Sometime ago a woman I met at a day care said that she didn't think Sophia should go to school, "Poor girl, she doesn't even know how to walk! How is she going to be ok there?!" She was raised in an old fashioned way, in a country like the one I come from, where when you have a special needs kid you want to protect them and do everything for them. You assume that they can't do a lot of things and they never will, so the best thing for them is to stay at home. Even if you want them to go to school, special education is so expensive that most families don't have any other option than to keep their child home.
Fortunately, here in the United States, Sophia has all the help and resources she needs to be able to reach her potential: therapies, doctors, teachers, she even has a one on one at school. Yes, Sophia has everything she needs to be the best she can be, yet sometimes I think I'm the one who is stopping her from doing just that. By feeding her like a baby, or doing everything for her I'm enabling her to be totally dependent on me, I do that out of love, I know, but this is the kind of love I don't want for her. Not from anybody, not even me.
Ay mamicita, hoy más que nunca, aun cuando desde que nació Sofía ha sido una constante, hoy más que nunca me siento orgullosa de ti. Esa apreciación, esa decisión de no confundir amor con aniquilamiento por amor, es grandiosa. El ejercicio de escribir todo lo que tienen guardado en tu corazón, en tu alma, te sirve para entender tu pasado, actuar en tu presente y planear tu futuro. Además servirá de ejemplo y apoyo para muchas madres de niños maravillosos como mi Sofía. Y yo, alejada de ti por las barreras invisibles que los gobiernos ponen entre nuestros pueblos, pero siempre contigo, cerca, muy cerca, con todo mi corazón.
ReplyDeleteGracias mamita, no lo podria hacer sin tu ayuda y apoyo.
DeleteNata que mayor muestra del verdadero amor de madre , muchas veces algunas sin darse cuenta tejen una barrera invisible que impide que sus hijos crezcan , con el paso de los años esta barrera deja de ser invisible para convertirse en un monstruo aniquilador de sueños e ideales. Es por eso amiga mía que hoy más que nunca como dice tu mami me siento muy orgullosa de tenerte como amiga , como hermana , no permitas nunca que nadie cegue tus ganas y deseos de darle lo mejor de ti a nuestra princesa , por que es tu amor la que la mantiene vivaz y ansiosa de devorar este mundo en el cual muchas ya se hubieran dado por vencidas
ReplyDeleteGracias amiguita, tu apoyo ha sido muy importante desde el principio. Te quiero mucho.
DeleteNatalia,
ReplyDeleteyou write so eloquently, honestly and passionately! I know you are an amazing person, but you are also an Amazing mother. Thank you for sharing your feeling and insights on life.
xoBambi
Thank you Bambi for the encouragement, it means a lot!
DeleteEs dificil no querer hacer todo por ellos, a que si? ... especialmente como tu dices, ellos son tan inteligentes que ella sabe que te tiene a ti para hacerlo, pero hay que intentarlo poco a poco.
ReplyDeleteMuy lindo como escribes
Gracias y gracias por leer mi blog ;)
ReplyDeleteI just happended across your blog today as I was looking on line for updated information on my daughter's chromome deletion. My Daughter Charlea also has a 2q36 deletion in a mosaic form. I'm so excited to see you out here and look forward to keeping up with your little Sophia. She is beautiful and prescious!
ReplyDeleteMy little girl is 9 and has many similarities to Sophia. She is non-verbal and uses proximity and queues to get what she wants/needs. She takes us to the bathroom when she wants a bath, to the cupboard when she wants a snack, fridge when she wants a drink and just kind of leads us to what she wants. I can totally relate to the enabling thing. There have been times when I've wanted to sit in protest in front of the bathroom door until she uttered something that sounded even remotely close to bath but I'm not entirely sure she will ever say the word. She also, doesn't prefer to feed herself and often I find my self feeding her even though, much like Sophia she can do some of it herself. Anyway.....I don't have a blog but you can find me on Facebook if you'd like and we can keep in touch. Look forward to more of your posts.
HI Carrin, I am so glad you found me. I haven't come across a parent of child similar to Sophia and I am very excited to chat with you. I looked you up on Facebook but about 10 people came up and I was not sure who was you. My Facebook name is Natalia Bayona Frost, I am really looking forward to speak with you sometime.
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