Hello everyone, my name is Jarek Różanowski and with my brother Waldek and my sister Marzena we have muscle atrophy, we live in Somoninie and we would like to present to you an article that we wrote some time ago and which we attached to Monika’s blog.
Monika
Searching on the Google+, I found the picture which was put by Różanowski Jarek. Cheerful girl, running through fields with a cloud of balloons in her hand … I knew that Jarek is sick, but it caught my attention that he seems to be always cheerful, curious about the world — knowledgeable about innovations in the IT industry, working in the Avalon Foundation, writing Jarrek.pl blog.
I asked him if he would like to write to our Balloon about himself, about the foundation, and about his everyday life. On this occasion I met Jarka’s brother — Waldek — and they both quickly agreed to create texts for me. Note, they were writing separately, without consultation, I just made a mix out of these texts…
Waldek
Hey, I’ll start from the end, but maybe it’s the beginning, I’m sure each end is the beginning of something new. How did I get here? I can say that it is thanks to dreams and simply by a chance. It’s very often that the best things in life happen by accident. This does not mean that we have to wait for them with folded hands. No, it’s quite opposite, we need to help our destiny and have faith in dreams. If one believes that its dreams will come true, that’s half the battle.
It started with a dream which I’m trying to realize with my brother and sister. Before telling you about it, I’ll start from the beginning. My name is Waldek, I suffer from muscle atrophy (in a shortcut, it is that my muscles are getting weaker and weaker, and eventually they will disappear). From the age of 10 I am moving in a wheelchair, from the age of 15 I cannot raise my hands. My illness is genetic, so very often siblings are ill too.
Jarek
Hi, I’m Jarek, and I do not really know from where to start my story, so at the beginning a little bit of facts. I am 24 year-old (but it always seems to me that I am less than that), I have two sisters — Marzena and Natalia and one brother — Waldek.
We are four siblings, of which three: Marzena, Waldek and I suffer from muscle atrophy. Muscle atrophy causes that we cannot scratch our noses and a few other important parts of the body, fortunately our youngest sister Natalie is healthy and she helps us in everything.
Waldek
The three of us were learning at home to complete primary school. Learning at home is not the same thing as at school. Without peers is rather boring. After primary school I had a five-year break from learning. I suppose I would not go to school (not because I did not want to, but rather because reasons which were beyond me), if not for a good luck we had. When Jarek finished his lower high school, the principal of the School in Police for people with disabilities came to us.
Jarek
In 2005, thanks to the ‚Foundation for People with Muscle Atrophy’ I went with Waldek to ‚Special Education Centre for Physically Disabled People in Police’, where our lives were changed, and we began to grow our balloons and slowly float upward.
We went to Police, to learn in high school, but what we really learned was living in a society. Although I do not know if we had a lot to learn, it’s for sure that thanks to this we have become more open to the world and people.
Our life has changed a lot, we met many new people — assistants, teachers, educators and students. It was a big change, because at home we had contact mainly with each other only. While time was passing, previously met strangers become friends and friends with whom time turned into a waterfall. Places to which we did not have access in our village, such as a cinema, shopping center, our favorite ice cream shop „Cafe Venice” and many others were adding a lot of colour to our Ballons.
Waldek
It was a very good decision in our lives, not only because we were able to continue our education, but also because we have learned how to be independent, we met many new people. With some of them we became friends. It was a time when, despite our disability, we felt fully able, we were changing four walls of our room for a bus, with which we were able to go everywhere we wanted, simply going for a trip to a cinema, for an ice cream or a pizza, all these was possible without a huge preparation.
Therefore, while the time of returning to home in the village was closer, I have decided that we will start collecting money for our own apartment in the city, because during these six years, living in Police, I realized that this is how I want to live, and even despite my disease I would like to feel free.
I knew that the Internet is a medium which offers great opportunities, so I created my www.iwanttodream.com website through which I am looking for people who want to help me and they are helping, and I believe that my dream will come true.
Jarek
We spent six wonderful years in Police. Although, we had our ups and downs there, we remember that period as the best and while being at home we joke sometimes that we miss ‚the home’. That’s why we established our Internet website and our account on the website of the foundation of Avalon to raise money for our own apartment omewhere in the city, and preferably there where we created our dream, the place with which we share a lot of memories — Police.
What kind of a dream is that? This is not a Bugatti Veyron or any of Ferraries, is simple, almost ordinary. Just like any one, I would like to be able to decide about myself. To have my own place, my own four walls, for meeting with people there, just to have my own apartment. This is my dream. The thought that maybe someday this will come true, makes me happy and gives me strength.
Waldek
There are moments of doubt, when I have enough of everything. Sure, but that’s normal. I think there is no man who would never be sad, but nothing is forever, that too. Sad moments pass. Sometimes friends help, sometimes your favorite music, and sometimes it is enough to say: ‚That it can always be worse’, which does not mean that it can be better, to which I aspire.
Do I have other dreams?
I have many, some of them are changing, some remain the same. I would like to study psychology. There is a few more but they are just for me. I create websites as an amateur. But someday I would like to be a professional, and to make it happen, I’m still learning. I follow all information regarding Internet, social media, startUp’y etc. And in November 2012 I started my first job ever (of course, via the Internet) at brand24.
Monika
I asked boys for consultation … Seeing people in wheelchairs, people with disabilities, I never know how to behave, either to help them or rather not accentuate their weakness … We decided together that it is worth writing about it. If you have similar doubts what to do — read.
Waldek
I used to be upset when someone tried to help me, but it was probably because I realized that fewer and fewer things I was able to do myself, and others wanted to help me even in those activities with which I was still coping on my own. So now, while you are asking me, one such situation came to my mind.
It was my first year in Police. ‘Grzybek’, one of the assistants, he wanted to feed me, and I yelled at him saying that I can handle myself. I quickly forgot about it and one day when we were talking about the good old days he told me that he remembers that situation when I yelled at him. He was not aware of this and he just wanted to help while I took it as his unnecessary effort. Now I know that people are trying to help us even if they often do not know about our limitations and capabilities and this no longer bothers me. In case of such situations, I have learned to say that I will be able to handle myself. My disease is progressing, so I know that what I am able to do today without difficulty, tomorrow might be a harder task to be done, and when I cannot handle it I will ask others for help. The presence of people who want to help me just makes me happy.
Jarek
I do not know if it happened to you to offer assistance to a disabled person, and she/he refused being offended or even shouted at you. If it did not happen, that’s fine. But I know that these situations happen. From the point of view of non-disabled person, it must be quite odd. The fact that she/he wants to help someone leads to being ‘slapped on the wrist’. From my point of view, it all depends on the situation, because if someone offers her/his help –it’s OK and even the second time „maybe or perhaps” it is still fine, but if she/he does not ask for the third time and just starts helping, a person with a disability gets nervous because someone makes her/him feeling more disabled than she/ he actually is. At the same time a person who is helping a disabled person may take away the only opportunity of doing a thing which a disabled person is still capable of doing by him/herself But sometimes it is also possible that a isabled person will immediately start screaming while offered help and that is really strange. Please do not be bothered or discouraged by this. You may respond in an equally significant way such as ‘well, I just wanted to help’- maybe such a person will think twice the next time and will be a little more polite.
Jarek
Everyday life — at home. Nothing happens, so to have at least any contact with other people we go to ‘Regional House Offering Help in Rybaki’ where people from nearby area attend too, more or less disabled. There we are doing things like stained glass, paint or other such things.
Most of the time during the day we spend in front of the computer, this is kind of the window to the world for us — made of plastic, but helps to kill the boredom. Facebook helps in communication. Although having 300 friends on Facebook is not the same as going for an ice cream with 3 people, it is always better to have it, because after all, there is nothing more enjoyable as a new friend on my fan page Jarrek.pl
In addition to viewing Facebook, I watch the series — Dr. House, Dexter, Californication, Grey’s Anatomy, and more. This is not very ambitious, but I have to do something. I would like to create websites, but what I need is a decent kick to start learning about it.
(===== L — and here you are — a kick, it’s from Monica
Ps. Shit happens. But life goes on.
Waldek
How to chase the balloon and catch it?
Probably there is no rule how to catch a balloon and enjoy it. Definitely you need to believe in what you are doing and do it with all your strength. If we do something half-heartedly, that’s for sure we will not succeed. You cannot give up. If they are ‘closing door’ in front of our face, just use the window with a smile on your face in order to achieve your goal.
People are my balloons, we can change for them, help them and feel needed because of them. Not only believing in that others can help us, but also helping others is my motto. The reason for that is not because of the fact that helping is appropriate but because we want to do so. I want and I believe in that the good always comes back, and if there is at least one person who feels the same way as I, then I have my balloon.
Balloon … Sometimes I’m ashamed because of making complains. I am bothered and always looking for perfect solutions, or crying over spilled milk which does not make sense either. Boys, you gave me (I hope that I can say — US) a great kick to act and I sincerely thank you for that - Monika.
If you want to help us, you can donate some coins - and we say thank you in advance :))
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