This girl!

This girl!

Tuesday, July 14, 2015

One of those days...

It's one of those days that come around every couple of years in which there's a black cloud over me and I can't help feeling sad and negative. Fortunately the cloud doesn't show up too often and it usually stays one or two days. But when it does come I go through all the stages I went through when I learned my baby had a chromosomal disorder. I'm sad for myself, then I feel guilty for feeling sad and then I'm sad again. I'm also angry that my baby has to work so hard to do everything and I wonder, "why me?" I'm so scared about our future when Sophia is a 30 year old woman, are we going to be feeding her still? Changing her diaper? Are we even going to be here at all? Who's going to take care of her? Who is going to love her?? Then I feel sad and guilty and angry again...

I knew the cloud was coming, I think I started feeling it after Sophia's birthday, she is 7 now and the difference with the rest of kids her age is very noticeable. Everywhere I go with Sophia, people notice how cute she is and their first reaction is to ask how old she is. Even before I answer I know what their reaction is going to be: "7? wow! she is so small!". I usually can deal with the question and accept that it's a very natural reaction to something that is different from what you are used to, but when the cloud is here, that question and especially the response to my answer hurt. Most of the time I honestly focus on her strengths and progress, but when the cloud is over me I see her struggles more and it hurts. The fact that her seizures are back and that we had to increase the new medicine to three times a day hasn't helped at all. I see her struggling to keep her balance and having tremors due to something I assume is neurological and it hurts. I don't know whether she realizes that she is having a hard time or not because she can't tell me yet, and that also hurts. I'm not sure what triggers these dark two days but I do know that when they come I need to accept them, feel them and move on. After a very good cry I start to see the light again, I see how far she has come and the huge progress she has made. I see the many beautiful days we have enjoyed together and look forward to many more.

And so the cloud is gone and won't be back for at least two years. In the meantime, we will deal with whatever we have to, whatever it is we will be okay. All I have to do is look at Sophia smiling at me and hugging me and I know that whatever our future is, we'll adapt and get through it like we always do.





6 comments:

  1. I admire you so, Natalia. It's okay to feel sorry for yourself sometimes. You are always so strong and upbeat, and I know you work very hard at taking the very best care of Sophia. She knows, too, even if she can't tell you right now. Hang in there, sweetheart.

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    1. Aww thank you so much Dyanne! Your words mean a lot!

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  2. I understand this so well. My daughter has a deletion from her 16th chromosome, and I have these days too when the differences between her and her same-age peers seem stark. But then I remember her progress and how much I enjoy her, and I can keep going.

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    1. Yes Sarah, that's what we have to keep doing, feel the sadness when it's there and then move on so we can keep enjoying our little angels!

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  3. Nata en verdad que tanto tu como Eric son de admirar por su fortaleza y entereza, es difícil lidiar con el día a día en general y con el afán que cada día trae, pero ustedes dos a pesar de las miles de adversidades aun así siguen adelante, sueñan y creen que todo puede ser mejor y así será.
    Entiendo totalmente tu sentimiento y quisiera poder estar allí para abrazarte y llenarte de nueva energía, entiendo tu tristeza, tu rabia y tu dolor, tal vez no soy la madre de Sofía pero cada vez que me cuentas que algo no va tan bien sufro y me da rabia pensar que no es justo que una bebe tan linda tenga que pasar por tantas cosas; sin embargo como tú dices si pensamos en el resto de los días , en su mágica sonrisa , en el Da Da que le regala a su padre, en su cabellito dorado, en sus ojitos llenos de amor y felicidad, eso cambia ABSOLUTAMENTE TODO.
    Desde la distancia te envío un súper fuerte abrazo y pidiéndole a la vida que nuestro angelito dorado este cada día mejor sin importar su edad, ni que hace o que no hace, lo importante es que este bien y seguramente así será por que tiene a su lado a los mejores padres del mundo.

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    1. Amiga muchas gracias por tus palabras tan hermosas. Un abrazo para ti tambien!

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