Sometimes you just see things and decide to stay quiet and just forget because it is not worth your energy… Sometimes things bother because they hit you just in the right spot. I guess that this is exactly what happened today… things hitting the right spot. So here it goes…
There are two worlds. I guess that any family with special needs can relate to that. There is the world of the normal ones, and then there is our world. Then you see that whenever the two worlds try to relate, they collide. It is not that life gets any different in either situation, people make it different. People assume you live in agony and misery because you have special needs in your life. People assume that when you face terminal illness everything ends in grimness, and somehow you get a strange stigma because of it. And then people get stupid, and make comments that are not necessarily helpful in any way…
No one can really understand what goes through the minds of families dealing with issues that seem "out of the ordinary”. We’ve had our share of social workers coming into our house expecting people who ragged their clothes and scream in agony jumping up and down and wailing “Why,why,why”… and then they give a troubled look because what we say shocks them “yes, our child has a terminal genetic illness, she will die… but then so will you. Can we move on to all she can do, and all she wants to do?”. Professionals try to go into our psyche and find the chip that makes us wrong… It’s almost as if they believe we come straight from “Stepford Wives”, because we are focused and express almost no feelings (to their opinion). It’s either that, or we don’t understand anything at all of what is transpiring…
In this land of the lost, people just have lost their ability to respond to problems. People have lost the ability to take a problem, analyze it, investigate it, make a hypothesis, and test for a best solution. Oh, I forget, all of this involves actual thinking, not just reacting blindly to things you don’t even bother to know or at least understand! Ignorance eats people’s shrink-wrapped brains. Woe comes to you when you realize all professionals that come to “serve” you follow that pattern… Have they been cloned? Are they a product of an experiment gone wrong? Stupidity in masses is very dangerous, and we’ve experienced it. A lot.
How do you deal with this is even worst than dealing with “coping with your own special situation”. There is no real support. When you already know exactly what you need, they do not want to believe it… They actually work against all that you place in front of them. After all, what do you know? Yeah, our grasp of reality is oh-so limited because of our “situation”. Right.
The big question that haunts my husband and I: "Why don’t you guys have a job? You both have degrees, experience, are bilingual, and are so well educated"! Well, guess what? In order to hire us you need to give us what is called a special accommodation because of our familiy’s special situation. If you are not able to do that, or give us flexi-time, then we have a big problem. In an ideal world services are a given fact, people that have certifications actually earned them and actually know how to do their job, are actually on time, and make everyone live happily ever after. In our world, the real world, services are lousy and just manageable through constant supervision when and if they are given. We do not have the constant nurses we should have simply because nurses do not want to come to our given address (the neighborhood has a bad reputation, so nothing we can do there). The nurses we get do not have the skills they brag about, and actually do not last long (usually after one first incident they do not return as they realize the case is not as simple and easy as they expected). This translates to a need for two people to be in the house doing all the chores both for our special needs child (medical and of maintenance besides what a normal 3 year old would do), and the baby-sitting job for the 9 months old that also is within our roof.
This is a rule in our house: An adult in the house all the time with our special needs kid, and an adult to take care of the baby and everything else. When there is a nurse everything is nice and one of us can actually be out. But when there is no nurse, everything turns upside-down and both my husband and I are homebound. One person can handle all? When our SMA kid has had episodes landing her in the hospital, she has needed two adults reacting to all that happened in a non-hesitant way until the emergency people arrives, and even then, at the hospital, rounds of 12 hour shifts must be run to ensure one of us is always with her and to assure that the hospital is doing what is best for her. Emergencies happen all the time, but we have managed everything well enough so we have been out of the hospital for two years now (knock on wood). Through it all there is a constant truth: This has been the outcome of me and my husband working on our girl together, reacting to her emergencies in a timely effective way. One of us, and a nurse, is not an equation yet (hopefully someone will prove us wrong, but until now this has been the scenario). So… Give us a company that will work with our special demands, and we will happily accept the job. We have tried, and no one wants to cope with an employee that has high absenteeism even if it is because of serious circumstances. In today's world, where people are jobless and killing to get one, our situation puts an unnecessary strain on any employer. More than that, they don’t want to “commit” because of what will become a “high insurance burden”. So, there is your answer. We do not have a job out of being lazy, or out of not looking, or out of being too proud to take something “entry level”. We don’t have a job because although our resume is outstanding, no one wants to deal with our family drama. And there is no way to “lie” or conceal it, because it is our daily bread and butter.
And then comes the unavoidable comment “Then work from home”. If I were a hunter I would have to open a big museum out of the amount of prey-trophy people I would have by now… people who dared to say that. Let’s see… What can I do from home? Help desk, web design, graphic design, call answering… Even painting and scrapbooking on request! Well, good ideas, bad execution. I am completely convinced this is the way to go, but we both have been targets of people that want us to work for free. Sometimes I do say yes simply to keep my skills flowing, and because “volunteer” also looks good in a resume (especially since people won’t hire someone who has been more than 6 months without working… the newest corporate trend). But I am honestly tired of doing amazing work for free, especially when I need the money. I am overqualified for so many things that I have to offer my skills for free? And in the meanwhile, I have a family that really needs the income? Come on! We don’t give up, sending out resumes for telecommuting jobs every day (yes, we do that every day, have done so for the last two years thank you very much!).
Something is out there, we don’t give up… But it stinks that people think we are just sitting here in our house looking pretty and doing nothing. Being caregiver, babysitter, full time online student, and job hunter is not doing nothing. Me and my husband are people who sleep very little, and work hard for our family. We have no outside help. We are alone in our current location. Friends and family are in our homeland, back in Puerto Rico. We cannot do “networking” because we cannot leave the house. We do not get to meet anyone face to face unless it is people who comes to us in our home. Just going to appointments is a big hassle. We have no transportation, no support, and no financial freedom. Everything is linked to everything, but people who do not have our situation do not get it. If you do not have financial stability, you cannot go and fetch your dreams. These days dreams cost money. To scrapbook and to paint you need materials that are expensive. To do web design you need the right programs and training. To go in a family outing you need a car, money for food, money for supplies, money for tickets, money for gas… Kind words are nice, but we need people who go beyond words. We do not ask for freebies… we ask for people actually paying us to do what we love to do and what we must do to earn a living! I have no problems with the idea of earning my dreams, I am a workaholic. We had no idea that our family would face what we do every single second… But life happens, and you have to do what you have to do. In my book, family comes first. Our daughter’s life came first. We saved it. We had to take a chance and hop to our new location leaving behind our known life. A leap of faith that saved her… and gave us the tools to help her. We are ready to move to the next step. Who will help?
A third phrase comes in from people “You have to help yourselves, you have to network, you have to demand services”. I laugh at that ignorance. If we had not helped ourselves we wouldn’t be here. It has been through assertive actions and taking the law as our ally that we have been able to survive in a place filled with racism towards latinos, hatred and envy. Whoever wanted to stump on us, couldn’t. I have always been quiet, I do not boast anything I don’t really know about… I do my homework. I find facts and dispose of fiction and rumors. We have survived because each move I make is steady and strong. When I speak, people listen. I always speak when I know I am right. I demand things when it is right to do so. People loose track of things… and of what is right and wrong. This is the land where only the strongest survives, and aggression and hostility has misplaced values and truth… but I cannot loose myself in this world. We do enough to live, and fight for our family all we must, but we won’t bend our values. We know our rights, and we make sure things get done. Surviving is ensured. Moving out of the situation of being stale and just breathing and not living life… now that demands something simple: A job. To help ourselves that is the ticket… And we go back to my earlier rant about getting a job. ‘Nuff said.
So we have all this, and then people ask how we can live, how we don’t go mad... because they would be so crazy and so depressed… And then you get all the dump on what they have gone through, their “big problems”, how they live their lives… It is very ironic that the more I listen to everyone else’s story the more I see how little they get to really experience life. I was part of that crew, years ago… I lived the “rat lab” life, a cubicle race until you get the cheese and then what… Why people get so riled up about problems at work? Why people get so riled up about gossip and rumors that are not even true? Why people get involved with a bad situation and then complain about the repercussions? I observe things now from my giant telescope, from afar, secluded within four walls most of the time… and I am baffled at how little things change for the “normal” people. They complain about the rat race, but do nothing to change anything… I listen to the same things I used to listen to three years ago… and I think “Wow… Still going? How about landing a big asteroid in your brain to see if something else happens?”. That is rude, but I have never been polite, just correct. From my telescope I see the human dynamics that make no sense, and I have to admit that I smile. Why? Real people in the normal world are the best TV sitcoms that exist: Characters that never learn. I was never normal, and was ok with it. Now I am definitively proud of it. Yes, I have a life with a terminally ill kid… that amazes me everyday, that makes me appreciate all the little miracles God grants at all moments and that normal humans are too busy or full of themselves to appreciate and enjoy… Yes, her situation is unfair and depressing… yet my girl has the attitude and will of Xena, the charm and cunning of Cleopatra, and eyes that out-smize Tyra Banks. Yes, she cannot move… so we help her move. She cannot speak so we help her speak. My girl has higher dreams that the people of the rat race world… they don’t dream at all. My girl lives a full life, and she makes all of us live a full life. She made us fearless, cunning, patient, strategists, survivors, fighters… all in real life, not games. So, yes, from my telescope I smile.
My family is an outlier, united to many other outliers who share a bitter-sweet big dream of dreams. We would like a cure for SMA. We would like a cure for all illnesses. We pray for it, wish for it… And SMA shapes who we are today. We are aware of all the bad things, too aware to actually think further about it. We cannot waste time consuming ourselves with a death sentence that will come when it comes. We rather waste time in what really matters. Grief will have its own moment in time, but it cannot have a hold on who we are and what we do. An unlikely thing that hit our lives made us better even if we don’t like it. I know now the real meaning of William Wallace’s saying “Every man dies. Not everyone man really lives”. We may complain about the limited physical things we have, but we have what is important and we are in a journey that is a big adventure. We have witnessed true love at its most pure expression, in a radical way. In a world of chaos and loss, we stand as proof that there are still a few people who would dare to be true and honest. Living life is not easy, and it won’t get any easier… but at the very least, we are actually living it. I wish that the “normal” people could “get” this little big fact. Their lives would be so much easier and worth living! Get over it, move on, grow. In the end, it is all about growth. And self-realization. And brotherhood. And the bees.
