So, everything seemed to be set up for success. Summer arrived and all was established: teacher routine, therapists separated their slots, and camp was to begin. The 1st day of school arrived... no teacher. But there was a promise of future classes, and therapies. Second week arrives... SLP and OT expected on Tue afternoon... Out of the blue services canceled as they must be between 8am and 3pm (Summer schedule). No buts about that. No concern whatsoever for everything Dee has to go through in a normal day just to be healthy and ready to face it. A big realization comes true: We kill ourselves to keep our girl healthy so the system can ignore that fact and try bringing her down with stupidity because they did not expect her to last so long. Really. So much trouble for health maintenance, so many things (everything) that must go around that fact... and so little empathy and thoughtfulness from the same people that claim that there are services setup for a child's success... Right.
I see the school system motto of classes or burst, or something... How can a medically fragile kid have the same access to education when everything can and will hinder him/her... especially people's attitude. My kid needs time to do a daily routine for respiratory care. It cannot be changed. It takes away 2 to 3 hours of her daily life in the mornings, and same at nights. Everything is determined by that time... if she gets sick, this has to be done 4 times a day! Furthermore, a common cold sends her to the hospital for at least 3 weeks, and can cause her death. This is THAT important, to ensure at least her lungs are clear and a whole day can take place...
The school system seems to oversee this detail. They now say the rules can't be bent and it is a strict thing... How in blazes can classes, therapies and camp be cramped in an 8 to 3 schedule? How in blazes are make-ups going to happen (in fact, the vault of make-ups keep incrasing thanks to the lack of diligence in making things work!). The teacher now has days to make-up... that he won't be able to as he only has Mon-Wed for 3 hours each day in the mornings... Afternoons are for camp from 1 to 4. Midday is for getting ready and transportation. Therapies were to take place afterwards and at weekends because people were not available on Fridays, and then there is the continuous appaling issue of make-ups! Ugh! So they expect Dee to be awake from 5:30am? And then to be awake and alert for everything until gong back to sleep at 8pm? Really?
I am beyond mad. I am so tired and so frustrated... And more, I feel so bad for Dee and all she expects and so little that she gets. It is a big slap in the face... It almost feels as if the world were punishing her for surviving and living all this time. It is definitive that she is a big outlyer that paople do not want to handle and that is expected to just go away... And I can't help but think that I have wasted my time bringing hopes and dreams and can do attitudes to a little girl that the world just wants to hinder, ignore, eliminate, crash, burn... How can I really explain that the system is so faulty and that people don't come but it is not her fault? How can I keep a continuum of growth and learning when the logical sources give their backs? It hurts me beyond belief that I want to give my girls all I had, or more... and the system only allows bones that are not even a representation of what I experienced... or what anyone should experience. They see wasted time because she will die. They see spending money for nothing. I see potential for greatness, thirst for knowldege, capacity for making big dreams come true... It all breaks my heart. I may not show it, but as I boast anger and try to make heads fly... it breaks my heart so much that a girl that is so intelligent and that has so many capacities is treated as if she were nothing, as if she didn't matter.
It is days like today that makes me believe there's nothing in progress and in the system. No one cares for a little girl that just wants to be. No one understands the effect of this lack of compassion, of the endless list of people coming in and out of her life... Where are her friends? None. Who stands for her? No one besides mom and dad, who are also no one in this so-called system. And then they wonder why she wants to be left alone, why she has attitude... why she rolls her eyes and chooses so many "neverminds" and "whatevers" as answers... Everyone has failed her. And I even wonder if she also thinks we fail her because we promise and create ideas that cannot be followed through simply because people don't do their jobs and are idiots. I look into her eyes and I see such hurt... Not only she has to battle SMA, but she has to also battle people's incompetence and lack of values and heart. She has to battle to get the education that anyone else has. She has to battle to even be able to get some cathecism and do her first communion. She has to battle for every single right that she has, and that normal people don't even care about... such as learning, culture, and values. She has to battle to prove herself in everything, school and life. It breaks my heart that I thought I could give her all the tools she needed for success, and I have completely failed at that.
How can I get a fricking job if I have to be on top of every single second of her life, just so people actually take her seriously? Everyday a new call, a new nightmare... working the system. How can I study when all my energy and time goes to advocating for meager breadcrumbs? I am so tired, so drained! And it just doesn't stop. It is all a train that is in a continuum and just won't stop. Everyday a new issue. Just when you think all is going to be solved a new thing comes in and makes everything worst... And we manage to do everything to keep her healthy so all of this happens and makes up ponder if this life is worth it. Really. In an ideal world all is worth every effort... But living like this, surviving every day, fighting all the time... it is all very discouraging, and frustrating, and draining, and sad... And if that is me... I can only imagine her. I can only imagine the rage inside her. I can only imagine the dissapointment at the wordl, at people, at us...
I know I won't give up. I know I'll keep the big fight. I know that more later than sooner she will get a piece of what she needs... but it all doesn't make it all right. It all doesn't hide the fact that things like this are the basis for society being as it is these days. I long for the days of honor, when people actually took real interest in the human factor, when God was part of everyday words and when being humble and sharing and playing nice without concealed intentions were actual deeds and not just creatures of fable. I long for justice, fairness and truth. To have courage these days... To have honor these days... Wow. And this is the world my girls are growing into... I am so sad for Dee, not being able to be and do all she knows she can do because people are idiots. And that is something I cannot change for real... fight yes, change no. What a thick skin my dear girl will develop just to survive this world of beasts!
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