I wish she could tell me.

I have gotten to the point where I can see Sophia's strengths clearer than her limitations. I celebrate her progress and her reaching milestones. I see Sophia for what she really is: an amazing, sweet, brave, happy girl who has overcome so many adversities, a girl who made me  see life in a very different light and who I am very proud to the mother of.

But there's days like today when I don't feel that optimistic and understanding. Days when the fact that Sophia has her limitation hits me like a ton of bricks and it leaves on the floor with no arguments to lift my spirit and all I want to do is sob, sob until there's no more tears to be shed. Sophia got sick on Monday, I had to bring her to the ER because she was wheezing and she was having a really hard time breathing. They took her in right away and gave her breathing treatments and even though she was a lot better, they admitted her and we were discharged the next day. The wheezing is gone but Sophia is still not feeling great and is going to stay home the rest of the week. 

The fact that she got sick is not what made me sad today. This has happened just two other times when something is obviously bothering Sophia and I can't figure out what it is. She was very uncomfortable and I tried to meet every need, hunger, congestion, stuffy nose, temperature, thirst, pain... you name it I tried. She was not happy in her bed or my arms or the floor or anywhere. She was making this weird sound along with weeping and screaming. She looked at me like saying: "how come you are not helping me?" "Why don't you understand me?" and it killed me. I want to understand her and I do most of the time, but not today. We had a follow up appointment with her pediatrician and everything looked fine so I didn't think it was anything serious. She was mad, angry and very frustrated and my words were not soothing her nor my hugs or touch. 

This made me mad! I wish she could talk and tell me what she needs, I would give it to her in a second, anything she needs! I wish she could understand me when I tell her that everything is going to be okay. That it'll pass and that she is going to feel better real soon. I don't know if her frustration is because she knows that she can't make herself understood or because she doesn't understand why I don't get what she is saying. Either way it breaks my heart to see that look on her face and it's on days like these that I wish she didn't have a syndrome. I don't wish for a different child, I want the same beautiful Sophia just with a way to communicate her thoughts to the world.

I know it's okay to feel this way every once in a while and that it's even healthy to feel it and let it out. Today was that day and I did let it out. I feel better and Sophia feels better, in few days she will go back to her happy self and I'll forget that I felt like this, until it's time to let it out again.

I'll leave with a video of my baby being the happy, sweet baby that she is: