All the Time

I woke up this morning, thinking of this blog. Thinking how I have neglected my posts, and in turn, neglected myself. I started this blog as an outlet for myself, a way to vent, and express my feelings. I started this blog rather selfishly I guess. But I'm glad that I started it. I'm glad I have let others in to my life, into my daughter's life. I'm glad I can help her raise awareness for this despicable disease, BATTEN DISEASE.
Sophia was two months old when she had her first seizure. I had a perfect pregnancy, a perfect delivery. I had all the testing that is offered, genetic included. I had no idea such a disease existed. I had no idea where my life was headed. Had I known, I wouldn't be here now. That may make some people angry, to know that I would have made the choice to not have my daughter had I known she would face this hell. But those people, those people that would judge a decision like that, have never felt pain. And I know this so completely, because no one would watch a beloved child suffer the way I have watched my daughter. So judge me if you wish. I am okay with that.
For those of you that do not know, Sophia was a miracle baby. A miracle in that I had ALWAYS wanted to have a child and struggled for years to actually conceive. And the hopes and dreams I had for her! My daughter would be smart and independent, she would be confident and polished, she would have manners and morals. My daughter could conquer the world, establish world peace, end hunger, and save all the little animals from abuse (the last is my own personal wish that I just kinda pushed on her :) ).
I have had to let go of my dreams and hopes for what my daughter will accomplish. Well, not really let go, but rather change and adapt. I have learned what is really important: my daughter taught me that. When I was pregnant, I spent hours and hours considering the most perfect bedding for her crib, I compared colors for the walls, and pleaded with my husband to pay way more than we could afford so that she would have all the most "perfect" things in her room. And when we finished the nursery, it did look great! Just what I had always wanted. I remember sitting in her room, in the mandatory glider that just seems to scream nursery, and I remember thinking how it would be when she actually arrived. I folded and refolded her tiny clothes, wondering if she would like her room, and how we would be continually changing it as she grew older. So what Sophia taught me was that this stuff, this material stuff, means nothing. Its so not important. If I could relay anything back to a new mother, it would be that while it seems so important, it is nothing. Trust me. I couldn't care less what color blanket she is resting on, if her clothes have a butterfly or a dog on them, if her room is painted just the right shade of pink. I saw a mother recently with her child, probably about one year old. The child was in the shopping cart and had leaned over, like kids do, to lick on the handle of the cart. The mother yelled at him, and flicked his cheek with her fingers. I could have smacked the mother right across the face. That sounds unreasonable I am sure, but I thought two things: 1) you have no idea what kind of gift you have sitting in front of you, and 2) it really doesnt matter if he licks the heck out of the handle of the cart. I mean, really, now that I am here in this life, if Sophia could lean her head over and lick the handle of shopping cart, I'd laugh and praise her and think how wonderful! Shoot, I'd help support her head and make it more comfortable for her so she could lick away and enjoy herself!
But now I've gotten off track. So my hopes and dreams and how they have changed. Now, I want Sophia to open her eyes. I want Sophia to breathe on her own. I want Sophia to babble every once in a while. I would like to see Sophia smile and hear her laugh. Two days ago, Sophia laughed out loud while the nurse was listening to her breathe. Sophia hasn't laughed out loud but maybe three times in her life. And while the laugh wasn't responsive to anything, and could very well have been a seizure, WOW, what a laugh! Other than hearing her breathe, it is the most beautiful sound in the world. The nurse commented that Sophia thought she was funny but even after I explained the rarity of what Sophia had just done, the nurse could not grasp just how special it was, and just how priveleged she was to have heard this gorgous laugh. And how could the nurse understand? She's never been here, never walked this walk. For other people, other parents, a laugh is just a that: a laugh. For us, and other parents of special kids, a laugh is a moment, a memory, food for the soul. That laugh, that little 3 second laugh, will keep me going. It gives me strength to continue. I can hear it in my sleep. I can recall it any time that I want to. And oh how I want to, I so want to, all the time.