pre mature

»

May
02
2011

Welcome, and our weekend getaway!

I have been meaning to start this blog for almost  3 weeks and got caught up in the design and information to put in it etc, but I finally have something decent.  There is still much to do but that will take some time.  The reason I wanted to do this page is to create SMA awareness so that the people who know and see our family understand better what Amanda’s disease involves and how her life is, so that when you see her you know what to expect.  Also, I see this page as a journal that will keep her experiences alive in a way and I can go back and re read about her.  As you might know, my first language is Spanish, so I apologize if something sounds weird or if I write in “Spanglish”.

As our life usually is, the past three weeks have been full of thoughts and stuff.  Juandi invited me to Bristol Buenaventura to from Saturday to Sunday.  It was the first time I left Amanda overnight since her diagnosis, so I felt nervous but we really needed this getaway.  We had a really nice and relaxing time, and the best part is that while we were there I realized how perfect that place is for Amanda!  The hotel staff knows about her and they offered to help us with anything…in Buenaventura there is plenty of walking we could do, somehting that we can’t do in the city, so I can’t wait :) .  We are still waiting on her stroller (EasyS) but once we get it we will take baby steps and try taking her to places because, in our opinion, there is no point in keeping her alive if she will not experience life.  We still need to be very careful and it will be very stressful, but we have to do it for her.

 

Pool at Bristol Buenaventura

12 comments

No ping yet

  1. Angie Vargas says:

    Marce qué buena idea hacer este blog! Espero que lo llenes con mucha información y recuerdos pronto =)

  2. Zanyita says:

    Marce! Que cool que hayas hecho este blog! Me encanta toda la informacion que pones y me encanta ver fotos de Amanda!
    Su amguita Sophy le mando un beso grande!

  3. Marlene says:

    This page is a great idea, I absolutely love it !!! Loved the pics of Mandy and Valentina, her face said it all, she did not like the intruder hahahaha. Love you tons xoxoxo Marlene

  4. Angie Quintero says:

    Marce, congratulations on the blog. I love seeing pictures of Amanda and learning about SMA. Lots of hugs to all of you from California. Love, Angie

  5. Patricia Villanueva says:

    Marce y Juandi, me encanta el blog!! los felicito de verdad.les mando un abrazote.

  6. Madelaine y Juan Raul says:

    Esta muy bonito el blog, te felicito por la iniciativa. Que linda se ve Amanda en sus fotos leyendole, como te mira! Un abrazo.

  7. Denisse Vega says:

    Marcela, me parece super bueno el blog! Amanda esta enorme y bellisima! Un abrazo, Denisse

  8. Marce Vallarino de Diez says:

    Marce y Juandi!!!!! Realmente estoy impresionada de los ejemplares padres que tiene Amanda. Gracias por compartir al mundo a su hermosa hija y tanta informacion valiosisima. Tienen una hermosa hija, llena de amor!!!!!!! Ese es el mejor regalo que se le puede dar a un ser humano. Los admiro y aprecio muchisimo………..un fuerte abrazo.

  9. Marivi says:

    Marce!! Este blog esta super yque buena idea! Amanda esta bellisima,los felicito! Un besode parte de suamiguito Ignacio ;)

  10. Cheny says:

    Que pritty! no había tenido chance de meterme. Está super bonito. Muchas felicidades!!!! Los quiero mucho!!!

  11. Analisa Vallarino says:

    Marce, que linda idea de hacer este blog. Eres realmente una mama ejemplar. Te admiro mucho. Amanda esta preciosa!!!Te mando un beso grande, Betty

  12. Raque de la Guardia says:

    Marce y Juandi me encanto!!!….y lo mas bonito es compartir toda esa informacion de Amanda..muy lindo como lo escribieron
    y las fotos son una ternura,,,un besito a los tres!!

Leave a Reply

Your email address will not be published.

* Copy this password:

* Type or paste password here:

2,547 Spam Comments Blocked so far by Spam Free Wordpress

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>