Zastanawiałam się jeszcze stosunkowo niedawno, dlaczgo tak trudno jest mi zaakceptować fakt, że Benio jest inny.
Że ma autyzm. Lekki ponoć, ale jednak autyzm.
Że ma epilepsję.
Bądźmy szczerzy. Nikt świadomie nie życzy sobie innego dziecka. Dziecka, do którego w zasadzie przydałaby się instrukcję obsługi. Wszyscy marzymy o pięknych, mądrych i zdrowych dzieciach.
Tak było ze mną.
W zasadzie nie chciałam niczego nadzwyczajnego. I przez kilka cudownych i naprawdę beztroskich miesięcy nawet to miałam! Tę zwyczajną normalność.
Wymarzony, zdrowy i prześliczny chłopiec, który w wieku 12 miesięcy już potrafił nazywać rzeczy w trzech językach! Dumna matka oczyma wyobraźni już widziała jego przyszłość usłaną różami i pasmami niekończących się sukcesów.
Aż tu nagle przyszedł 14 miesiąc i wszystko diabli wzięli. Choroba pustoszy ten przepiękny mózg malucha i od tamtego czasu, aż po dzień dzisiejszy dostajemy sygnały, że coś jest „nie tak”.
Nie tak, bo Benio unika dzieci.
Nie tak, bo Benio bawi się najchętniej sam.
Nie tak, bo Benio płacze bez powodu.
Nie tak, bo Benio nie rysuje tak dobrze, jak inne dzieci.
Nie tak, bo EEG jest patologiczne.
Nie tak, bo Benio dziwnie się zachowuje.
Nie tak, bo Benio zamyka się w swoim świecie.
Nie tak, bo w jego uszkodzonym mózgu powstało ognisko epileptyczne.
Nie tak, bo Benio nie reaguje na żadne leki.
I jak to się do cholery ma do moich wyobrażeń? Co to ma w ogóle być??
Jeszcze do niedawna nie chciałam puścić. Robiłam wszystko, żeby przekonać siebie i innych, że nie mają racji. Że Benio jest takim samym dzieckiem, jak każde inne.
Ale jakaś cząstka mnie wiedziała, że to nieprawda. I wiedziała, że kiedyś przyjdzie moment na smutek po utraconych wyobrażeniach.
Moment na na pretensje, na bunt, na żal.
Moment na płacz. Dużo płaczu.
…
I wreszcie moment na prawdę.
Moment na akceptację rzeczywistości takiej, jaka jest.
Moment na akceptację mojego dziecka takim, jakie jest.
Moja „stara-nowa” przyjaciółka przeżywa żałobę po utracie męża. I to ona uświadomiła mi, że to co obecnie czuję to też rodzaj żałoby. Żałoby po moich marzeniach i po wizjach tej usłanej różami przyszłości mojego dziecka.
Gdzie teraz jestem? Jedną nogą nadal nad powyższym wielokropkiem. Drugą powoli badam grunt pod nim. Powoli, bo choć staram przekonać siebie i innych, że wszystko jest OK, to jednak nadal mi żal. Żal tego co mogło być.
Jedno wiem na pewno. Nie chcę, żeby żal po tym co było i co mogłoby być, zdominował moją teraźniejszość i przyszłość.
Niech ten żal będzie, niech go czuję, niech go przeżywam. Akceptuję go, bo teraz już wiem, że bez doświadczenia go nie będę w stanie zrobić kolejnego kroku. A ja naprawdę chcę iść na przód.
Chcę cieszyć się życiem. Chcę cieszyć się nim razem z moim nadzwyczajnym dzieckiem.
Chcę być w stanie mu pomóc. A przecież mu nie pomogę pogrążając się w wyobrażeniach z przeszłości.
Nadchodzi czas na nowy rozdział. Czy jestem już gotowa na odegranie w nim swojej roli? Nie wiem.
Ale przecież nie przekonam się stojąc w miejscu.
Każda podróż zaczyna się pierwszego, małego kroku.
Ja chyba go właśnie robię.
piątek, 22 stycznia 2016
Comments to my: It's 2016 post.
I just have to document them here. Just have to.
Agnieszka K-W.: I am sorry to hear this. It is ao easy to write everything will be fine...but I cross my finger for you. You've always been a fighter...
Agata P.
Dzięki za życzenia smile emoticon Uszy do góry, Oluś!
Lonnie: We have a saying: 'Every home bears a cross of their own', which means that everybody has issue, some the same and some different. Stop comparing yourself to others because you never know if the thing you compare yourself to is true... Your life is not less valuable because that bitch next door has a 'normal' child or a bigger car or boobs that defy gravity! Thinking other people do better or have easier lives only causes regret in what you arent or haven't got. You don't allow yourself to enjoy who you are or what you dó have. You'll always rob yourself of happiness and joy that actually is in your reach by placing it out of your reach instead. Be you, you are wonderfull! And with such a great mom your kids will be great too (all shitty characteristic are from dad...) My life revolved around my weight for so many years, untill I learned that my value or goodness, kindness and love are not defined by numbers on a scale that point out my relationship to gravity. You are not defined by how healthy your son is. And 'letting go' is something you can learn too, as I experienced last year. I apparently needed a burn-out to get the message. Don't go there! Find somebody to teach you how to 'give less fucks' and you'll be happier for sure! Love you Ola, stay strong. And otherwise: chocolate and booze! XXX
Melissa R: I'm so glad to read this reflexion from you Ola! Finally you understood the message, the meaning of beign here...everything is for a reason, for some reason your kid chose you like a mom and why God chose you too, is because you can hold it, you are strong, you are a super woman and you can work things out, is your mission (maybe) in this life...in front of big problems that we face, at least I do, I open my arms and I trust just in God and I try to give my best, because He is waiting that from you...my dear I send you a big hug and I tell you, that everything will be alright! the real life is not in the outside, is inside of you, in your heart, in your soul, in your dreams...
Xavier: https://www.youtube.com/watch?v=e97VrOhsczI
Mathilde: Good for you, Ola, that's the spirit! I really also truly believe that we're very much our own masters of our happiness
Helen: How wonderful to read this. Thank you my dearest Ola. I am celebrating with you in my heart. Cause yes one of the hardest but also one of the strongest lessons (and one of the biggest gifts) in life is the lesson of trust. Trust that this is your path, to be who you are, who you are becoming and what you are here for in this world. This is the path, with all its ups and downs, with all its mountains that seem too high to climb and all its valleys that seem so dark you get scared you might not find the way out again. This is it. Your path. It makes you the woman that you are, and damn I can tell you, you've touched my life and my heart many many times. Trust that also your son and my so special godchild is walking his path. He has his own purpose of life in our world. I have never heard of a child more aware, more caring, more sensitive, more healing. Putting his finger right on the wound of society. Is it easy? No. Does it hurt? Yes. And still. Is it worth it? Hell yes. Look who you've become despite the burdens, the pain, the fears!!! No... not despite... but 'because'. And so all I can say is 'thank you'. And all I can say is 'I believe in you!' This is your path girl, you are awesome!
Marta K: Tak trzymać Oluś,zawsze byłaś fighterką
Magda H.-B.: Kochana, pięknie napisałaś i bardzo mądrze. Całe życie dojrzewamy, stale do nowych rzeczy albo do tych samych, tylko na nowo grin emoticon
Ewa L.: so happy to see my awesome sis next week and spend some awesome time with her! Kocham Cię bardzo!
Tina: Why not smile emoticon
Ola P. Awesome Olu...really awesome!
Jennifer R. "The grass is always greener". Really green grass is beautiful, it's true. It's fabulous to lie on in the sun. There's lots of green, green grass here in Sydney. But I grew up in Perth where there was always drought and the grass was mostly yellow and brown. Less comfortable to sit on but it was actually really beautiful too. Stunning, actually. Especially when looking down upon from the sky (as I fly in or out for Christmas each year).
You look out and you see all these lucky, happy people. We look upon you and see someone pretty darned fabulous too. Things are hard for everyone in their own way but people show you the best of their life, especially here on FB. I'm glad you're saying goodbye to the questions. Say goodbye to "what if" and "why" and also "should" too. Start seeing your own awesomeness because we already do
For the record, "should" is my pain. I should know by now if I want kids. I should be dating someone, even if it means settling for less than. I should be more successful. I should be a better writer. I should do more around the apartment. I should write a book. I should exercise more. I should cook more. I should manage my money better. I should know better. I should be kinder and more compassionate. I should always be doing something productive. I should be better. But why should I? Because I should. It's not really a reason but it feels like a really convincing one.
Ismael: Why not? why not be his mom, or Marcelo's, or my wife? why not?... Believe me I ask the same questions... why did our kids become our kids?... Why did you become my wife?
You know my feelings, that transcend more than the physical or emotional love, there is a reason why we are together, as there is a reason why we are our kids parents.
I am not sure we should know the reason, I am not sure if we will ever find out completely, but there is one, I am sure.
You are a wonderful mom, you have surpassed my wildest dream of what the best mom could be. I couldn't have chosen a better woman to carry my kids for me and to go through this parenthood path together. Heck, I am pretty sure I didn't choose, we just found each other, our paths were meant to cross. And so our kids were meant to be our kids, and that's saying something
I am so proud of you, words cannot describe. Not just as a mom, but as a woman, as professional, as normal common sense human being (not many of those nowadays sadly), as my lover and as my friend.
Marcelo, Benjamin and I are the luckiest boys to have you in our lives (Ellie is very lucky too, but she is a girl wink emoticon )
We love you, with all our hearts, body and souls, we love you for what you are, who you are, and we love you for how much better persons you make us want to be. Every day, every minute, every second, every breathing moment, we do... even when we are mad at you or you at us tongue emoticon
Whatever happens, I will hold your hand, because I know you will hold mine and we will walk this path together, as we both promised we would, as we are doing now and as we will always do.
I won't let go. I know you won't smile emoticon
Tamona!
Cecilia: It's YOUR choice to be happy. I'm with you, Ola. Hugs
Vilma: Olita,bellas y sentidas palabras, mi hijo tiene una gran mujer, muy cariñosa esposa, mis nietos una gran madre....te he visto luchar , llorar, reír, superar situaciones por ellos, eso es amor!! Aceptar sus dificultades, ayudarles a caminar en esta vida, cuidar de sus sueños, tomarles sus manos, abrazarlos cuando lo necesitan, o simplemente darles un beso, eso es Amor !
Sigue luchando....por ellos, por tu familia y en compañía de quien te ama y apóyense mutuamente.
Espero que con esto puedas encontrar respuesta a tu por qué?.
Siempre estaré para mis hijos y nietos. Los amo !!!
Ayca: Ola, my heart is with you! Take good care!
Agnieszka K-W.: I am sorry to hear this. It is ao easy to write everything will be fine...but I cross my finger for you. You've always been a fighter...
Agata P.
Dzięki za życzenia smile emoticon Uszy do góry, Oluś!
Lonnie: We have a saying: 'Every home bears a cross of their own', which means that everybody has issue, some the same and some different. Stop comparing yourself to others because you never know if the thing you compare yourself to is true... Your life is not less valuable because that bitch next door has a 'normal' child or a bigger car or boobs that defy gravity! Thinking other people do better or have easier lives only causes regret in what you arent or haven't got. You don't allow yourself to enjoy who you are or what you dó have. You'll always rob yourself of happiness and joy that actually is in your reach by placing it out of your reach instead. Be you, you are wonderfull! And with such a great mom your kids will be great too (all shitty characteristic are from dad...) My life revolved around my weight for so many years, untill I learned that my value or goodness, kindness and love are not defined by numbers on a scale that point out my relationship to gravity. You are not defined by how healthy your son is. And 'letting go' is something you can learn too, as I experienced last year. I apparently needed a burn-out to get the message. Don't go there! Find somebody to teach you how to 'give less fucks' and you'll be happier for sure! Love you Ola, stay strong. And otherwise: chocolate and booze! XXX
Melissa R: I'm so glad to read this reflexion from you Ola! Finally you understood the message, the meaning of beign here...everything is for a reason, for some reason your kid chose you like a mom and why God chose you too, is because you can hold it, you are strong, you are a super woman and you can work things out, is your mission (maybe) in this life...in front of big problems that we face, at least I do, I open my arms and I trust just in God and I try to give my best, because He is waiting that from you...my dear I send you a big hug and I tell you, that everything will be alright! the real life is not in the outside, is inside of you, in your heart, in your soul, in your dreams...
Xavier: https://www.youtube.com/watch?v=e97VrOhsczI
Mathilde: Good for you, Ola, that's the spirit! I really also truly believe that we're very much our own masters of our happiness
Helen: How wonderful to read this. Thank you my dearest Ola. I am celebrating with you in my heart. Cause yes one of the hardest but also one of the strongest lessons (and one of the biggest gifts) in life is the lesson of trust. Trust that this is your path, to be who you are, who you are becoming and what you are here for in this world. This is the path, with all its ups and downs, with all its mountains that seem too high to climb and all its valleys that seem so dark you get scared you might not find the way out again. This is it. Your path. It makes you the woman that you are, and damn I can tell you, you've touched my life and my heart many many times. Trust that also your son and my so special godchild is walking his path. He has his own purpose of life in our world. I have never heard of a child more aware, more caring, more sensitive, more healing. Putting his finger right on the wound of society. Is it easy? No. Does it hurt? Yes. And still. Is it worth it? Hell yes. Look who you've become despite the burdens, the pain, the fears!!! No... not despite... but 'because'. And so all I can say is 'thank you'. And all I can say is 'I believe in you!' This is your path girl, you are awesome!
Marta K: Tak trzymać Oluś,zawsze byłaś fighterką
Magda H.-B.: Kochana, pięknie napisałaś i bardzo mądrze. Całe życie dojrzewamy, stale do nowych rzeczy albo do tych samych, tylko na nowo grin emoticon
Ewa L.: so happy to see my awesome sis next week and spend some awesome time with her! Kocham Cię bardzo!
Tina: Why not smile emoticon
Ola P. Awesome Olu...really awesome!
Jennifer R. "The grass is always greener". Really green grass is beautiful, it's true. It's fabulous to lie on in the sun. There's lots of green, green grass here in Sydney. But I grew up in Perth where there was always drought and the grass was mostly yellow and brown. Less comfortable to sit on but it was actually really beautiful too. Stunning, actually. Especially when looking down upon from the sky (as I fly in or out for Christmas each year).
You look out and you see all these lucky, happy people. We look upon you and see someone pretty darned fabulous too. Things are hard for everyone in their own way but people show you the best of their life, especially here on FB. I'm glad you're saying goodbye to the questions. Say goodbye to "what if" and "why" and also "should" too. Start seeing your own awesomeness because we already do
For the record, "should" is my pain. I should know by now if I want kids. I should be dating someone, even if it means settling for less than. I should be more successful. I should be a better writer. I should do more around the apartment. I should write a book. I should exercise more. I should cook more. I should manage my money better. I should know better. I should be kinder and more compassionate. I should always be doing something productive. I should be better. But why should I? Because I should. It's not really a reason but it feels like a really convincing one.
Ismael: Why not? why not be his mom, or Marcelo's, or my wife? why not?... Believe me I ask the same questions... why did our kids become our kids?... Why did you become my wife?
You know my feelings, that transcend more than the physical or emotional love, there is a reason why we are together, as there is a reason why we are our kids parents.
I am not sure we should know the reason, I am not sure if we will ever find out completely, but there is one, I am sure.
You are a wonderful mom, you have surpassed my wildest dream of what the best mom could be. I couldn't have chosen a better woman to carry my kids for me and to go through this parenthood path together. Heck, I am pretty sure I didn't choose, we just found each other, our paths were meant to cross. And so our kids were meant to be our kids, and that's saying something
I am so proud of you, words cannot describe. Not just as a mom, but as a woman, as professional, as normal common sense human being (not many of those nowadays sadly), as my lover and as my friend.
Marcelo, Benjamin and I are the luckiest boys to have you in our lives (Ellie is very lucky too, but she is a girl wink emoticon )
We love you, with all our hearts, body and souls, we love you for what you are, who you are, and we love you for how much better persons you make us want to be. Every day, every minute, every second, every breathing moment, we do... even when we are mad at you or you at us tongue emoticon
Whatever happens, I will hold your hand, because I know you will hold mine and we will walk this path together, as we both promised we would, as we are doing now and as we will always do.
I won't let go. I know you won't smile emoticon
Tamona!
Cecilia: It's YOUR choice to be happy. I'm with you, Ola. Hugs
Vilma: Olita,bellas y sentidas palabras, mi hijo tiene una gran mujer, muy cariñosa esposa, mis nietos una gran madre....te he visto luchar , llorar, reír, superar situaciones por ellos, eso es amor!! Aceptar sus dificultades, ayudarles a caminar en esta vida, cuidar de sus sueños, tomarles sus manos, abrazarlos cuando lo necesitan, o simplemente darles un beso, eso es Amor !
Sigue luchando....por ellos, por tu familia y en compañía de quien te ama y apóyense mutuamente.
Espero que con esto puedas encontrar respuesta a tu por qué?.
Siempre estaré para mis hijos y nietos. Los amo !!!
Ayca: Ola, my heart is with you! Take good care!
So it’s 2016
So it’s 2016.
On December 31st 2015 I hoped that starting January 1st I will magically become happier.
I haven’t.
Instead I landed in a hospital with my son. The Universe just wouldn’t cooperate and simply move all the bad stuff out of my way. Bummer.
On December 31st 2015 I hoped that starting January 1st I will magically become happier.
I haven’t.
Instead I landed in a hospital with my son. The Universe just wouldn’t cooperate and simply move all the bad stuff out of my way. Bummer.
Not that I haven’t tried to persuade the Universe and God to just make me happy. I really did. And believe me I can nag.
So I’ve kept thinking.
And I realized that the biggest part of my THINKING focuses around the same stuff. Over and over again. For months. Hell, for years to be honest. Yawn.
It’s a bunch of worn clichés, look:
Why other people are happier than I am?
Why can’t I just let go of some stuff?
Why can’t I just be at peace with everything I experience?
Why do I constantly crave for more happiness?
Why do I have a complicated, partially autistic and eplieptic kid?
And finally:
Why is being worried and scared the easiest and most natural state of mind for so many of us including myself??? Why is it so fucking hard to think positive?
A while ago I chatted with someone about my kid and I asked: Why is it me all over again? Why do I have to have a sick child?
And this person said: And why not?!?!?
This answer has kept me busy for a long time now. Because, seriously, WHY NOT?
So here I am. Dealing with „here and now“. Believing that everything that happens, happens for a good reason. Accepting that everything I experience, is in fact what I CAN bare.
I’m striking the „Why“ list. I’m really sick and tired of this. I’m done with asking questions, wondering and worrying. I’m done with “What ifs and Whys”.
Life is here. No time for questions, doubts and fears.
Happy 2016 to myself, my family, my friends.
It’s gonna be awesome.
Correction: I AM GONNA MAKE IT AWESOME.
So I’ve kept thinking.
And I realized that the biggest part of my THINKING focuses around the same stuff. Over and over again. For months. Hell, for years to be honest. Yawn.
It’s a bunch of worn clichés, look:
Why other people are happier than I am?
Why can’t I just let go of some stuff?
Why can’t I just be at peace with everything I experience?
Why do I constantly crave for more happiness?
Why do I have a complicated, partially autistic and eplieptic kid?
And finally:
Why is being worried and scared the easiest and most natural state of mind for so many of us including myself??? Why is it so fucking hard to think positive?
A while ago I chatted with someone about my kid and I asked: Why is it me all over again? Why do I have to have a sick child?
And this person said: And why not?!?!?
This answer has kept me busy for a long time now. Because, seriously, WHY NOT?
So here I am. Dealing with „here and now“. Believing that everything that happens, happens for a good reason. Accepting that everything I experience, is in fact what I CAN bare.
I’m striking the „Why“ list. I’m really sick and tired of this. I’m done with asking questions, wondering and worrying. I’m done with “What ifs and Whys”.
Life is here. No time for questions, doubts and fears.
Happy 2016 to myself, my family, my friends.
It’s gonna be awesome.
Correction: I AM GONNA MAKE IT AWESOME.
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