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.