Roller Coaster

He wasn't lying. The doctor that first gave me Sophia's diagnosis, Dr. Fernando Acosta (whom I had only the one meeting with, but the name is branded in my brain), he said it would be a long hard road. He said it would be a roller coaster, and to try not to go too high with the highs and not to go too low with the lows. I reread two posts back, Christmas time 2010, and I was high up there. I just knew the ketogenic diet would be it. Look how it's working! And then everything got all fucked up.

We've been on Vigabatrin for about a week. The first few days had not a seizure in sight. Yesterday there were 4 clusters and today at least 3. I'll admit I got a little excited. I was filled with fear and trepidation, but I did get excited. And now the roller coaster descends. Last year I would have said, "We have two more dosage increases, so hopefully what we were seeing at the beginning of the week was just a preview!" And although I might actually say the same thing this year, in my head and heart I have lost almost all of my hope. I still have the desperate hope, but all the optimistic hope is all used up. I know my take away is to ALSO not go so low with the lows. Unfortunately, that isn't my personality type. I am prone to depression, you know. Still, that isn't a reason not to try.

And I am trying. Trying to be grateful, to be positive, to have hope, to pray. I am trying to find the joy in my life, and I know that it is there. There really is a lot to be had, and I really am getting better at having it. Most of my day isn't this doom and gloom. Most of my day is smiles, and discipline, and hugs, and video games, and chores, and good talks, and good food. But I do think about all that has been stolen from all of us, I just get so... overwhelmed and angry and sad and desperate for it to be over. For everything that was stolen from her to come rushing back into her life. Her tiny precious life. And I play out the end scenario. If the seizures are never controlled, her little body will not stand for it. I will lose my girl if they don't stop or are significantly curbed. And now it looks like nothing will be able to do that except God, and He hasn't yet.

Everything seems so big and huge and awful, and then suddenly it zooms out, and Sophia's defect is indiscernible among the millions and billions of people that were, are, and will be and all of their problems, great and small. And I just feel better. That in the great big huge picture, it just does not matter. All that matters is that she was here, that she got to be more than dust for a moment in time, and I got to be here for that. And I know my mother feels the same about me, and so on, and so on. And to not enjoy her to the fullest extent that I am able seems like a crime. And it helps me to avoid getting onto the roller coaster at all.

Time to Time

I guess that just happens from time to time. I look up and realize I haven't posted anything on here for a year.

I guess I just do not know what to say.

My marriage is going better. A lot better.

I got a job after two years of being a stay at home mom. A really good job.

Matthew is doing so well in preschool. He wrote his name on all of his valentines by himself and ordered broccoli at the restaurant for dinner. So proud.

The epilepsy is going stronger than ever. My child has dozens of seizures a day and hundreds of seizures a week. I feel so so so very defeated. I had so much hope. It is just gone. We start a new drug soon (whenever it comes in the mail), and I am so certain it will not work, I am already planning a retrial of the ketogenic diet. I don't really think that will work either. No matter what we have done, the seizures have just gone up. Up. Up. My sweet girl smiles, crawls, sometimes laughs, and stands. She does not walk. She does not learn. She does not talk. She does not chew. She does not care. She tries so hard, but her piece of shit brain, that I am sure I fucked up, holds her back.

You can see that there is so much to be thankful for. I am just so astonished that her disease is actually worse. I am slayed. My heart was shattered into a million pieces, and I am just now finding the energy to put it all back together again. It is so hard too. I just got this job at this amazing company. I was picked to be in a group of 47 new employees out of 2700 applicants. That is awesome. It is just so hard. I've been all about epilepsy, I don't even know what to do. I don't know how to introduce myself to all these people without talking about it, without telling them how brokenhearted I am. How strange is that? The people who know me, they know I'm just trying to do the best I can with a broken heart. These strangers though, I just don't want them to ask, "What is the deal with this Lady? Something is off." I just want them to know what is it, why I am so off. I just need to let it go. I am just sad, that is a part of my personality right now. I've even lost muscle tone in my face from not smiling. My eyes physically droop more than they used to. Isn't that wild? And sad?

You know, pity doesn't bother me. It is the misunderstanding that bothers me. I'm not the bubbly, confident, put you at ease girl I used to be. I want you to know I used to be that way. But right now, she is taking a time out, I guess. Don't take this version of me too personally. It gets better, I promise.

I'm not even making sense. I told you I didn't know what to say.