Dissapointed...

One more time? Yup... Actually several times...

As usual, maybe our expectations go beyond the capabilities of the popele around us, or around our little one. Today it was a vendor-show-fitting to select a stupid wheelchair. We took the time to do the proper research, as usual, and had our preferred choice based on Deeva's necessities... The vendor's first attitude was frowning followed by a comment of how we went straight for the best. What? Our baby doesn't deserve the best? What's up with this guy? We'll see about the outcome. The chair is not what we expect, and only do tilting/reclining. The padding should allow her to be straight at least fro an hour. Besides the chair we had the stander info, but that won't be touched until we have an actual hip x-ray that tells them Deeva can use it. Contrary to the doc who just said "have them call me". Whatever...

What bothers? Attitude, attitude, attitude. The people explaining things as if we didn't understand, as if we didn't know implications, and worst: not taking into account Deeva's needs and growth for the next 8 months. Insistence on ordering without taking into account the next 8 months can lead to trouble, as the chair will actually arrive within 7 months... (Next Christmas?)... We will see how useful can that be for her by then... Another thing is the stander thing that is not taken too seriously and other SMA kids have as important part of their thrapy. That and aqwua therapy. They have started as early as 9-10 months. Deeva is 1.5 yrs old, and I dont see why the insistence on putting boundaries that we know she don't have. We have a staff filled with "low impact" people that is NOT cutting edge, dont really think outside the box, and honestly are not doing their job properly or as I expect. And of all people, I can expect because I witness services where i used to work, Vocational Rehabilitation Admin... So I know what is out there, what can be done. And it is the main factor that is so frustrating. If I were an imbecile or ignorant I would be dazzled by everything because everything would seem so magical and right. But I'm not, because of my witnessing things, because of my research on what to do to make Deeva reach her full potential... because we are not average, I am not average... Ugh! And getting comments that leads you to get the point of "why bother? they dont have the money, and is not like the kid can do much" is beyond enraging.

That's about the wheelchair fitting... Now about the nursing company. We are wondering which other company is out there can actully do the job... If that is actually a human target. I mean, we have a stupid manual of care for our baby, we explain everything in a heartbeat, her care is more about being consistent, follow a routine and be aware. No hocus-pocus, no hidden surprises... Well, now we have a star nurse that wont knock and wont call when she arrives because I guess she fears she would break the force field around our house or that it will desintegrate her. Its a big WTF. She comes, ists closed (duh) so she goes. WTF!!! Last week she was annoyed because we sent her home as she was coughing all morning and she seemed sick (gee, excuse us for looking towards Deeva's health). Besides her, no other nurse for no other shift appeared, even if they were scheduled for Friday, Sat and Sun... So, what's up with service? What's up with everything? We asked for our old reliable nurse, and they just did what they wanted (putting her into a case for the night shift) as the opportunity for that came when Deeva fell in the hospital... So they took our nurse to put her in another case... Lovely... I guess they pay more. Its the only reasonable explanation I can think of. They tell us she doesnt want our case anymore. Funny, because I talked to her last week and she sounded quite the opposite when I asked her why she had not come back, that we missed her. The company sucks. That's all i can say about it. They lie to their teeth. And we are getting to the fed-up part. So the drama of the nurses from hell continues... We asked for something, they seemed to hear, and today in the night we have a "meet and greet"with a nurse that, ok at least she showed up, but she is the same as the others that didnt work out... And we wonder, is this it? Its horrible. Its unnerving. Its stressing.

Wheelchair done, nurses done... Getting to the services in matters of therapy. Everything sucks about it. We get the "we will show so you do"and what we think it should be is consistent 3 times a week of coming and doing the actual therapy. We do our part, but somehow we are not impress with the services as it were things we have been done ever since we got all the info and the what to do back a year ago. The only one that contributes something is the communications specialist and we suspect it is because since she works in cerebral parlsey she is exposed to more things related to Deeva's condition... Everyone else is a supporting cast that is good only for keeping us a bit sane with social face to face interaction, that is all. But who knows... Maybe I'm wrong. Maybe they DO something, it is just that I'm so used to things (one of my friends is a top physical rehab therapist and she couched me since this started..., maybe that's why I dont see the razzle-dazzle about them.

Maybe it's me, maybe it's us... I keep thinking it must be us, it cannot be that everything is so lame. It cannot be that we actually do a better job at everything we do. We dont have a certificate for the skills as PT, RT, OT, speech, communications, or as doctors... But we DO have beyond the skill and knowledge of these so called professionals, and somehow instead of boosting our confidence it actually depresses us. Yipeee, we know and can do everything... So... How can others help if they suck at everything they are suppossed to be specialized into?

Tonight, after the morning arguing with the nurse agency, after the afternoon at the stupid fitting, after the dumb meet and greet, after having to take a long nap as I was completely out and drained... I woke up, it's 1am, and I just wrote all this... How I feel? Honestly I feel defeated. I feel depressed. I feel sad. I feel we are wasting out time, our lives. Deeva dont have the quality of service we expect, and seems that no matter what we do if we dont do things ourselves it all just sucks. We dont really have a professional supporting staff that is actually interested in going the extra mile and actually tailoring things for Deeva's skill improvement. There are no friends or family to rely on, at least to give us a bit of energy or just to listen to us. No friendly faces at any given moment of the day. It's just us: mommy, daddy, baby. Oh, and kitty. And it is alright, we accept our fate... But when you see goals and purpose bent towards the will of a flaw system and stupid people serving in the system, you start to wonder what is best.

How can we move on to a level where we can actually make our own decisions if we dont get a job? And gosh, NO ONE would hire us! We have tried EVERYTHING! And then when we think we can balance outside job with Deeva's caring, something happens that requires both of us juggling life. And the more days that passes the more certain it is that raising Deeva requires both of us simply because services are there but are just a mirage, a mental placebo. Sure, a helper may appear, but we actually do all the job so it is done RIGHT.

Somehow the opportunities are faded, the outlook on where to go from here is tied up to getting a job, moving where the job is, getting a new supporting cast for services. Problem: It goes in that order, days keep passing and it all seems a neverending story. Staying here in NJ was imposed on us, and we hate it. We want to go back home and we cant. And the ease of people being two face all around us is really heart-breaking... whoever is nice to you has an alterior motive.

Dissapointed... There are no other words to put how we are, how we feel, how things are turning out. In our microcosmos, we stand and we prevail... The trouble is the rest of the world.