? We wanted to be in Fl, and were thinking about it... Moving because you HAVE to in the blink of an eye is NOT fun, it is NOT a vacation, and is VERY taxing), my hubby also has a Master Plan too. We are in the state program, and the state is paying his getting a certificate as Nursing Assistant. That is for the next 4 months. By January he will work using that. And later on he may get the license to be an RT or certified nurse and in the long run he can be the actual caregiver for Deedee (and get paid for it). Or later on he will actually get to put his Associate's degree and almost complete BA in computers to work.

His studying keeps us in good standing on the state program, so we get the help we need for food at least. We are worried about rent and utilities... We are doing our best to be savvy and spend just the right amount. Our resources are going low... But we must follow through these plans somehow. Right now there is no other way. With the recession and the elections being so near, no job has been available for any of us. So, these plans make sense. We are NOT rotting and wishing. We are trying our best to get answers, to actually DO something about the bills.

The hounding dogs from financial institutions within the isle are unforgiving and out for blood. I supposse that the mortgage will go into the pack soon, as the fucking house won't sell either. It's no win situations... Being trapped in finacial distress is NOT fun. Especially when you have been RESPONSIBLE your whole life, and then things like this happen, something that implies life or death, and then you find no cooperation... I want to pay... Hell, I will pay! When I am actually working!

I have nothing. I lost everything. Let me at least have the moments that are left to pull myself together, put my life back in track, so I am able to fullfill all obligations! Do I have a history of being irresponsible? NO. Have I ever been without a job? NO. I've been working since 1995, nonstop, making everyone happy. And after all the hard work, everything crumbles... Talk about STRESS!

And on top of it all, you have the ongoing uncertainty of being responsible for a life that needs you more than anything or anyone else!So... We are pushed to our limits of creativity to handle everything. Smile and wave... Follow a plan... And in the way try not to loose sanity. Try to create special moments. Try to remember the important things in life are NOT tangible. Believe in the goodness of people. Believe that God moves everything and allows things with a higher purpose in mind... Breathe in, breathe out, believe... And really LIVE.

I hate when people make me become a bitch out of their own stupidity. I wish things could be smoother... Fighting all the way to get the things baby needs and that we need to live is frustrating, is demanding, is taxing... You have to be in our shoes to understand everything, the bitter-sweet reality of it all.

And so we smile, even if our hearts are breaking. But I am not to smile to stupidity from strangers. Sorry, but I am baby's advocate. And my own. You don't know us. You don't know anything about who we are, our background, our lives... And you really don't care to know. If I am to face you being a bitch, then understand this: I don't care for you either. Go away. Think hard about why would I do such a thing. And if you can't take the heat, get off my kitchen.

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