But I also see her little arm and how horribly disfigured it's becoming because she bites herself so much and I see her lips, how they are so raw because she cannot stop licking them and I can't help but think, what kind of life is this for her? Why is this happening to her? Whay can't she be the miracle and suddenly wake up one morning and say to me "good morning mommy, I love you". Why does she cry? Why?! Is somebody hurting her again and she just can't tell me? Is she in pain? What is she trying to tell me? Please God let me know so I can help her. I cannot stand seeing her so devastated and not know why. Then I think of my other children, how they must feel when they see me heart broken. It's not fair.
I hate you autism. I wish you would stop invading my child's brain and let her go. You are going to be the death of me. I find myself fighting you, trying not to let you break me. Then I see my face and I see the exhaustion and how I'm aging at the speed of light and it's you. All I see when I look in the mirror is autism. The pain you cause my child and me is unforgivable. I have no choice but to embrace you and that angers me. I know you are not going away and I have to deal with you and try to look past you. But it's hard especially when you cause my child to be beside herself with grief and I know she fights you every minute of every day. We will continue to fight you and hopefully you will stop and go away. And I know that will probably never happen and our lives will continue as they are. We will continue to struggle and have bad moments like tonight, but I will do my best to not let you break us.
Here I thought this blog would be funnier and I would have a thousand stories of how autism is a walk in the park, how wrong was I? I will try my best to capture more funny and heart warming moments than bad. But I have to say, blogging has given me a way to vent the reality of this situation. When I write about my frustration and heart break, I feel better to let it all out. I can't talk about it with anyone I'm close to out of fear of making them feel horrible for me. Although I know my loved ones will read this and still feel bad, but I don't have to look at their faces when they do.
Autism, although you have broken my heart once again, you will not defeat us. We will fight you with everything we have and these moments of plain humanity, will not stop me from bringing you down. I will embrace you, I will find the good in what you are, I will do everything in my power to look beyond you and I will not let you define who Darian is and will become. Hopefully you will get tired of our determination and let her go.
Carnalita, en verdad que eres un ser humano verdaderamente increible, este amor incondicional que le tienes a tus hijas es de admirarse. Como quisiera poder ayudarte de alguna manera, la verdad no se ni como :-(
ReplyDeleteLo que si te puedo ofrecer es mi amor, mi oido cuando lo necesites, o cuando requieras de cualquier cosa, cuenta conmigo. Te amo.
Annabelle, you are such a great mommy. Your passion to advocate for Darian is inspiring. <3
ReplyDeleteHola Annabelle, soy amiga de Eve, y leí su post en Facebook, y me gustaría compartir contigo algo que estoy estudiando, se que como madre comprometida con tu hija quizá ya lo has probado, pero no me quise quedar con las ganas de compartirlo con todo el respeto y la admiración que me mereces.
ReplyDeleteMuchas veces sentimos que no nos podemos comunicar con nuestros seres queridos o no como sabemos, pero existen formas mucho mas sutiles de brindar nuestro amor, y una de ellas es por medio del Reiki, que es una forma de sanacion que va directo al alma y que creo que a tu nena le pudiera ser de ayuda, sin embargo otra forma mas tangible es por medio de las Flores de Bach, ya que estas trabajan a nivel vibracional, y ayudan a combatir el miedo, la angustia, la frustración y la auto sanacion. Es algo hermoso y puede ayudar tanto a tu hija como a la familia para que ella este en un ambiente mas tranquilo.
Anoche me quede leyendo opiniones de terapeutas florales sobre el autismo y dan mucho aliento en cuanto a mejorar la calidad de vida de estos seres tan maravillosos y que efectivamente vienen a darnos unas increíbles lecciones de despertar a formas de comunicación y entendimiento mas allá de a lo que los seres humanos hemos limitado nuestras capacidades. Te mando un abrazo y nuevamente mi solidaridad, si puedo ser de ayuda en algo o quieres que te explique un poco mas como funciona este sistema contactame por el Facebook y con gusto lo explico a mayor profundidad.
ReplyDeleteHola Annabelle,
ReplyDeleteNos conocimos en varias fiestas de Eve antes que nos cambiaramos a Austin. El año pasado yo organizé una conferencia sobre autismo y hice una base de datos de todas las organizaciones que estan haciando estudios (research)sobre el tema. Te voy a mandar los apuntes y otro material sobre este evento.
Saludos,
Jaime L Furtado