This girl!

This girl!

Thursday, October 27, 2016

Finding peace in a world full of "what ifs?"

Lots of things have happened since my last post way back in May. At that time Sophia's seizures were really bad and we were running out of medicines to try. We decided to go ahead and get the VNS implant in hopes that it will control the seizures and hopefully stop some of the medications and their side effects. The VNS couldn't be turned on right away and when it was on the doctor turned it up very slowing making sure that Sophia was able to tolerate the feeling in her throat.
 It has been five months since her surgery and I'm happy to report that getting the VNS implant has worked great! Sophia is down to only two medications and she is as happy as always. She is not seizure free as we knew the implant was not a cure, but it has definitely giving my girl some well deserved quality to her life and ours. 

This past year was really hard on all of us. Of course it was hard on Sophia since she is the one who couldn't catch a break but it was also very hard on Eric and me. It was also really hard on my mom who was here helping me when I needed it the most which I am so grateful for. The seizures took a toll on Sophia and all the progress she had made in the last couple of years, the set back is big and although she is slowly getting her strength back I can see some areas where she is going a little backwards and... well, that sucks! During Sophia's first few years I always pride myself in focusing on her abilities instead of her disabilities but this year I've had a really hard time with it. I've found myself wondering about a lot of "what ifs": what if she could walk?", "what if she didn't have a syndrome?", "what if she didn't have epilepsy?", "what if she could sleep through the night?", "what if Sophia could have sleep overs?", "what if... we were typical?". And every time I would stop and get mad at myself for feeling that way, then I'd feel sad and angry that this was the hand that was dealt to us. It was becoming a vicious cycle that I needed to end. 
The truth is this is the hand we were dealt and I can't change that but I can change how I feel about it, at least most of the time. All those "what ifs" are not really a possibility so there's not much sense on wasting all my energy on feeling sorry for myself. Now, I'm not saying I won't ever wonder what if this and that, I'm just going to try to go there as seldom as possible and when I do I'll do my best to forgive myself and go back to enjoy the life I get to live. 
Sophia is doing great, her seizures are mostly under control and she is walking with her walker again, she is playing with her toys and she is back to be the curious girl we all know. She is laughing out loud a lot again and she is enjoying the things she used to before the seizures took over. She is going to school all five days of almost every week and I get great observations from her teacher every single day. I want to choose  to forget about the "what ifs?" and concentrate on the "she is" and "she can", for Sophia... for us.


9 comments:

  1. So glad to hear from you, Natalia! I was just talking about you and Sophia to my son. I was telling him about her unusual disorder (he is pre-med and was very interested) and about what a great mom you are. Love the family picture of the three of you. Just know I think of you often and pray for your little family! Sophia is as darling as ever!

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    1. Thank you so much Dyanne!, for the prayers and for thinking of us. If your son decides to specialize in genetics I'll be more than happy to give him an exclusive interview about our uniqueness 馃槉

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  2. My heart goes out to you. Being the parent of a child with special needs can be exhausting--and I suspect it is even more so, when the specific diagnosis is so rare. You are right, though, that the "What ifs" can consume you. I'm glad that you are choosing not to go there very often. I'm also glad that Sophia is doing great! Hang in there!

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    1. Thank you so much for your words Kristi!

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  3. Mi Amiga Querida:

    Me siento muy afortunada de poder tener noticias tuyas y de Sof铆a m谩s frecuentemente de lo que escribes en el Post, sin embargo cada vez que te leo a trav茅s de este medio es como palpar de primera mano cada una de las sensaciones por las que atraviesan tanto tu, como Eric y sof铆a.

    Este a帽o ha sido un poco duro para ti y para sofie, sin embargo Gracias a Dios se han visto cambios significativos como la reducci贸n en los medicamentos, se que confiando en el cielo dia a dia vendran mejores cosas y un alivio para todos.

    Como siempre lo he dicho y te lo he escrito eres una mujer digna de admiraci贸n por tu entereza, dedicaci贸n y eso no quita que seas un ser humano y que como tal sientas frustraci贸n, enojo y en ocasiones rabia, es normal.

    Amiga desde la distancia te env铆o un fuerte abrazo y toda la buena energ铆a para que cada dia sea mucho mejor.

    Los quiero mucho!!!

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    1. Gracias amiguita! Yo se que cuento contigo!

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  4. Your family has been through so much. I hope things continue to get better. I also hope you get 50,000 more page views. I think there are more people out there who are going through rough times. It helps to know things can get better even if we as do ask those "what if" questions from time to time.

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