So many losses...

what a way to start the new year...

I just read that an SMA baby, Cornelious, died on Saturday... He was 10 months and 10 days. Many SMA kids have been VERY sick, and when we got to PICU we found Israel, who has been there for 3 weeks and counting. The weather takes no one for granted.

Last week a friend who was to turn 21 on Jan 13 died, after she was healing and doing well from her transplant the doctor arranged a liver check up, which ended up in malpractice as an artery was broken and no one noticed until everything inside her got paralized. Imagine that...

We are sad. Nothing you do can change the fact that the only ones who take good care of SMA kids are their parents. Everyone else makes stupid mistakes out of carelessness and stupidity. It is so unnerving, as whenever you meet people or doctors, they say "oh, but you have nursing care, right?". Like that settles the issue of bein stress free, free to work, free to do whatever... How? The high anxiety and stress of what a stranger can or cant do is beyond belief. If I count all emergencies that have happened... all have been due to a small stupidity moment of someone else... not us, not our baby... To top things, you go to a hospital and there you find the same... nurses and RTs that shouldn't be there because they barely do their jobs and are lazy... and still getting paid. What is the difference from here and our island? The doctors having a broader knowledge, and more availability of services. Everything else is the same crap: malpractice due to stupidity, malpractice due to laziness, malpractice due to overwork (most work 2 shifts, not that it includes quality of service!).

Its all tiresome, and very very draining. We have no one to turn to, and we know that situation would be the same for us anywhere in the planet... due to our limited family and our limited friends. Groundel,LS and Coriolis are always there, and have been of BIG support, but beyond them... Well, beyond them is all the perfect beautiful familiar strangers on the SMA Support group that have been "virtually" there all the way... and they know how things are and why we have this ongoing desire to live each second to the fullest. Without them, I dont think we would be here at all... I dont think Deedee would be here, period.

Besides this, both Mark & me had to cancel our classes, as they started yesterday and obviously we wont be able to attend until Deedee is back home... which may take up to 2 more weeks if things go well. A small drawback, but our main reason for being here is Deedee, so she is the priority. Mark is more obligued, as he must get a RN (registered nurse) degree for Deedee's own well being. Me, the diploma I'm completing is for keeping sanity and having a real world stress, I need it so I wont go insane being between 4 walls all of the time, and it is not so critical. I'll take classes next month, no problem.

Mark may have a prospect job, but as every other offer it is far... We will see if it is worth it or not. But that has to wait until Deedee is home as well, and they may fill the spot by then... Whatever happens, hope things will fall in place little by little.

Me... I'm fed up with some people, both friends and foes. I'm making sure they get their own "mandá pal carajo" at the right time. I'm tired of bearing the sign of "Pendeja a bordo" or something... That's how it feels. Being good and nice doesnt mean being "pendeja". High stress, high anxiety, high everything... Including high belief in things working out and getting better.

Sing along:
"You take the good, you take the bad,
you mix them both and then you have
the Facts of Life, the Facts of Life..."

10-4