This girl!

This girl!

Tuesday, May 7, 2013

Thinking... Planning...

First I would like to say that this post is not with the intention to make you feel sad or make you feel sorry for me. I started this blog because I wanted to talk about raising Sophia and while there are a lot of good stories there are also some not so good ones and I want to be honest and talk about them both.

Every once in a while (ok, very often) I think about what Sophia's future is going to be like, and I'm not just talking about whether she is going to be able to talk with or without a communication devise  or walk without a walker, or be potty trained. I am talking about when she is not a little baby anymore but an adult... an adult with special needs.
Right now things are "easy" in the sense that she is a very happy girl, she is so fun to be with, so fun to work with. Everybody loves her: her 1 on 1, her teachers, her classmates, her classmates' parents, her doctors, even at the mall people can't help but smile when they look at her. You think about Sophia and you smile, come on, you try it! See? But, what's going to happen when she's not that cute anymore? What's going to happen when we are not around anymore? Where is she going to live? Who is going to make sure she is eating good? What's going to happen when she is not that fun to work with?

I know that even parents of typical children worry about their children's future and they hope that their children find a good partner and a good job and have a good life. But for me it's a totally different level of worry. Right now, Eric and I are working on setting a will and a trust for Sophia, it's a lot of paperwork, a lot planning, many important decisions to make and a lot of money to make sure our daughter is taken care of when we are gone. This is the easy part though, the hard part is to think about the kind of life she is going to have and the challenges she is going to face.

 I know that there are assisted living facilities where she can get somebody to look over her (which scares the crap out of me), and I worry not only about who is going to do it but are they going to do it with love? I worry not only about who is going to change her diapers if she is not potty trained but, are they going to be compassionate about it? I worry not only about who is going to feed her if she still can't do it herself but, are they going to be patient? Are they going to do it with love? And when she can't communicate her needs or wishes, are they going to try to figure out what the problem is patiently? With love? Pretty tough questions!

I could drive myself crazy if I focus only on the "what ifs?", so whenever I see myself going on that direction I try to think about the good life she is having right now and, I think about all the love she is getting and how happy she makes us. I also think about my responsibility to make sure that she reaches her potential. It's on me. I need to work on making her as independent as possible. It's on me to make sure I do everything I can to give her a very good life while I 'm here and to be as prepared as possible for her future.

Today I decided to go to bed thinking about the great day we spent together, take a look:


  1. Si mi amor, no hay manera de espantar esos miedos, porque son reales. Pero la sabiduría, que este camino con Sofía te ha hecho adquirir, te hace superar esos pensamientos, te hace superarlos y no dejarlos que se vuelvan cotidianos y empañen tu felicidad y la de mi nenita. Tu valentía y fortaleza tampoco te hacen inmune a la tristeza y a la duda. Si es que eres un ser humano, valiente pero a veces te ataca la debilidad, persistente pero a veces te ataca la duda. Lo principal es que estas decidida a trabajar por el bienestar de tu hija, y en ese propósito te acompaña tu esposo y toda tu familia.

  2. Que difíciles preguntas , más aún que difíciles pueden llegar a ser las respuestas. Sin embargo teniendo en cuenta la entrega , valentía , amor , dedicación , fortaleza que tanto tu como Eric han demostrado a lo largo de estos mágicos cinco años. Estás por más difíciles que sean siempre estarán acompañadas de vivencias que engrandeceran no sólo su espíritu si no su vida entera.

    Nata no temas por el futuro , vive tu presente teniendo en cuenta que con el hoy estas creando una vida maravillosa para Sofía más adelante. Ten la certeza de que lo que construyas hoy será lo mejor para ella cuando deje de ser una bebe e inicie su vida adulta.

    No le tengas miedo a soñar, recuerda siempre ponerle alas a tu imaginación y tren de aterrizaje a tus sueños.

  3. i so wish i could press a button to translate what your friends have said - natalia, your writing is incredible - these are such challenging soul searching matters to think and plan for when it is your own child -

    1. Thank you Bambi, these are my mom and my dearest friend from Colombia, they, like you, are encouraging me to keep writing and to keep doing what I do for Sophia. It means the world to me that you get to read it, thank you!

    2. Esa es la unica opcion que tienen papitos... planificar el futuro con las herramientas que tengan hoy y darle el mejor dia de su vida tooodos los dias... los admiro mucho y los quiero mucho... Mi nena no hace mas que reirse siempre...