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Diario de una chica con síndrome de Down

30 octubre 2009 - 1:02 - Autor:

Mercedes y su hija Teresa

Mercedes y su hija Teresa

No soy un fanático de las frases hechas y los tópicos, pero en el caso de Mercedes Donoso, la madre que escribe el blog Diario de una chica con síndrome de Down, creo que tiene todo el sentido traer aquí una cita de John Lennon que ella misma ha utilizado en su bitácora “La vida es lo que te ocurre mientras estás ocupado haciendo otros planes”. Mercedes y su marido tienen 6 hijas, la 5ª es Teresa, de 2 años, con síndrome de Down (SD). Hasta su nacimiento, se habían planteado muchas veces irse a vivir al campo, pero nunca terminaban de decidirse, la aparición de Teresa ha desatado toda una serie de cambios no planeados, el primero de ellos, el traslado a Yanguas, un pueblo de Soria con apenas 120 habitantes.

Teresa solo nos ha traído cosas buenas. Lo que siempre hemos querido hacer y no habíamos hecho, pues ahora es cuando hemos sido más valientes. Teresa en vez de ser un freno ha sido un motor.

Otro de esos cambios es el blog que, a su vez, ha llevado a su autora a convertirse ya en una referencia social en la red, especialmente tras llevarse el premio 20blogs al mejor blog solidario. Mercedes ya se ha topado con el concepto de popularidad, aunque, todavía, a muy baja escala: el otro día una madre de otra niña con SD la reconoció en Soria. Además, empieza a sentir el peso de la responsabilidad, de comprobar que otras familias la piden consejos, información, etc.

Para no abandonar los tópicos, podemos seguir con el asunto de los Seis grados de separación para comprobar que Mercedes, nada más recibir la confirmación del síndrome de Down de su hija, se lanzó a internet y tuvo la suerte de dar con el blog de Anna, sobre el que ya he hablado aquí y que no me canso de recomendar y citar. Mercedes supo que Teresa tenía SD a las 9 horas de nacer, no se había hecho la amniocentesis.

Desde las cinco de la mañana a la una de la tarde disfruté de una Teresa, a partir de esa hora tenía otra hija totalmente diferente. Estaba sonriente, pero a partir de la una es como si se me hubiera muerto el hijo. El otro día lo hablaba con la terapeuta a la que va Teresa y es que realmente es como si hubiera muerto un hijo y hubiera nacido otro.

Mercedes tardó un año en asumir la noticia y su asimilación coincidió con la apertura del blog.

Lo empecé porque tenía necesidad de contar cómo estaba llevando mi experiencia, la vida con mi hija. Pero necesité un año, necesité un año para aceptar que tenía una niña con Síndrome de Down.

Mercedes es sincera, no es fácil reconocer a un desconocido (o sea yo) que has tardado en asumir plenamente la situación. La misma honestidad que demuestra es la que le gusta encontrar en otros blogs que hablan sobre discapacidad o SD.

Me gustan los blogs que tratan el SD con las cosas buenas y las cosas malas, no me gusta el trato de Angelito, regalito, enviados del cielo… Me gustan los que hablan de las preocupaciones, de que lo duro viene luego, en la adolescencia. Ahora son solamente cosas graciosas, pero cuando llegue  a la adolescencia creo que sufriré mucho, que lloraré mucho por ver que mi hija quiere llegar a puntos que no va a poder. Lo fácil es ahora, lo difícil es después.

La honestidad de Mercedes continúa.

Ahora soy más tolerante, más respetuosa, antes era indiferente a la gente con discapacidad. Teresa nos ha cambiado a mí y a todo el entorno.

Y, como no podía ser de otra forma, en la conversación con Mercedes aparece un referente, casi un icono del síndrome de Down en la actualidad… Sí, Pablo Pineda, pero creo que es hora de dejarle descansar un poco y no seguir generando debates en torno a su figura. Creo que lo mejor para tener una visión lo más amplia posible de esta alteración cromosómica es acudir al portal Down21 y a uno de sus promotores, el Doctor Flórez.

Y, desde luego, si eres o vas a ser un padre de un niño con SD no dejes de visitar el blog de Mercedes y otros muchos blogs personales que, sin duda, reconfortan y ayudan a los recién llegados. Sí es curioso comprobar que la mayoría de ellos cuentan la vida de niños pequeños, niños que ahora tienen 2, 4, 5 años, pero que todavía no han llegado a los años decisivos. Va a ser muy interesante comprobar esa evolución, descubrir los cambios que se irán produciendo en padres e hijos. Por ahora, tenemos los deseos de Mercedes para ese futuro.

Espero que Teresa sea feliz, como todas mis hijas, y espero que sea lo más independiente posible, que tenga sus amistades, que tenga su trabajo y que sea respetada a todos los niveles, laboral, familiar y  que, ojalá, a nivel sentimental tenga una pareja. Y que dentro de sus capacidades tenga una vida lo más normal posible, con el apoyo de sus hermanas y de su familia.

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Teresa. Como siempre es un placer leerte o en este caso acerca de ti y tu familia!!

Un abrazo y saludos a J. Antonio (gracias por la nueva mención).

La verdad me ha sorprendido este articulo, porque los ninos con sindrome de down siempre me han llamado la atencion ,son ninos carinosos y muchas veces se interesan en aprender cosas ,cuando mas joven estudie teatro y se que los ninos pueden hacer cosas muy buenas lo mismo con la musica y el baile…admiro a los padres de estos ninos supongo no es facil pero no es imposible ..eso es todo lo que tengo que comentar saludos, Liliana

[...] Donoso. Diario de una chica con síndrome de Down. En teoría, ayer operaron a su hija Teresa, 3 años, de amígdalas. En teoría hoy mismo, nos [...]

Mercedes,quiero que sepas que puedes contar conmigo para lo que necesites,yo vivo en México y me especializo en personas con Sindrome de Down,
Te felicito por la gran fortalez y entereza con la que afrontas tu realidad,sobre todo por lo poco que pude leer sé que no estas sola. Saludos

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